This isn't an easy post to write. In a sense, I feel like its the end of what was a hopeful chapter of blogs. Anyways, the fecal biotherapy treatment hasn't panned out, and I will be getting surgery soon.
This July I was so critically ill, I needed surgery. The one thing I hadn't tried yet (short of a bone marrow transplant) was fecal biotherapy, so I told the doctor (whom I had already consulted with) I was ready to go for it. This guy, who I originally met with in May has repeatedly left me hanging, failed to communicate, and showed no interest in helping me get better. I have been suffering this entire time, and can no longer deal with this pain. Even if I could still tolerate the pain, I can't put my life on hold any longer.
Even if I could start the fecal biotherapy tomorrow, I would have to be put on meds (that I'd likely need to drive to the states to purchase) for 3 entire weeks, then starting the fecal stuff, all the while crossing my fingers hoping it will actually work. I've been on the verge of going to the emergency room a handful of times already this fall, and I simply can't wait that long.
Being my procrastinating self I put off even calling the surgeons office until I hit the point where it literally felt like I needed my guts hacked out right then and there. Well, not that I haven't had that level or pain before, but its all the time now. The constant bloating and distention is affecting my breathing, I've lost function of my deep ab muscles, and getting out of the house for even an hour is a really big deal for me right now. It's no way to live. So I called the surgeons office first week of November, and had to wait until the 26th to even discuss the operation I needed asap.
It was a crappy 3 weeks. I felt like all of my fighting over these last 2 years was all for nothing. I felt like a fool for wasting so much time, money, and energy, to avoid a surgery that I was now getting. I felt like I was settling. I fell into one of my depressive cycles again. Motivation went out the window, I started binge eating, not getting out of bed, and gave up on doing physio, taking my supplements, etc. I was seriously dreading that appointment. I was scared to find out what my new reality was going to be.
I ended up receiving about the best possible news I could get though, and it won't be as bad. Like I was expecting, he said he would be removing my large bowel, terminal ileum, and any other sections of the small intestine that are too far gone. The open end of the small intestine will then be routed through a hole in my stomach and stool will pass into a colostomy bag attached to me. What I didn't expect was that he said he would leave my rectum intact, making it possible to re-attach the small intestine to the rectum in 6-12 months if everything heals properly, and then no more bag!
After being sick for 2 years, and suffering the last 6 months waiting for a procedure that may or may not work, 6 months with the bag is nothing. Especially considering the diseased tissues will be removed and the toilet will no longer be my ball and chain every day. This is not the outcome I was hoping for, but that's life. This also is NOT A CURE. We are simply removing the narrowed/scar tissued/inflamed/bloody stuff, giving me a chance to rest and heal again. I think of it as if 99% of my bodies resources are trying to heal these incurable tissues, and once they are gone, applying all of my knowledge of health and wellness will actually have a chance of doing something. Fecal therapy may still be a supplementary treatment option down the road.
I'm still not thrilled about losing my internal organs, but it feels good to have some closure. I finally know the end is in sight. Now that there's a plan in place, I'm back to working at the things I can control. I felt a lot less depressed after the meeting, ready to get back at it. Blogging, stretching, journaling, coaching, eating, meditating, whatever, all that stuff seemed worthwhile again. Though I'm in a much better head space than I was in November, I don't want anyone to think this will be a walk in the park. Its major surgery, and January is probably gonna hurt.
One more month of physical agony perhaps, but I'm going to try my best to look after myself and enjoy time with friends and family over the holidays. I feel extremely blessed to have so many loving, understandable people around me that support my decisions and make me feel safe. Thanks everyone.
Monday 8 December 2014
Tuesday 28 October 2014
Treatment delayed AGAIN
Really not impressed this time. As of yesterday morning Dr. Louie still hadn't gotten in touch with me regarding any prep work for the procedure, like the receptionist told me he would. I sent another email asking what exactly was going to go down, and he actually called me back right away.
He was under the impression I was just coming in to have my C.Diff treated further. When we met all the way back in May it was all about crohn's. Keep in mind all the contact I have had since then has been through his receptionist. She told me the reason this got postponed from the original date of August 26th was because I was a special case he needed to take some extra time to prepare for. How could he not know that I was seeing him for my crohn's?? This poor communication has been extremely frustrating.
I thought it was strange that he had me booked to come this Wednesday without having done any prep work. At least he actually responded to my email for once. Anyways, to treat my crohn's he needs to put me on a special drug for THREE WEEKS before I can even start the fecal therapy. He needs special approval from health Canada to even get the drug, which he asked for yesterday. If denied, which is very likely, we will need to travel to Minot to pick up a prescription. I would need to take that stuff for 3 weeks, and then finally start in Calgary.
I just don't know how much more I can take. Could he not have taken 10 minutes out of his day to explain this all to me in July? All the contact I have ever had is his receptionist booking dates for "the procedure" and then bumping them back. No information on the procedure itself let alone ever getting to speak with the Doctor. I have sent him plenty of emails that he simply never returned.
The reason we decided to do the fundraiser and try this in the first place was because I was in critical condition and needed to do something about it, fast. That was July. Since then I've been simply living a life of self-preservation. Constantly running from pain and trying everything possible just to put together a good day. This past month has been exceptionally brutal, catching C.Diff and becoming bedridden, the only thing getting me by was knowing that I only have a couple more weeks to endure. Before knowing I had C Diff and few weeks ago I was ready to admit myself and get surgery. It was so excruciatingly painful and I really believed my body was quitting on me. The drugs got me almost back to my baseline, but I really feel like I lost another month of my life, and I'm really not satisfied with my baseline anyways.
I can't live this half life anymore. I'm sick and tired of a good day being one where I left the house for an hour, or one where I handled solid food instead of just smoothies. I'm ready to have surgery and move on with my life. The pain is one thing, but I'm mentally worn out. I know I'm tough, but I'm tired of NEEDING to be tough. It's too mentally exhausting trying to stay strong during a losing fight. It's especially scary knowing this the therapy might not even work. The other scary thing is because of the treatment, for this next month, I can't take any medications even if my health takes a turn for the worse.
I decided to book a consultation with the surgeon just to have a back up plan in place. Sure enough, I can't even get a consultation until the 26th of November. So either way, I'm left to struggle for another month. I'll know by the end of the week if the drugs get approved by Health Canada, and either start them asap, or begin planning a trip down to Minot. I'll follow Dr. Louie's plan and keep toughing it out for now because like I said, I can't get the surgery until next month anyways so I might as well. Will keep everyone posted.
He was under the impression I was just coming in to have my C.Diff treated further. When we met all the way back in May it was all about crohn's. Keep in mind all the contact I have had since then has been through his receptionist. She told me the reason this got postponed from the original date of August 26th was because I was a special case he needed to take some extra time to prepare for. How could he not know that I was seeing him for my crohn's?? This poor communication has been extremely frustrating.
I thought it was strange that he had me booked to come this Wednesday without having done any prep work. At least he actually responded to my email for once. Anyways, to treat my crohn's he needs to put me on a special drug for THREE WEEKS before I can even start the fecal therapy. He needs special approval from health Canada to even get the drug, which he asked for yesterday. If denied, which is very likely, we will need to travel to Minot to pick up a prescription. I would need to take that stuff for 3 weeks, and then finally start in Calgary.
I just don't know how much more I can take. Could he not have taken 10 minutes out of his day to explain this all to me in July? All the contact I have ever had is his receptionist booking dates for "the procedure" and then bumping them back. No information on the procedure itself let alone ever getting to speak with the Doctor. I have sent him plenty of emails that he simply never returned.
The reason we decided to do the fundraiser and try this in the first place was because I was in critical condition and needed to do something about it, fast. That was July. Since then I've been simply living a life of self-preservation. Constantly running from pain and trying everything possible just to put together a good day. This past month has been exceptionally brutal, catching C.Diff and becoming bedridden, the only thing getting me by was knowing that I only have a couple more weeks to endure. Before knowing I had C Diff and few weeks ago I was ready to admit myself and get surgery. It was so excruciatingly painful and I really believed my body was quitting on me. The drugs got me almost back to my baseline, but I really feel like I lost another month of my life, and I'm really not satisfied with my baseline anyways.
I can't live this half life anymore. I'm sick and tired of a good day being one where I left the house for an hour, or one where I handled solid food instead of just smoothies. I'm ready to have surgery and move on with my life. The pain is one thing, but I'm mentally worn out. I know I'm tough, but I'm tired of NEEDING to be tough. It's too mentally exhausting trying to stay strong during a losing fight. It's especially scary knowing this the therapy might not even work. The other scary thing is because of the treatment, for this next month, I can't take any medications even if my health takes a turn for the worse.
I decided to book a consultation with the surgeon just to have a back up plan in place. Sure enough, I can't even get a consultation until the 26th of November. So either way, I'm left to struggle for another month. I'll know by the end of the week if the drugs get approved by Health Canada, and either start them asap, or begin planning a trip down to Minot. I'll follow Dr. Louie's plan and keep toughing it out for now because like I said, I can't get the surgery until next month anyways so I might as well. Will keep everyone posted.
Monday 20 October 2014
Depression and Inflammatory Bowel Disease
Time to vent some thoughts.
I have much I want to share with you guys. Whether its basic updates on my health, recipes I feel like I should share, lots of personal rants and opinions (as petty as they may be), things I am grateful for, lyrics that inspire me, personal goals, or lessons I have learned from this disease. It just all feels overwhelming so I'm just writing when I feel up to it. Most of all however, I feel I owe it to others with this disease to share with the world what kind of living hell this disease truly can be.
I don't post how shitty I'm feeling or how depressed I am for sympathy. Don't get me wrong, I've found sharing to be therapeutic, but the main reason I do it is to share with the world what crohn's, and other "hidden" chronic diseases really do to people. I know that I will get better. Maybe in a few weeks, maybe in a year. I will be strong again. I will be happy again, and I know that I will achieve great things. That is all great, but my fear is that I will get better without the full story being told. I feel this responsibility to share HOW I got better, and what the entire process truly entailed. I even fear losing touch with the suffering myself. The last thing I want is to get better and move on to this happy life, and start taking things for granted again. I want people to know how truly awful this experience has been, and I myself don't want to lose touch with it because of the perspective it has given me.
Out of all the terrible symptoms of crohn's and colitis, mental health is one of the most important things for me to share, because nobody has any idea that this disease can mess with your brain.
I've struggled with depression of varying degrees for the last two years, and for a combination of reasons. For anyone who doesn't know depression isnt simply being really sad. The best way I can describe it is things like:
-A total loss of interest in anything. This brutal combination of being bored out of your skull, having all the free time in the world, yet nothing appeals to you. Nothing brings you joy, nothing seems worth doing. It messes with your head.
-Feeling extremely dull. Life is dull, everything feels grey.
- Feeling paralyzed. Feeling stuck. I can tell when I'm depressed, and I know what makes it better, but you lack ambition to the point where nothing seems worth it. The tiniest, most menial tasks become so intimidating.
-Feeling like you have nothing to offer. When I'm depressed I'm totally conscious of the fact that I'm not fun to be around, I can be rude and condescending to people I love, and I never have anything positive to say. I'm aware of it. I'm not proud of the fact that I'm bitter. What ends up happening sort of goes along with "If you can't say anything nice, don't say anything at all." So I hide alone in my apartment, not wanting to be toxic to the people I love.
-Depression isn't sadness or a sign of weakness, it is the result of staying strong but fighting a losing fight for way too long.
-Insomnia. Always tired, can never sleep.
So that's how I would explain it in a nutshell. It is extremely debilitating yet easy to mask. It can happen for no reason at all, which can be the worst because you beat yourself up for being irrational.
The first thing that contributed towards my depression was losing my identity as an athlete. This I'm actually thankful for, because almost all high performance athletes go through this when they lose their sport, whether its because of retirement, or an injury. Athletes have this unhealthy tendency to base their entire identity around being an athlete, thinking that is all that makes them who they are. It sounds cliche, but they don't see that there is more to life, that there is more to them than sport. I was one of these athletes, and the reason I'm happy I had that "particular" depression is because it was inevitable, and I got it out of the way at a young age. It was NOT easy, but having pole vault taken away humbled the shit out of me. I didn't have any say in the matter. I had no other option than to find joy in other things, and to figure out what else I had to offer the world. The beauty of it is that vaulters peak in their late 20's, so it will still be there when I'm healthy. Difference is that this time around, it will be nothing but a gift, nothing but a bonus. Though I miss it like crazy, I now know that I can be happy without it. When I'm back on the runway, it will be nothing but a celebration rather than an obligation.
Then there is depression caused from isolation. I've been stuck in my apartment for months on end, even before/aside from social anxiety, simply just from being sick as a dog!!!! At any given moment, my torso will completely lock up, I'll become short of breath, and I'll start to feel knives twisting inside my my stomach. This will escalate for about 20 minutes until I pass about 3 tiny, bloody bowel movements that makes me want to throw up at the same time. This "only" happens 5-10x per day, so yeah, there are plenty of "non-sick" parts of my day where I could go for a walk or watch a baseball game, but the fact is that I cannot predict it, so I have this constant fear of leaving my own small comfort zone. Its not the pain attacks I'm afraid of, I'm used to that. It's being sick and vulnerable out in public that scares the hell of out me. Other than a very small number of people, I don't want ANYONE around me during those episodes. Do you know what it's like to be in a small class and have to make 3 separate, 10 minute bathroom trips within one hour when they don't know your situation? Or how depressing and frustrating, and stressful it is to risk having to pull over to a gas station (again, for like 10 minutes) any time you want to drive across the city?
So I got on some tangents there, but you can start to see why people with inflammatory bowel disease just sort of disappear, and never want to leave the house. Keep in mind we only even attempt these outings the rare time we even have the energy to do so. Even in between pain attacks the fatigue from anemia, insomnia, and lack of nutrient absorption (if you are able to eat at all) , is enough to make you never want to get out of bed. So you can imagine how frustrating it is to have a pain attack on those very rare times you actually feel like living life.
The result of living in isolation is becoming detached from the world. Detached from your friends and family, from your job, from your hobbies, detached from life. It doesn't happen overnight (which is why it is so hard to catch), but eventually you find yourself feeling dead inside, wondering what the hell happened. By the time you realize you are depressed, getting out of that hole is extremely intimidating, even if you know how.
I also was on prednisone off and on for over a year, which chemically induces depression as a side effect on its own. I'm still emotional as hell because of this disease (see next paragraph), but prednisone can change people into a total Jekyll and Hyde. I won't get into it, but that stuff is evil and I'll never take it again unless its a total emergency.
The last, but most important contribution to depression that I want to share is how this disease affects the brain just by its very own nature. Crash course here: serotonin is the body's "feel good" hormone responsible for happiness, motivation, etc. Without serotonin, you become depressed. Bet you didn't know that 80-95% of a person's serotonin lives in the gut!!! So you can imagine how digestive diseases can wreak havoc on people's emotions. This explains why even with IBS many of the main symptoms are psychiatric, not just digestive. It's not just serotonin that is made/resides in the gut, but a whole other host of hormones and neurotransmitters. It makes sense to me, looking back I have always been an anxious kid, and I've displayed symptoms of ADD my entire life. This is pretty new stuff, but scientists are already starting to refer to the gut as "the second brain". I didn't even know this stuff until recently, but I always make sure to mention the mental side of things now when people ask me what crohn's is.
I have much I want to share with you guys. Whether its basic updates on my health, recipes I feel like I should share, lots of personal rants and opinions (as petty as they may be), things I am grateful for, lyrics that inspire me, personal goals, or lessons I have learned from this disease. It just all feels overwhelming so I'm just writing when I feel up to it. Most of all however, I feel I owe it to others with this disease to share with the world what kind of living hell this disease truly can be.
I don't post how shitty I'm feeling or how depressed I am for sympathy. Don't get me wrong, I've found sharing to be therapeutic, but the main reason I do it is to share with the world what crohn's, and other "hidden" chronic diseases really do to people. I know that I will get better. Maybe in a few weeks, maybe in a year. I will be strong again. I will be happy again, and I know that I will achieve great things. That is all great, but my fear is that I will get better without the full story being told. I feel this responsibility to share HOW I got better, and what the entire process truly entailed. I even fear losing touch with the suffering myself. The last thing I want is to get better and move on to this happy life, and start taking things for granted again. I want people to know how truly awful this experience has been, and I myself don't want to lose touch with it because of the perspective it has given me.
Out of all the terrible symptoms of crohn's and colitis, mental health is one of the most important things for me to share, because nobody has any idea that this disease can mess with your brain.
I've struggled with depression of varying degrees for the last two years, and for a combination of reasons. For anyone who doesn't know depression isnt simply being really sad. The best way I can describe it is things like:
-A total loss of interest in anything. This brutal combination of being bored out of your skull, having all the free time in the world, yet nothing appeals to you. Nothing brings you joy, nothing seems worth doing. It messes with your head.
-Feeling extremely dull. Life is dull, everything feels grey.
- Feeling paralyzed. Feeling stuck. I can tell when I'm depressed, and I know what makes it better, but you lack ambition to the point where nothing seems worth it. The tiniest, most menial tasks become so intimidating.
-Feeling like you have nothing to offer. When I'm depressed I'm totally conscious of the fact that I'm not fun to be around, I can be rude and condescending to people I love, and I never have anything positive to say. I'm aware of it. I'm not proud of the fact that I'm bitter. What ends up happening sort of goes along with "If you can't say anything nice, don't say anything at all." So I hide alone in my apartment, not wanting to be toxic to the people I love.
-Depression isn't sadness or a sign of weakness, it is the result of staying strong but fighting a losing fight for way too long.
-Insomnia. Always tired, can never sleep.
So that's how I would explain it in a nutshell. It is extremely debilitating yet easy to mask. It can happen for no reason at all, which can be the worst because you beat yourself up for being irrational.
The first thing that contributed towards my depression was losing my identity as an athlete. This I'm actually thankful for, because almost all high performance athletes go through this when they lose their sport, whether its because of retirement, or an injury. Athletes have this unhealthy tendency to base their entire identity around being an athlete, thinking that is all that makes them who they are. It sounds cliche, but they don't see that there is more to life, that there is more to them than sport. I was one of these athletes, and the reason I'm happy I had that "particular" depression is because it was inevitable, and I got it out of the way at a young age. It was NOT easy, but having pole vault taken away humbled the shit out of me. I didn't have any say in the matter. I had no other option than to find joy in other things, and to figure out what else I had to offer the world. The beauty of it is that vaulters peak in their late 20's, so it will still be there when I'm healthy. Difference is that this time around, it will be nothing but a gift, nothing but a bonus. Though I miss it like crazy, I now know that I can be happy without it. When I'm back on the runway, it will be nothing but a celebration rather than an obligation.
Then there is depression caused from isolation. I've been stuck in my apartment for months on end, even before/aside from social anxiety, simply just from being sick as a dog!!!! At any given moment, my torso will completely lock up, I'll become short of breath, and I'll start to feel knives twisting inside my my stomach. This will escalate for about 20 minutes until I pass about 3 tiny, bloody bowel movements that makes me want to throw up at the same time. This "only" happens 5-10x per day, so yeah, there are plenty of "non-sick" parts of my day where I could go for a walk or watch a baseball game, but the fact is that I cannot predict it, so I have this constant fear of leaving my own small comfort zone. Its not the pain attacks I'm afraid of, I'm used to that. It's being sick and vulnerable out in public that scares the hell of out me. Other than a very small number of people, I don't want ANYONE around me during those episodes. Do you know what it's like to be in a small class and have to make 3 separate, 10 minute bathroom trips within one hour when they don't know your situation? Or how depressing and frustrating, and stressful it is to risk having to pull over to a gas station (again, for like 10 minutes) any time you want to drive across the city?
So I got on some tangents there, but you can start to see why people with inflammatory bowel disease just sort of disappear, and never want to leave the house. Keep in mind we only even attempt these outings the rare time we even have the energy to do so. Even in between pain attacks the fatigue from anemia, insomnia, and lack of nutrient absorption (if you are able to eat at all) , is enough to make you never want to get out of bed. So you can imagine how frustrating it is to have a pain attack on those very rare times you actually feel like living life.
The result of living in isolation is becoming detached from the world. Detached from your friends and family, from your job, from your hobbies, detached from life. It doesn't happen overnight (which is why it is so hard to catch), but eventually you find yourself feeling dead inside, wondering what the hell happened. By the time you realize you are depressed, getting out of that hole is extremely intimidating, even if you know how.
I also was on prednisone off and on for over a year, which chemically induces depression as a side effect on its own. I'm still emotional as hell because of this disease (see next paragraph), but prednisone can change people into a total Jekyll and Hyde. I won't get into it, but that stuff is evil and I'll never take it again unless its a total emergency.
The last, but most important contribution to depression that I want to share is how this disease affects the brain just by its very own nature. Crash course here: serotonin is the body's "feel good" hormone responsible for happiness, motivation, etc. Without serotonin, you become depressed. Bet you didn't know that 80-95% of a person's serotonin lives in the gut!!! So you can imagine how digestive diseases can wreak havoc on people's emotions. This explains why even with IBS many of the main symptoms are psychiatric, not just digestive. It's not just serotonin that is made/resides in the gut, but a whole other host of hormones and neurotransmitters. It makes sense to me, looking back I have always been an anxious kid, and I've displayed symptoms of ADD my entire life. This is pretty new stuff, but scientists are already starting to refer to the gut as "the second brain". I didn't even know this stuff until recently, but I always make sure to mention the mental side of things now when people ask me what crohn's is.
Friday 3 October 2014
Crashing again
Have I ever mentioned how frustrating this disease is?
The reason I haven't blogged in a while is because I've been suffering again these last few weeks. I typically get on a posting roll when things are going well, and then neglect to blog when I'm struggling. I started to slip about 3 weeks ago, but up until that point was feeling great. I had been to the gym a few times, got outside a little more, and begun a couple of night classes.
All of a sudden I started having perianal pain again, I know its pretty gross but it can be extremely painful and was quite worrisome. My left foot swole up again, and my knees and back are always sore. Soon I became feverish, and lost all strength and energy again. I knew this was bad news, I didn't want my old fistula wound to become infected so I phoned my Dr.'s office and left a message to no avail. I finally got in touch with them a week later and they issued stool, urine, and blood tests.
Urine was fine, the blood test showed my inflammation back up to 150, 3 times as high as the last test. This really frustrated me because I was doing so well, I really thought I was on the up. It was no surprise however, because I definitely feel terrible. The nurse left a message on my phone today letting me know he stool sample tested positive for C. Difficle, a really nasty bacterial infection of the gut. I've had this before and it's not pleasant, but at least gives me an idea of why I feel so terrible. The frustrating part is they left me a message Friday afternoon, and I won't be able to start anything until Monday.
I'm just really angry, frustrated, and sad from being such a vegetable. I'm tired of the pain, I'm tired of sleepless nights, I'm tired of not having the strength to leave the apartment. I'm tired of being so alone at home constantly. Its getting old, and I'm getting impatient. All I want is to go back to work, just to feel valued and have that sense of purpose again.
So game plan moving forward will be to tough it out for the weekend, and likely start some antibiotics Monday. The plan for fecal biotherapy is still up in the air, all the receptionist will give us is "sometime after the 17th". We'll see what that means. I'm really tired of just simply surviving.
The reason I haven't blogged in a while is because I've been suffering again these last few weeks. I typically get on a posting roll when things are going well, and then neglect to blog when I'm struggling. I started to slip about 3 weeks ago, but up until that point was feeling great. I had been to the gym a few times, got outside a little more, and begun a couple of night classes.
All of a sudden I started having perianal pain again, I know its pretty gross but it can be extremely painful and was quite worrisome. My left foot swole up again, and my knees and back are always sore. Soon I became feverish, and lost all strength and energy again. I knew this was bad news, I didn't want my old fistula wound to become infected so I phoned my Dr.'s office and left a message to no avail. I finally got in touch with them a week later and they issued stool, urine, and blood tests.
Urine was fine, the blood test showed my inflammation back up to 150, 3 times as high as the last test. This really frustrated me because I was doing so well, I really thought I was on the up. It was no surprise however, because I definitely feel terrible. The nurse left a message on my phone today letting me know he stool sample tested positive for C. Difficle, a really nasty bacterial infection of the gut. I've had this before and it's not pleasant, but at least gives me an idea of why I feel so terrible. The frustrating part is they left me a message Friday afternoon, and I won't be able to start anything until Monday.
I'm just really angry, frustrated, and sad from being such a vegetable. I'm tired of the pain, I'm tired of sleepless nights, I'm tired of not having the strength to leave the apartment. I'm tired of being so alone at home constantly. Its getting old, and I'm getting impatient. All I want is to go back to work, just to feel valued and have that sense of purpose again.
So game plan moving forward will be to tough it out for the weekend, and likely start some antibiotics Monday. The plan for fecal biotherapy is still up in the air, all the receptionist will give us is "sometime after the 17th". We'll see what that means. I'm really tired of just simply surviving.
Thursday 4 September 2014
Grindin' :)
Tough night again last night but I got my ass to the gym anyways, and had to write a blog because I feel so damn good!
Bad sleep last night. I'm having troubles with my mind racing at night still. It's at least not anxiety keeping me awake, just obsessing over to-do lists and other stuff that is totally irrelevant in the middle of the night. Had a typical morning, up around 6am with the hangover-of-death feeling. Not to mention the crippling torso discomfort. I would call it back pain, but torso discomfort is more accurate. It doesnt sound as bad but it fucking sucks. When I wake up, my intestines are in spasm so bad that all of my "front" core muscles literally contract against my will and pull my whole body into forward flexion. My physiotherapist figures this is how I got my bulged disk, and continue to have back pain even post-decompression therapy. Not to mention being on the toilet, I'm violently pulled forward at least 10x per day. Obviously, the solution is maintaining proper posture, trouble here is that my erectors (back muscles) have to work 10x harder than normal just to maintain that upright posture, because they are fighting against the opposing muscle groups, that will not let go until my intestines let go. So yes, I can correct it, it just becomes exhausting trying to stay upright all the time. Sitting is the worst.
OK, got off on a tangent on how its not just back pain. Anyways I woke up with this torso pain around 6am, the usual, feelinglike garbage but I'm experienced enough that I know I will continue to feel this way until I've had 5-6 really awful bm's, still sometimes bloody. I try to start stretching, extending my spine, and usually get on the inversion table to get things moving. This is all extremely uncomfortable at the time, but sort of speeds up the inevitable. If I'm not up to moving yet, I'll start with a cup of ginger tea for the nausea. As soon as I'm able, I try get down either a bulletproof coffee or a small shake, usually just water, protein, and a couple shots of olive/avocado oil blended together. I've become a firm believer of protein and fat ONLY for breakfast (because it works), the trick for me was getting it in a form I can choke down in the mornings. As soon as I put anything into my mouth its a matter of about 5 minutes before I need to run to the can. I'm aware of this in the mornings and like I described, the body pain doesn't go away until everything is "emptied out" for the morning. So even though its the last thing I want to do, forcing down a few calories usually results in getting my day started a bit sooner if I can tolerate it. When your sick, getting better is often just a matter of doing stuff you don't want to do.
The good news is I started feeling better around 10. My last two days have been shitty so I was damn well gonna capitalize on this one. I'm definitely making progress, the last blog I posted about pacing around for an hour before leaving the house. I'm finally stepping out of my comfort zone an ENJOYING seeing people. It really feels amazing to get that back. That alone was enough of a victory to put a smile on my face. Also, instead of nervously walking around the gym picking odd exercises, I wrote a warm up which I stuck to, and then did a fun little strength workout. I'm so thankful to be able to lift again, I beleive short, but intense training has amazing health benefits for sick people. Yoga is awesome for a million reasons, but you simply cannot duplicate the hormonal effects/benefits of heavy lifting or sprinting. Growth hormone and testosterone are not just for bodybuilders, they are both extremely important for HEALING!! Also anti aging, but I'm getting on another tangent so I'll save that for another post. Today's workout was:
-5 minutes elliptical
- foam roll and sun salutations
Warm up (3 rounds)
- BW reverse lunge with twist (pause at bottom for a good active stretch)
-10 Cable external rotations (good arm)
- 5 glute bridges/leg (just for activation purposed)
- 10 leg swings against a wall
GETTING JACKED (jk)
All in a row:
- 3 Back squats at 125lbs
- 3 Kettbell push jerks (The grey one lol, dunno size) Right arm only
- 3 Single arm chin negatives. Right arm only
Rested 3 minutes, did 5 sets.
Pretty high intensity for just starting, but the key here is that the volume is extremely low. Volume makes me sick, not intensity. I may come off as a bit of a bonehead choosing to lift weights having arthritis and all this other nonsense, but I've found it to be all postural. My back is relatively strong still. I can still squat and deadlift ok with strict form, but picking a pen up off the floor with a rounded spine can fuck me right up. Long drives = by FAR the worst thing for my back. You get the idea.
I wish more sick people realized the benefits of exercise if they just pushed through it, because I feel amazing right now. The trick isn't fooling yourself into thinking a 30 minute walk will make you better. Don't get me wrong, it will feel refreshing, but its boring as hell and won't give you the addictive benefits that make you want to keep doing it. I want to re-iterate that although I was lifting "heavy", the total number of reps for ALL my exercises today was only 45. Keeping the volume down is how I am able to make this work! By the time I got home I was hungry as hell, in a cheery mood, and the whole workout took the same time as that 30 minute walk. Of course I lingered and visited at the gym, which was also very therapeutic for me.
Last thing I'll share is my post workout shake for anyone who's interested in what I take. I have a few recipes for concoctions I believe to be optimal, but I'll save those for when I'm REALLY training. For now I keep it simple:
-Not enough volume to necessitate any carbs. If I wanted some I'd use a bit of cherry juice or some waxy maize starch, etc.
- 1 scoop grass fed whey isolate (shouldn't need to explain that one)
- 1 scoop glutamine. I have my mixed thoughts on it's efficacy as a workout supplement, but its cheap as hell, and happens to be VERY important for the gut lining. I take it a few times a day for my crohn's anyways so I throw it in the shake.
- A few big dashes of turmeric. This is a hardcore anti-inflammatory, and since my body is always fighting a raging onslaught of inflammation, anything to dumb down the acute response from training is welcome. It's also something I take all day long for my guts anyways. Google some research, it's actually more effective than advil for arthritis, etc. Some high-end supplement companies are even starting to throw it into their post-workout blends now. I believe you still want that acute inflammatory response during training, but afterwards its time to bring it down. Think of why you jump in the ice bath after lactic workouts (although the research on those is also now SUPER conflicting).
-1/2tsp acai berry powder. This is something new new I'm trying, just something I had on the counter for throwing into smoothies. It's pretty well known for being an extremely potent antioxidant. There have been studies showing cherry juice (also pomegranate and cranberry, but don't quote me on that) being effective in reducing DOMS when taken post workout due to the antioxidants. It's worked for me in the past anyways. My hope/theory is that acai might have the same effect. If it works it will be a lot more convenient to mix in the powder as opposed to bringing actual cherry juice to the gym.
So yeah, great day so far! I'm so thankful to have so many fit people around me to keep me inspired. If my girlfriend can get up and go for a run at 7am when she has a full day ahead of her, I can dam well get to the gym for 30 minutes when its convenient for me and my entire day is wide open.
Like most of these, that turned out being a lot longer than I had planned. Time to eat again, and then make a costco run!
Cheers!
Bad sleep last night. I'm having troubles with my mind racing at night still. It's at least not anxiety keeping me awake, just obsessing over to-do lists and other stuff that is totally irrelevant in the middle of the night. Had a typical morning, up around 6am with the hangover-of-death feeling. Not to mention the crippling torso discomfort. I would call it back pain, but torso discomfort is more accurate. It doesnt sound as bad but it fucking sucks. When I wake up, my intestines are in spasm so bad that all of my "front" core muscles literally contract against my will and pull my whole body into forward flexion. My physiotherapist figures this is how I got my bulged disk, and continue to have back pain even post-decompression therapy. Not to mention being on the toilet, I'm violently pulled forward at least 10x per day. Obviously, the solution is maintaining proper posture, trouble here is that my erectors (back muscles) have to work 10x harder than normal just to maintain that upright posture, because they are fighting against the opposing muscle groups, that will not let go until my intestines let go. So yes, I can correct it, it just becomes exhausting trying to stay upright all the time. Sitting is the worst.
OK, got off on a tangent on how its not just back pain. Anyways I woke up with this torso pain around 6am, the usual, feelinglike garbage but I'm experienced enough that I know I will continue to feel this way until I've had 5-6 really awful bm's, still sometimes bloody. I try to start stretching, extending my spine, and usually get on the inversion table to get things moving. This is all extremely uncomfortable at the time, but sort of speeds up the inevitable. If I'm not up to moving yet, I'll start with a cup of ginger tea for the nausea. As soon as I'm able, I try get down either a bulletproof coffee or a small shake, usually just water, protein, and a couple shots of olive/avocado oil blended together. I've become a firm believer of protein and fat ONLY for breakfast (because it works), the trick for me was getting it in a form I can choke down in the mornings. As soon as I put anything into my mouth its a matter of about 5 minutes before I need to run to the can. I'm aware of this in the mornings and like I described, the body pain doesn't go away until everything is "emptied out" for the morning. So even though its the last thing I want to do, forcing down a few calories usually results in getting my day started a bit sooner if I can tolerate it. When your sick, getting better is often just a matter of doing stuff you don't want to do.
The good news is I started feeling better around 10. My last two days have been shitty so I was damn well gonna capitalize on this one. I'm definitely making progress, the last blog I posted about pacing around for an hour before leaving the house. I'm finally stepping out of my comfort zone an ENJOYING seeing people. It really feels amazing to get that back. That alone was enough of a victory to put a smile on my face. Also, instead of nervously walking around the gym picking odd exercises, I wrote a warm up which I stuck to, and then did a fun little strength workout. I'm so thankful to be able to lift again, I beleive short, but intense training has amazing health benefits for sick people. Yoga is awesome for a million reasons, but you simply cannot duplicate the hormonal effects/benefits of heavy lifting or sprinting. Growth hormone and testosterone are not just for bodybuilders, they are both extremely important for HEALING!! Also anti aging, but I'm getting on another tangent so I'll save that for another post. Today's workout was:
-5 minutes elliptical
- foam roll and sun salutations
Warm up (3 rounds)
- BW reverse lunge with twist (pause at bottom for a good active stretch)
-10 Cable external rotations (good arm)
- 5 glute bridges/leg (just for activation purposed)
- 10 leg swings against a wall
GETTING JACKED (jk)
All in a row:
- 3 Back squats at 125lbs
- 3 Kettbell push jerks (The grey one lol, dunno size) Right arm only
- 3 Single arm chin negatives. Right arm only
Rested 3 minutes, did 5 sets.
Pretty high intensity for just starting, but the key here is that the volume is extremely low. Volume makes me sick, not intensity. I may come off as a bit of a bonehead choosing to lift weights having arthritis and all this other nonsense, but I've found it to be all postural. My back is relatively strong still. I can still squat and deadlift ok with strict form, but picking a pen up off the floor with a rounded spine can fuck me right up. Long drives = by FAR the worst thing for my back. You get the idea.
I wish more sick people realized the benefits of exercise if they just pushed through it, because I feel amazing right now. The trick isn't fooling yourself into thinking a 30 minute walk will make you better. Don't get me wrong, it will feel refreshing, but its boring as hell and won't give you the addictive benefits that make you want to keep doing it. I want to re-iterate that although I was lifting "heavy", the total number of reps for ALL my exercises today was only 45. Keeping the volume down is how I am able to make this work! By the time I got home I was hungry as hell, in a cheery mood, and the whole workout took the same time as that 30 minute walk. Of course I lingered and visited at the gym, which was also very therapeutic for me.
Last thing I'll share is my post workout shake for anyone who's interested in what I take. I have a few recipes for concoctions I believe to be optimal, but I'll save those for when I'm REALLY training. For now I keep it simple:
-Not enough volume to necessitate any carbs. If I wanted some I'd use a bit of cherry juice or some waxy maize starch, etc.
- 1 scoop grass fed whey isolate (shouldn't need to explain that one)
- 1 scoop glutamine. I have my mixed thoughts on it's efficacy as a workout supplement, but its cheap as hell, and happens to be VERY important for the gut lining. I take it a few times a day for my crohn's anyways so I throw it in the shake.
- A few big dashes of turmeric. This is a hardcore anti-inflammatory, and since my body is always fighting a raging onslaught of inflammation, anything to dumb down the acute response from training is welcome. It's also something I take all day long for my guts anyways. Google some research, it's actually more effective than advil for arthritis, etc. Some high-end supplement companies are even starting to throw it into their post-workout blends now. I believe you still want that acute inflammatory response during training, but afterwards its time to bring it down. Think of why you jump in the ice bath after lactic workouts (although the research on those is also now SUPER conflicting).
-1/2tsp acai berry powder. This is something new new I'm trying, just something I had on the counter for throwing into smoothies. It's pretty well known for being an extremely potent antioxidant. There have been studies showing cherry juice (also pomegranate and cranberry, but don't quote me on that) being effective in reducing DOMS when taken post workout due to the antioxidants. It's worked for me in the past anyways. My hope/theory is that acai might have the same effect. If it works it will be a lot more convenient to mix in the powder as opposed to bringing actual cherry juice to the gym.
So yeah, great day so far! I'm so thankful to have so many fit people around me to keep me inspired. If my girlfriend can get up and go for a run at 7am when she has a full day ahead of her, I can dam well get to the gym for 30 minutes when its convenient for me and my entire day is wide open.
Like most of these, that turned out being a lot longer than I had planned. Time to eat again, and then make a costco run!
Cheers!
Friday 22 August 2014
139lbs but back to the gym!
I finally feel like I'm well enough for some more regimented exercise. I'm not really trying to exercise more, just now in a quantifiable way. I'm currently at almost the lowest weight I have ever been, and had Lauren take some prison-style shots just for keeping track of progress. It may come off as vain but benchmarks are important. I've always been fascinated by how our bodies can change and adapt according to what we do with them. So here's where I'm currently at:
I tried to stand as natural as possible. You can see a difference in my shoulders if you look closely. I have thoracic outlet syndrome on my left shoulder. Its where your neck, pec, and trap muscles clench up, and the result is pinching off the nerves/arteries that run between your 1st rib and collar bone. You can see my left shoulder hiked up towards my ear sort of, and that's me trying to relax. It gets to tight it shoots into the back of my head, and if I lift my arm overhead too long my hand goes numb. I've had this once before and had aggravated it by pole vaulting that time, this time around it just came out of nowhere and has been this way for months. I think stress might have something to do with it.
Add to that a narrowed disk space in my spine, swollen right ankle (can't see in the pic), and freaking arthritis stiffness everywhere. Even my wrists feel like they have water in them or something. My back is by far the worse though. The stiffness and dull ache is so debilitating it sucks the energy right out of me. This kind of pain just kills your motivation. It isn't acutely painful by any means, but just so dam stiff and sore all the time. When my stomach is in distress, or right before a poop my back hurts so bad I can't even stand upright, my abdominal muscles just want to pull me forward.
So I finally got myself to the gym yesterday, and managed:
-5 minutes of easy rowing
-3x5 shoulder press with the bar, front squat with 40lbs, an chin ups
-thats its!
So you could hardly even call that a workout by most standards, and I totally could have done that from home. The reality is I just wouldn't have got it done at home. Right now creating the habit of exercise is more important than the intensity of the exercise. I got back into the process of making a playlist, mixing up the protein shake, but most importantly getting out the door! I'm still socially anxious. I never want to leave my condo because I don't want to get sick and I'm too proud to be vulnerable in front of people. Beyond that, even when its people that I know understand, it really sucks having pain attacks away from home so I never want to leave. I paced around home almost 2 hours trying to get to the gym but I'm glad I finally made the first step towards getting in shape.
My goal for tomorrow is simply to make an appearance at the gym again. I had IMS today so I likely won't feel up to "lifting" again, but even a bike and stretch would be a positive step. Our sauna will be up and running any time, definitely looking forward to that as well!
Also, Dr. Louie's office got back in touch with me and treatment has been postponed, likely at least a month. I'm actually OK with this, it sounds like he is really making sure he has everything figured out before proceed seeing as I am somewhat of a unique case. I'm sure I can benefit from a few weeks to keep building my strength up before the transplant as anyways.
Wednesday 20 August 2014
Some blogs/pages I reccomend
I thought I'd do a post just to share some of my favorite sites for health and fitness info that I have found personally helpful.
Luke Durward:
Luke is an old pole vaulting rival of mine and a real smart guy! Earlier this year I had noticed him developing his coaching business online, and reading some of his posts made me realize that accountability was what I was lacking in my pursuit of health. This inspired me to start my first blog, the 30-ish day challenge which really made a difference in my life and sort of started this whole mission to cure myself without surgery. Luke has a great website that I would reccomend to anyone, and even has his own Ted talk! He's kind of a big deal....check it out:
Also check out his website at http://lukedurward.com/
Shannon Richards/Infinite Zenergy:
Shannon is a health coaching friend of mine. We met through the gym I work at, Freedom Functional Fitness. When I learned that she suffers with ulcerative colitis and found her own way to health the natural way, I was compelled to connect with here. Shannon and I are a couple of food nerds, and love bouncing ideas off of eachother. She is a creative genius in the kitchen! All of her recipes are crazy healthy and delicious. Shannon helped me realize the power and importance of journaling, and has been a great support through this all.
You can find her website at http://infinitezenergy.org/blog/ and check out her facebook page as well
https://www.facebook.com/infinitezenergy?ref=br_tf .
Precision Nutrition:
I like this page because it has research and evidence-based information, translated into language that we can all understand. I usually just skim the blog for stuff that jumps out at me. Follow them on Facebook or Twitter, there is a wealth of resources on their actual web page as well.
The Bulletproof Executive:
This is the website of the guy who started the butter coffee trend. The coffee thing is definitely his hook, but there is a lot more to what he calls the "bulletproof" lifestyle. I linked the page that has information on the Bulletproof diet. What I find interesting is that his motivation for finding the optimal diet wasn't for body composition, athletics, or even to cure a disease, but for optimal brain performance as a CEO. After spending thousands and doing a TON of research over many years, what he came up with resembles the paleo diet, but with some interesting tweaks. The podcasts are my favorite, he gets some awesome guests with very informative content.
There are lots of other sites I frequent but these are my favorites and that's all the writing I feel up to for now. This was mostly about diet, next will be my favorite exercise/training pages.
Luke Durward:
Luke is an old pole vaulting rival of mine and a real smart guy! Earlier this year I had noticed him developing his coaching business online, and reading some of his posts made me realize that accountability was what I was lacking in my pursuit of health. This inspired me to start my first blog, the 30-ish day challenge which really made a difference in my life and sort of started this whole mission to cure myself without surgery. Luke has a great website that I would reccomend to anyone, and even has his own Ted talk! He's kind of a big deal....check it out:
Also check out his website at http://lukedurward.com/
Shannon Richards/Infinite Zenergy:
Shannon is a health coaching friend of mine. We met through the gym I work at, Freedom Functional Fitness. When I learned that she suffers with ulcerative colitis and found her own way to health the natural way, I was compelled to connect with here. Shannon and I are a couple of food nerds, and love bouncing ideas off of eachother. She is a creative genius in the kitchen! All of her recipes are crazy healthy and delicious. Shannon helped me realize the power and importance of journaling, and has been a great support through this all.
You can find her website at http://infinitezenergy.org/blog/ and check out her facebook page as well
https://www.facebook.com/infinitezenergy?ref=br_tf .
Precision Nutrition:
I like this page because it has research and evidence-based information, translated into language that we can all understand. I usually just skim the blog for stuff that jumps out at me. Follow them on Facebook or Twitter, there is a wealth of resources on their actual web page as well.
The Bulletproof Executive:
This is the website of the guy who started the butter coffee trend. The coffee thing is definitely his hook, but there is a lot more to what he calls the "bulletproof" lifestyle. I linked the page that has information on the Bulletproof diet. What I find interesting is that his motivation for finding the optimal diet wasn't for body composition, athletics, or even to cure a disease, but for optimal brain performance as a CEO. After spending thousands and doing a TON of research over many years, what he came up with resembles the paleo diet, but with some interesting tweaks. The podcasts are my favorite, he gets some awesome guests with very informative content.
There are lots of other sites I frequent but these are my favorites and that's all the writing I feel up to for now. This was mostly about diet, next will be my favorite exercise/training pages.
Thursday 14 August 2014
On my way
Things are coming along, slowly but surely. This is good, because as I've found in the past the changes that happen overnight never last anyways. I've managed to become more active and am definitely eating more. The slow transition is key, because if I have a good day and exercise too much, I'll be so hungry I'll take down way more food than my gut is ready to handle. Don't get me wrong I welcome the appetite, but going from almost fasting every day to large amounts of calories right away is going to cause me pain, no matter how high quality the food. So rather than starting even the most basic gym routine, I've been scattering extra bits of movement into my day with things like:
-Walking more
-Doing the odd random set of 10 squats in the kitchen
-Stretching a tight muscle while I wait for something in the microwave
-Helping dad clean the shed
-Cleaning the condo
-Going camping
I know you could hardly consider this stuff "starting to exercise" but I've been a serious vegetable lately. Beyond that, its more about the intention than how much is getting done. Its about being conscious of my activity levels so I can monitor the correlation to how it makes me feel. I'm making an effort to move more, and my body is giving me the green light so far. My back/ankles/shoulders still hurt just as bad, but these simple activities don't aggravate them any further. 3 weeks ago just unloading camping gear out of the truck could have thrown my back into spasm, so just being able to do it now is a welcome form of exercise that I am thankful for.
My biggest challenge has been learning to calm down and slow down. I really have no reason to be worried anymore, but I'm still constantly on edge with my guard up. It's just a result of habit I suppose. I've been looking out for myself the last two years, constantly searching, digging, reaching for answers, my brain never stops. Like I said I have no rational reason to be worried anymore, but my brain is just so used to being in overdrive its taking some serious work to turn it off and just let my body heal itself. I can never sit still, and social situations still make me anxious. Even if I'm doing whatever I want on my own can't stay in one place for long, so add people and that's why watching a movie at a theater or playing a board game is so unappealing to me. I think about part of this is just my own nature, I've never been able to sit still and I have always been independent, but it's been so much worse in recent months. I'm constantly trying to distract myself from myself, or from the present. Always making tomorrow's to do list instead of just going to bed, and I'm scared to go to bed without the tv on because I don't want to be alone in my own head, etc. I know how unhealthy this is and I'm working on it, and to be honest its one of the most difficult things I have ever had to do. I'm still dancing around committing to a consistent mediation practice, and I'll get there. For now I've found the outdoors to be BY FAR the most effective tool for distracting myself in "healthy" way if there is such a thing.
I say this because don't get me wrong, I'm not going out there and meditating, or even doing yoga. I'm still afraid of being alone with my thoughts so I still just go go go. The difference is that rather than making to do lists and googling clinical trials and looking for supplements on amazon, I'm setting up the tent, warming up a pot of tea, quietly tying my fishing lines, and chopping kindling all while surrounded by nature. See the difference? I'm still going to the bathroom too much and my body aches all over, but I'm in an environment where I feel safe just being myself. I'm still constantly moving and "doing" rather than "being" but camping still just feels like the right choice.
My worry is that my lack of any responsibilities right now is just allowing me to run away and not work on these issues. I can't handle sitting down for a family meal for an hour so I just bail and go camping by myself for the night. As far as my health goes, if that family meal and board game causes me stress (which it does) than I guess camping is the right move, it just gets lonely being like this! Whether I'm becoming an avoider or I'm just paranoid again, either way I feel extremely lucky to have had the freedom to get out there and live the last couple of weeks! So without being negative anymore, here are some pictures from a few small excursions I have been able to enjoy.
-Walking more
-Doing the odd random set of 10 squats in the kitchen
-Stretching a tight muscle while I wait for something in the microwave
-Helping dad clean the shed
-Cleaning the condo
-Going camping
I know you could hardly consider this stuff "starting to exercise" but I've been a serious vegetable lately. Beyond that, its more about the intention than how much is getting done. Its about being conscious of my activity levels so I can monitor the correlation to how it makes me feel. I'm making an effort to move more, and my body is giving me the green light so far. My back/ankles/shoulders still hurt just as bad, but these simple activities don't aggravate them any further. 3 weeks ago just unloading camping gear out of the truck could have thrown my back into spasm, so just being able to do it now is a welcome form of exercise that I am thankful for.
My biggest challenge has been learning to calm down and slow down. I really have no reason to be worried anymore, but I'm still constantly on edge with my guard up. It's just a result of habit I suppose. I've been looking out for myself the last two years, constantly searching, digging, reaching for answers, my brain never stops. Like I said I have no rational reason to be worried anymore, but my brain is just so used to being in overdrive its taking some serious work to turn it off and just let my body heal itself. I can never sit still, and social situations still make me anxious. Even if I'm doing whatever I want on my own can't stay in one place for long, so add people and that's why watching a movie at a theater or playing a board game is so unappealing to me. I think about part of this is just my own nature, I've never been able to sit still and I have always been independent, but it's been so much worse in recent months. I'm constantly trying to distract myself from myself, or from the present. Always making tomorrow's to do list instead of just going to bed, and I'm scared to go to bed without the tv on because I don't want to be alone in my own head, etc. I know how unhealthy this is and I'm working on it, and to be honest its one of the most difficult things I have ever had to do. I'm still dancing around committing to a consistent mediation practice, and I'll get there. For now I've found the outdoors to be BY FAR the most effective tool for distracting myself in "healthy" way if there is such a thing.
I say this because don't get me wrong, I'm not going out there and meditating, or even doing yoga. I'm still afraid of being alone with my thoughts so I still just go go go. The difference is that rather than making to do lists and googling clinical trials and looking for supplements on amazon, I'm setting up the tent, warming up a pot of tea, quietly tying my fishing lines, and chopping kindling all while surrounded by nature. See the difference? I'm still going to the bathroom too much and my body aches all over, but I'm in an environment where I feel safe just being myself. I'm still constantly moving and "doing" rather than "being" but camping still just feels like the right choice.
My worry is that my lack of any responsibilities right now is just allowing me to run away and not work on these issues. I can't handle sitting down for a family meal for an hour so I just bail and go camping by myself for the night. As far as my health goes, if that family meal and board game causes me stress (which it does) than I guess camping is the right move, it just gets lonely being like this! Whether I'm becoming an avoider or I'm just paranoid again, either way I feel extremely lucky to have had the freedom to get out there and live the last couple of weeks! So without being negative anymore, here are some pictures from a few small excursions I have been able to enjoy.
Wednesday 30 July 2014
Tired of being tired
This low energy thing is getting old. I'm always amazed at how dynamic this disease is, and how many factors there are. One thing can be improving while another is getting worse. I'm definitely better than I was a month ago, but I'm still very limited. I spent most of my day yesterday grocery shopping.
I said "my" day rather than "the" day because they aren't the same thing. "My day" is the select hours within the actual day that I feel strong enough to get off the couch. I look fine, and my spirits seem to be up, but I'm still not able to do a whole lot. I really need to pace my energy properly, and it's easier said than done.
So poor little Lane is tired because he went shopping....if you are rolling your eyes think again.
-Every single car ride to 8th street is risking the humiliation of pooping my pants or otherwise.
-A couple of weeks ago I threw up into an empty travel mug at a red light, then proceeded to my doctors appointment and carried on with my day.
-Having to "go" all the time causes so much stress and frustration. I'm comfortable with my condition, but it fucking sucks when you leave your shopping cart to run across the store to the bathroom, just to come back (granted, 20 minutes later) and find the staff took it away.
-Or waiting in line for 10 minutes at the bank teller, making it aaaalmost to the front of the line, and then having to run away and find a washroom (they usually don't have public ones so I either have to seriously bolt, or embarrassingly beg and plead the staff to let me use theirs). In situations like this by the time I'm out of the bathroom I'm exhausted, embarrassed, and sad so I usually just go home instead of getting back in line
- Not to mention the stress of feeling I always need to justify my behavior!!!
Just stop for a second and try think of what kind of stress levels these situations can cause. Now think of those acute jumps in stress happening multiple times per day and the compounding effect that it would have over a person for TWO YEARS! At this point I'm chronically stressed, really on-edge all the time. I have a seriously hard time calming down.
So yeah, literally all I did yesterday was make a trip to the health food store, to the hospital for bloodwork, and then to superstore, but by the time I got home I was done. Driving, crowds, lines, and not knowing where the nearest bathroom is all make me extremely anxious so it was a big day. I work really hard to listen to my doctor for what foods to eat and carefully plan out meals, but $400 worth of groceries later all I wanted was a nap and someone to make me soup. I didn't even have it in me to unload the dishwasher, let alone preparing anything. I pride myself on eating nothing processed or read-made, but I always underestimate the labor involved in actually preparing healthy food. It just left me feeling that I honestly would have been better off sleeping all day and eating "regular" food.
What's better in the big picture? Being tired and strung out to the max with an empty belly and dirty house full of unprepared superfoods, OR, being calm and well rested with a belly full of cereal. I just don't know anymore.
On a more positive note I did get out this past weekend. Lauren, Mark, and I went to Lauren's cabin at Candle lake. We also camped a night at one my my favorites, Steepbank lake. I am so thankful for my friends, without them I wouldn't be able to do these things that I love. They literally did all the work, packing and unloading, cutting the firewood, etc, and let me just lay around. I felt so lucky!!
It was very peaceful up there. People try to advise me against going out and living life because I am sick, but what do you think is a better situation for me, being sick as a dog at my own private campsite next to the water, or being sick as a dog in the environments I described to you a few paragraphs ago?
I said "my" day rather than "the" day because they aren't the same thing. "My day" is the select hours within the actual day that I feel strong enough to get off the couch. I look fine, and my spirits seem to be up, but I'm still not able to do a whole lot. I really need to pace my energy properly, and it's easier said than done.
So poor little Lane is tired because he went shopping....if you are rolling your eyes think again.
-Every single car ride to 8th street is risking the humiliation of pooping my pants or otherwise.
-A couple of weeks ago I threw up into an empty travel mug at a red light, then proceeded to my doctors appointment and carried on with my day.
-Having to "go" all the time causes so much stress and frustration. I'm comfortable with my condition, but it fucking sucks when you leave your shopping cart to run across the store to the bathroom, just to come back (granted, 20 minutes later) and find the staff took it away.
-Or waiting in line for 10 minutes at the bank teller, making it aaaalmost to the front of the line, and then having to run away and find a washroom (they usually don't have public ones so I either have to seriously bolt, or embarrassingly beg and plead the staff to let me use theirs). In situations like this by the time I'm out of the bathroom I'm exhausted, embarrassed, and sad so I usually just go home instead of getting back in line
- Not to mention the stress of feeling I always need to justify my behavior!!!
Just stop for a second and try think of what kind of stress levels these situations can cause. Now think of those acute jumps in stress happening multiple times per day and the compounding effect that it would have over a person for TWO YEARS! At this point I'm chronically stressed, really on-edge all the time. I have a seriously hard time calming down.
So yeah, literally all I did yesterday was make a trip to the health food store, to the hospital for bloodwork, and then to superstore, but by the time I got home I was done. Driving, crowds, lines, and not knowing where the nearest bathroom is all make me extremely anxious so it was a big day. I work really hard to listen to my doctor for what foods to eat and carefully plan out meals, but $400 worth of groceries later all I wanted was a nap and someone to make me soup. I didn't even have it in me to unload the dishwasher, let alone preparing anything. I pride myself on eating nothing processed or read-made, but I always underestimate the labor involved in actually preparing healthy food. It just left me feeling that I honestly would have been better off sleeping all day and eating "regular" food.
What's better in the big picture? Being tired and strung out to the max with an empty belly and dirty house full of unprepared superfoods, OR, being calm and well rested with a belly full of cereal. I just don't know anymore.
On a more positive note I did get out this past weekend. Lauren, Mark, and I went to Lauren's cabin at Candle lake. We also camped a night at one my my favorites, Steepbank lake. I am so thankful for my friends, without them I wouldn't be able to do these things that I love. They literally did all the work, packing and unloading, cutting the firewood, etc, and let me just lay around. I felt so lucky!!
It was very peaceful up there. People try to advise me against going out and living life because I am sick, but what do you think is a better situation for me, being sick as a dog at my own private campsite next to the water, or being sick as a dog in the environments I described to you a few paragraphs ago?
Thursday 24 July 2014
The stuff you don't see.
People that suffer with inflammatory bowel disease really become masters of disguise. We never talk about it, because we probably don't feel like discussing bloody poop all the time, not to mention its mostly internal, so you do not see our pain. This stirs up a lot of internal conflict, feeling like a hypocrite all the time.
See those pictures of me out at the lake? I didn't include that part where I needed to swallow a whole box full of immodium just to get out of my apartment for the day.
Do I seem a little quiet or a little grumpy at the dinner table? Probably because the food you put in front of me is trying to work its way through my narrowed intestines and it's currently hard for me to breathe.
Do I seem really shifty and anxious all of a sudden, pacing, etc? My abdomen is probably tensing up because I'm going to have a pain attack in 20 minutes. Sorry but at this point anything you say to me is going in one ear and right out the other. I'm in fight or flight at this point and my mind won't function right until I (literally) get this out of my system. This REALLY sucks I'm at the bank teller, or on the phone with someone, etc.
You may have even seen Lane the cheery instructor teaching weightlifting at Freedom. The part you don't know it that I may have only had half a smoothie that day because of my nausea. Even if I had an appetite, I probably still starved myself that day so try avoid any pain attacks from happening while I'm coaching you.
This photo was taken two summers ago when I was dealing with a perianal fistula and abscess, which is supposed to be as painful as childbirth (difference is childbirth doesn't last for 3 months). The only way I got out of the house was being WHACKED out on dilaudid, which is 8x stronger than morphine. I soon became a depressed, opiate addicted vegetable. What you see or hear from me isn't always the full story....
See those pictures of me out at the lake? I didn't include that part where I needed to swallow a whole box full of immodium just to get out of my apartment for the day.
Do I seem a little quiet or a little grumpy at the dinner table? Probably because the food you put in front of me is trying to work its way through my narrowed intestines and it's currently hard for me to breathe.
Do I seem really shifty and anxious all of a sudden, pacing, etc? My abdomen is probably tensing up because I'm going to have a pain attack in 20 minutes. Sorry but at this point anything you say to me is going in one ear and right out the other. I'm in fight or flight at this point and my mind won't function right until I (literally) get this out of my system. This REALLY sucks I'm at the bank teller, or on the phone with someone, etc.
You may have even seen Lane the cheery instructor teaching weightlifting at Freedom. The part you don't know it that I may have only had half a smoothie that day because of my nausea. Even if I had an appetite, I probably still starved myself that day so try avoid any pain attacks from happening while I'm coaching you.
This photo was taken two summers ago when I was dealing with a perianal fistula and abscess, which is supposed to be as painful as childbirth (difference is childbirth doesn't last for 3 months). The only way I got out of the house was being WHACKED out on dilaudid, which is 8x stronger than morphine. I soon became a depressed, opiate addicted vegetable. What you see or hear from me isn't always the full story....
Wednesday 23 July 2014
Good news!
As of last Friday my CRP is down to 56!! That's the marker used to measure systemic inflammation. Normal safe range is 0-3, so I'm clearly still in trouble, but what amazes me is that I cut it in half in just 3 weeks! My previous test was 101. Since then my stress level has dropped tremendously, and I have been able to afford my extensive supplement regimen again. Sure enough, I'm feeling better already. I knew these were major factors that contribute to how I feel, but again what surprised me is how fast this is happening. If I just cut my inflammation in half in 3 weeks, what will the next month bring? I'm feeling very motivated, the future is looking exciting again!
Speaking of the future, still no word from Dr. Louie in Calgary. Everyone has been asking me when treatment will start, and I simply do not know yet. It's frustrating but communication is just impossible with the medical system. For all I know right now I could start treatment next week, or at Christmas. Will keep you all updated for sure though.
Numbers aside (they aren't the be all end all) , I really am feeling better these days. Not having to worry about working during these times has dropped my stress so much I feel like a different person already. I'm still in a lot of pain but I'm continuing to sleep better, eating more, and even getting in the odd bike ride!
I've spent a few more days at home which is always nice, especially when the weather is so great!
Speaking of the future, still no word from Dr. Louie in Calgary. Everyone has been asking me when treatment will start, and I simply do not know yet. It's frustrating but communication is just impossible with the medical system. For all I know right now I could start treatment next week, or at Christmas. Will keep you all updated for sure though.
Numbers aside (they aren't the be all end all) , I really am feeling better these days. Not having to worry about working during these times has dropped my stress so much I feel like a different person already. I'm still in a lot of pain but I'm continuing to sleep better, eating more, and even getting in the odd bike ride!
I've spent a few more days at home which is always nice, especially when the weather is so great!
Tuesday 15 July 2014
Home for a bit
Morning! I'm currently enjoying a protein shake out in a lawn chair in the front yard. I'm not working right now so I decided to drive home for a couple nights. It's gorgeous out here!
I am definitely on the up again. I can't even describe how much better I feel with financial stress being gone, and knowing that people understand my situation now. I felt all this pressure to work while trying to put crohn's into remission at the same time and it was driving me crazy.
My ankles and feet are doing much better. I almost have range of motion back and the swelling is gone. Now that I can afford it I started some decompression treatments for my back again, as well as Chinese style acupuncture which is helping tremendously. Also continuing to sleep better! It feels so good to be resting again. Sticking to protein shakes, soups, rice, smoothies, etc has helped my abdominal pain significantly as well.
It really is amazing how much healing I can get done myself, and how much progress I can make without drugs. If I manage my stress, eat the right foods, and take enough of the right supplements- not just once but consistently for a few days, I start to feel seriously better. Its just that all of those factors must be in place, all the stars need to align. I can feel way better in a week, but it goes both ways. If even one of those factors is neglected I can trainwreck just as easily. The trick is trying to heal slowly and sustainably.
The hardest part about feeling good is the internal conflict, and the guilt I feel on those good days. As soon as I feel well, I always try to capitalize on it and enjoy the things I've been missing, but then I feel like a hypocrite because of everything people know about me being sick. For example I bail on things ALL the time because I'm sick, whether its a family supper, going to watch a brother's ball game, even a work shift, etc. It happens a lot because I am usually in discomfort or pain of some sort. My good days, or good hours I should say, have been so few and far between that when it happens I want to go for a bike ride, go fishing, or even work out! On top of that, when I want to share with everyone how exhilarating that bike ride was (that I was SO thankful for), I feel like I can;t because I very well could have just told them I was in serious pain earlier that day. See what I'm saying? People do not understand that with crohn's it is possible to be surprisingly functional while still severely ill. That is why it is so easy to disguise. I'm over hiding it now though, it feels so much better to be open.
Lauren is in Ottawa for the combined events Pan-am cup right now! She gets to compete against the worlds best on Thursday and Friday. While she's gone I've moved home for a couple days, I'll plan to schedule treatments all for Thursday or Friday so I don't have to make too many trips. That's it for now though, thanks for reading!
I am definitely on the up again. I can't even describe how much better I feel with financial stress being gone, and knowing that people understand my situation now. I felt all this pressure to work while trying to put crohn's into remission at the same time and it was driving me crazy.
My ankles and feet are doing much better. I almost have range of motion back and the swelling is gone. Now that I can afford it I started some decompression treatments for my back again, as well as Chinese style acupuncture which is helping tremendously. Also continuing to sleep better! It feels so good to be resting again. Sticking to protein shakes, soups, rice, smoothies, etc has helped my abdominal pain significantly as well.
It really is amazing how much healing I can get done myself, and how much progress I can make without drugs. If I manage my stress, eat the right foods, and take enough of the right supplements- not just once but consistently for a few days, I start to feel seriously better. Its just that all of those factors must be in place, all the stars need to align. I can feel way better in a week, but it goes both ways. If even one of those factors is neglected I can trainwreck just as easily. The trick is trying to heal slowly and sustainably.
The hardest part about feeling good is the internal conflict, and the guilt I feel on those good days. As soon as I feel well, I always try to capitalize on it and enjoy the things I've been missing, but then I feel like a hypocrite because of everything people know about me being sick. For example I bail on things ALL the time because I'm sick, whether its a family supper, going to watch a brother's ball game, even a work shift, etc. It happens a lot because I am usually in discomfort or pain of some sort. My good days, or good hours I should say, have been so few and far between that when it happens I want to go for a bike ride, go fishing, or even work out! On top of that, when I want to share with everyone how exhilarating that bike ride was (that I was SO thankful for), I feel like I can;t because I very well could have just told them I was in serious pain earlier that day. See what I'm saying? People do not understand that with crohn's it is possible to be surprisingly functional while still severely ill. That is why it is so easy to disguise. I'm over hiding it now though, it feels so much better to be open.
Lauren is in Ottawa for the combined events Pan-am cup right now! She gets to compete against the worlds best on Thursday and Friday. While she's gone I've moved home for a couple days, I'll plan to schedule treatments all for Thursday or Friday so I don't have to make too many trips. That's it for now though, thanks for reading!
Monday 7 July 2014
Erythema Nodosum, aka lumpy shins/calves
I thought I would write a quick blurb on one of the more rare symptoms I have called erythema nodosum. The way I describe it is like hard, bruise-like lumps under my shins and calves. A lot of ankle and foot swelling usually comes along with it too. It is very rare, here is a more formal description:
"Erythema nodosum, a painful disorder of the subcutaneous fat, is the most common type of panniculitis. Generally, it is idiopathic, although the most common identifiable cause is streptococcal pharyngitis. Erythema nodosum may be the first sign of a systemic disease such as tuberculosis, bacterial or deep fungal infection, sarcoidosis, inflammatory bowel disease, or cancer."
"In addition to infectious colitis, other gastrointestinal diseases, such as ulcerative colitis and Crohn's disease, are associated with erythema nodosum. Erythema nodosum with abdominal pain and diarrhea may reflect acute flare-ups. Firm control of colitis may prevent further erythema nodosum; suppression of erythema nodosum in the patient may be considered an indicator for disease management.22 As many as 50 percent of patients with Behçet's syndrome have associated erythema nodosum.4 The biopsy-proven coexistence of Sweet's syndrome and erythema nodosum has been documented.23"
(http://www.aafp.org/afp/2007/0301/p695.html)
It's mostly frustrating because I would like to move around a lot more! Ice and elevation helps the swelling but not the pain. Its just a matter of systemic inflammation that will calm down as my whole disease calms down.
Just thought I would share this because its another manifestation of this disease that people don't see, yet can be very debilitating. Its not just a gut disease people!!!
As for how I'm feeling today, definitely still low energy, but I'm not feeling quite as depressed as usual. I'm still just lying around on the computer, but my mood is improving. Definitely having a better day overall!
"Erythema nodosum, a painful disorder of the subcutaneous fat, is the most common type of panniculitis. Generally, it is idiopathic, although the most common identifiable cause is streptococcal pharyngitis. Erythema nodosum may be the first sign of a systemic disease such as tuberculosis, bacterial or deep fungal infection, sarcoidosis, inflammatory bowel disease, or cancer."
"In addition to infectious colitis, other gastrointestinal diseases, such as ulcerative colitis and Crohn's disease, are associated with erythema nodosum. Erythema nodosum with abdominal pain and diarrhea may reflect acute flare-ups. Firm control of colitis may prevent further erythema nodosum; suppression of erythema nodosum in the patient may be considered an indicator for disease management.22 As many as 50 percent of patients with Behçet's syndrome have associated erythema nodosum.4 The biopsy-proven coexistence of Sweet's syndrome and erythema nodosum has been documented.23"
(http://www.aafp.org/afp/2007/0301/p695.html)
It's mostly frustrating because I would like to move around a lot more! Ice and elevation helps the swelling but not the pain. Its just a matter of systemic inflammation that will calm down as my whole disease calms down.
Just thought I would share this because its another manifestation of this disease that people don't see, yet can be very debilitating. Its not just a gut disease people!!!
As for how I'm feeling today, definitely still low energy, but I'm not feeling quite as depressed as usual. I'm still just lying around on the computer, but my mood is improving. Definitely having a better day overall!
Sunday 6 July 2014
Weekly update
I'm mostly just blogging right now because I have a video I really want to share, but its been a few days and I know people are reading this bad boy so I'll give a quick update:
Good- I'm not only sleeping better, but also resting more. I feel like I've done a good job of de-stressing and am a lot calmer than I have been in recent weeks.
Bad- I'm still SUPER sick. Lots of intense pain lately, the cramping and bloating isn't a good time. Worst of all however is the lack of energy. I seriously need to get my iron levels back up because I'm a total zombie. Getting up off the couch gives me a head rush and going up the stairs makes me dizzy. Lack of motivation in my opinion is the worst symptom a person can have. Things like taking handfuls of pills, drinking nasty green juice, and driving yourself to acupuncture appointments aren't all that fun even when your healthy, let alone when you are having troubles getting out of bed.
Ending with more good- If you are reading this you are probably aware of the fundraising campaign that Lauren started for me. Told you she was the best girlfriend ever. We have raised over 4 gran in less than 12 hours! Insane! I'm honestly too overwhelmed for words at this point. This has alleviated so much stress. I'm getting in touch with Dr. Louie on Tuesday morning and hopefully we can get started right away!
Anyways this is the video I was talking about. This girl is awesome!!! She frickin nailed it! I know exactly what shes talking about. If you watch just one link that I share, make it this one:
Everything from getting good at hiding it, never talking about it, looking fine, etc. It's like she took the words right out of my mouth!!
Good- I'm not only sleeping better, but also resting more. I feel like I've done a good job of de-stressing and am a lot calmer than I have been in recent weeks.
Bad- I'm still SUPER sick. Lots of intense pain lately, the cramping and bloating isn't a good time. Worst of all however is the lack of energy. I seriously need to get my iron levels back up because I'm a total zombie. Getting up off the couch gives me a head rush and going up the stairs makes me dizzy. Lack of motivation in my opinion is the worst symptom a person can have. Things like taking handfuls of pills, drinking nasty green juice, and driving yourself to acupuncture appointments aren't all that fun even when your healthy, let alone when you are having troubles getting out of bed.
Ending with more good- If you are reading this you are probably aware of the fundraising campaign that Lauren started for me. Told you she was the best girlfriend ever. We have raised over 4 gran in less than 12 hours! Insane! I'm honestly too overwhelmed for words at this point. This has alleviated so much stress. I'm getting in touch with Dr. Louie on Tuesday morning and hopefully we can get started right away!
Anyways this is the video I was talking about. This girl is awesome!!! She frickin nailed it! I know exactly what shes talking about. If you watch just one link that I share, make it this one:
Everything from getting good at hiding it, never talking about it, looking fine, etc. It's like she took the words right out of my mouth!!
Wednesday 2 July 2014
Still Burnt.
I'm getting tired of being tired. Bored of being tired. There are 100 things I can and should be doing to feel better right now but I'm seriously lacking motivation these days. I'm so tired and weak that I don't even want to cook for myself anymore, and things like taking the garbage out just seem like massive tasks. I know I'm not myself because I really just want to lie around and watch TV all day. Usually if I'm burning through seasons of a show its because I'm physically unable to go out and do stuff, but right now I literally just want to lie around and watch TV. Nothing interests me and it sucks!
Lauren and I went home and had the acreage to ourselves for the past weekend. I ate like crap, but I went out there to de-stress, not to work on my diet. I splurged on a bunch of ice cream and ate way too much baking but at least got it out of my system I think. It rained basically the whole time, which is totally fine because all I did was sleep. I was definitely wound up from weeks previous because I basically passed out the entire time we were there. Maybe I'm still catching up on sleep debt? Despite the weekend like I said I am still exhausted all the time.
My foot/ankle/achilles pain was bad over the weekend as well. For a couple of days my feet were just throbbing and burning hot. Ice and elevation definitely helps with the size, but not really the mobility or the pain. Other than that there isn't much I can do because its just a result of the systemic inflammation I'm already dealing with.
Finances are still a frustrating struggle. I've already had to give shifts away this week because either my ankles are in too much pain or I'm too fatigued to be on my feet coaching. Frustration isn't a strong enough word to describe how it feels to constantly bail on shifts you were just asking for because your broke. If I could just afford the treatments and supplements I needed, I would have the energy and the mobility to work again. One week I'm asking my boss for more shifts because I can't pay my bills, then the next week I'm getting rid of all them on short notice trying to explain to staff members that I am sick. All while I look perfectly normal and they start to think I'm full of shit. Maybe I'm just paranoid, I tend to be, but I just hate how nobody ever truly gets it.
On a positive note, the weather finally improved! I forced myself to go out and get some sun on the lawn today. Its supposed to be nice all week so I'm going to take advantage of that.
Lauren had plenty of friends to keep her occupied when I slept all weekend:
Speaking of which, free kittens available!
Lauren and I went home and had the acreage to ourselves for the past weekend. I ate like crap, but I went out there to de-stress, not to work on my diet. I splurged on a bunch of ice cream and ate way too much baking but at least got it out of my system I think. It rained basically the whole time, which is totally fine because all I did was sleep. I was definitely wound up from weeks previous because I basically passed out the entire time we were there. Maybe I'm still catching up on sleep debt? Despite the weekend like I said I am still exhausted all the time.
My foot/ankle/achilles pain was bad over the weekend as well. For a couple of days my feet were just throbbing and burning hot. Ice and elevation definitely helps with the size, but not really the mobility or the pain. Other than that there isn't much I can do because its just a result of the systemic inflammation I'm already dealing with.
Finances are still a frustrating struggle. I've already had to give shifts away this week because either my ankles are in too much pain or I'm too fatigued to be on my feet coaching. Frustration isn't a strong enough word to describe how it feels to constantly bail on shifts you were just asking for because your broke. If I could just afford the treatments and supplements I needed, I would have the energy and the mobility to work again. One week I'm asking my boss for more shifts because I can't pay my bills, then the next week I'm getting rid of all them on short notice trying to explain to staff members that I am sick. All while I look perfectly normal and they start to think I'm full of shit. Maybe I'm just paranoid, I tend to be, but I just hate how nobody ever truly gets it.
On a positive note, the weather finally improved! I forced myself to go out and get some sun on the lawn today. Its supposed to be nice all week so I'm going to take advantage of that.
Lauren had plenty of friends to keep her occupied when I slept all weekend:
Friday 27 June 2014
Bloodwork/Stuck at Iron
Well as predicted, blood results are pretty bad. Lots of stuff is too high or too low. Bummer about the iron is although its so low, I can't get any more infusions after today because my ferritin is extremely high. Can't seem to win here.
I always blame my dysfunctional gut for not absorbing iron, and I do lose a lot of blood through bowel movements some days, but I have definitely been slacking on getting enough dietary iron. My levels were always better (not good, but better) when I was juicing regularly. I still have salads and red meat every once and a while, but I don't do well with solids right now and juicing greens is vastly more potent and absorb-able. Like I said in the last blog, this is a bit of a wake up call to get my ass back on track.
I got to the hospital at 8:45, but the pharmacy didnt get my iron made up until 10:30. Once they get it hooked up its a 3 hour infusion. So boring! I try to sleep if I can, but its crazy busy in here today with IV's beeping like crazy. I've got friends visiting today though.
Anyways here are the lab results. Good news is my vitamin D mega-dosing is working! 50 000 IU's twice a week and nowhere near toxicity!
I always blame my dysfunctional gut for not absorbing iron, and I do lose a lot of blood through bowel movements some days, but I have definitely been slacking on getting enough dietary iron. My levels were always better (not good, but better) when I was juicing regularly. I still have salads and red meat every once and a while, but I don't do well with solids right now and juicing greens is vastly more potent and absorb-able. Like I said in the last blog, this is a bit of a wake up call to get my ass back on track.
I got to the hospital at 8:45, but the pharmacy didnt get my iron made up until 10:30. Once they get it hooked up its a 3 hour infusion. So boring! I try to sleep if I can, but its crazy busy in here today with IV's beeping like crazy. I've got friends visiting today though.
Anyways here are the lab results. Good news is my vitamin D mega-dosing is working! 50 000 IU's twice a week and nowhere near toxicity!
Thursday 26 June 2014
Burnt.
Ugh. I am worn out. Time for a vent.
It's been a tough week. My health is really slipping again, I was trying to exercise but cannot recover from even the lightest activity. I am averaging 4-6 hours of interrupted sleep every night, spending the night on the living room floor with a heating pad because it is easier on my back. My unexplained knee injury is giving me troubles, and my ankles/lower legs are swelling up again. Its called erethema nodosum if you care to google it. Its like little bumps under my skin that feel like bruises and swell up. My skin is breaking out everywhere, acne on my face/shoulders and folliculitis all over my legs. Appetite sucks, any time I eat anything solid or substantial I start feeling a lot of discomfort and need to lie down for a few minutes. I know my iron is definitely low, I haven't had in checked in weeks (no excuses, I've just totally been slacking). If I don't keep up my infusions I just simply don't absorb it. I can tell I'm anemic again, just simple things like climbing a set of stairs gives me a head rush and makes me dizzy.
I've been feeling a lot of stress anxiety over this. I didn't work a single shift in May, and now I am too weak to work more than an hour a day. My employer doesn't want to give me shifts or clients because I am always sick now. Financial stress is definitely a huge part of all of this, but also just the pressure to get better. I've been trying to be some sort of holistic health champion on a mission to get better without surgery, putting so much money and effort into this mission that I truly believe in, but I currently have nothing to show for it. I feel like everyone is going to start thinking I'm full of shit because I'm saying all of this stuff works, yet I'm on a pretty bad decline currently.
Do I think I can get out of this spiral? Absolutely. This is a good wake up call I guess. Will blog again as soon as I get the bloodwork results. I decided to pull the trigger and go for the fecal therapy, so I contacted Dr. Louie to see if he is still interested. At the very least, I am on a wait list to get on ECP light therapy hopefully this fall. Worst case scenario I know I can tough it out until then.
On a positive note, Lauren and I both have 4 days off in a row! Super pumped about this. Mom, Dad, and Reid are off to Montana for a baseball tournament so Lauren and I will go home to look after the acreage. Its going to be so nice to have the place to ourselves and do whatever we feel like for 4 whole days! I plan on resting up as much as possible.
Will blog again soon.
It's been a tough week. My health is really slipping again, I was trying to exercise but cannot recover from even the lightest activity. I am averaging 4-6 hours of interrupted sleep every night, spending the night on the living room floor with a heating pad because it is easier on my back. My unexplained knee injury is giving me troubles, and my ankles/lower legs are swelling up again. Its called erethema nodosum if you care to google it. Its like little bumps under my skin that feel like bruises and swell up. My skin is breaking out everywhere, acne on my face/shoulders and folliculitis all over my legs. Appetite sucks, any time I eat anything solid or substantial I start feeling a lot of discomfort and need to lie down for a few minutes. I know my iron is definitely low, I haven't had in checked in weeks (no excuses, I've just totally been slacking). If I don't keep up my infusions I just simply don't absorb it. I can tell I'm anemic again, just simple things like climbing a set of stairs gives me a head rush and makes me dizzy.
I've been feeling a lot of stress anxiety over this. I didn't work a single shift in May, and now I am too weak to work more than an hour a day. My employer doesn't want to give me shifts or clients because I am always sick now. Financial stress is definitely a huge part of all of this, but also just the pressure to get better. I've been trying to be some sort of holistic health champion on a mission to get better without surgery, putting so much money and effort into this mission that I truly believe in, but I currently have nothing to show for it. I feel like everyone is going to start thinking I'm full of shit because I'm saying all of this stuff works, yet I'm on a pretty bad decline currently.
Do I think I can get out of this spiral? Absolutely. This is a good wake up call I guess. Will blog again as soon as I get the bloodwork results. I decided to pull the trigger and go for the fecal therapy, so I contacted Dr. Louie to see if he is still interested. At the very least, I am on a wait list to get on ECP light therapy hopefully this fall. Worst case scenario I know I can tough it out until then.
On a positive note, Lauren and I both have 4 days off in a row! Super pumped about this. Mom, Dad, and Reid are off to Montana for a baseball tournament so Lauren and I will go home to look after the acreage. Its going to be so nice to have the place to ourselves and do whatever we feel like for 4 whole days! I plan on resting up as much as possible.
Will blog again soon.
Tuesday 17 June 2014
My simple solution for those who don't have time to exercise:
Step 1) Keep track of all the time you spend looking at a screen in one day. This includes your phone, television, tablet, or computer. Obviously if you work at a computer that time doesn't apply. But this does include whipping out your phone just to look at it or text. Record your daily total.
Step 2) Repeat this every day for one week. Record all of it!
Step 3) Add up your weekly total.
Step 4) Look at it and decide if you really have time or not.
Step 2) Repeat this every day for one week. Record all of it!
Step 3) Add up your weekly total.
Step 4) Look at it and decide if you really have time or not.
Sunday 15 June 2014
Two of my favorites.
“You are the average of the five people you spend the most time with.”
-Jim Rohn
"Great minds discuss ideas; average minds discuss events; small minds discuss people."
-Elanor Roosevelt
Think about those for a bit. These are quotes that I really buy into and live by. The first one couldn't be more true, the next one really makes you think about the things you say, and they both make you think about the people you spend your time with.
What is it that you aspire to be? Do the people in your life have the traits and habits you want to have?
Do you, or the people you choose to be around spend your time gossiping? Is Facebook your go-to every time you have a spare 10 minutes to look at your phone? We're all guilty of it in some capacity, but these are definitely traits of small minds.
Does the quality of the conversation peak at the discussion of recent weather events, or what happened on last nights TV show. "Sure has been rainy." Wow, how enlightening. I realize it's something everyone brings up once or twice if its significant enough, but again, is it the peak of your discussion?
Or you do and the people in your life talk about ideas, challenges, opportunities, new concepts, challenging the status quo? Problems, solutions, debates, etc.
Anyways that's my .02 for the morning.
Anyways that's my .02 for the morning.
Wednesday 11 June 2014
Getting more active
I'm loving summer so far. I keep looking back to a year ago, at this point I was a mess again. I was so depressed and socially anxious I wouldn't leave my apartment for days, it was horrible. I'm still really sick but I have a life now, healthy relationships, hobbies, and a good job. Depression wasn't being sad, it was being frozen, stuck, grey. I'm so thankful just to have interests again! Anyone who has been through it knows exactly what I'm talking about. Anyways this isn't going to be a big "then and now" post, that was just something I had been thinking about.
Energy and appetite are perking up, I'm taking it easy with the exercise still. Its embarassing but I literally haven't had a regular exercise routine since November. Since Christmas my body gradually broke down and I was able to move less and less. May was almost no activity at all, so as you can see I'm really not fit. This doesn't bother me, it just means I can't "givr" the way I normally would, at least for a few weeks. I respond to training extremely fast, so my muscles often outgrow my fascia/connective tissue and I become injury prone right away. Like so many things in life I've been stubborn and learned this one the hard way so I know what I'm getting into.
We are finally building the sauna at work. Friday I felt pretty good so I volunteered to help install some of the boards. It was definitely exhausting, I only worked 4 hours in total with break, but it felt great to work with my hands again! Basically every part of me other than my spine misses flooring now. Installing the wall paneling was very similar, but the nice part was I got to stand upright the whole time. It was also a nice to change back to a kind of work where I didn't need to plan on deliver a lesson, or be "engaged" with the public. I guess that's part of what I miss about flooring. Getting started is always a real headache and can be slow, but once your rows are started you get to just crank up your favorite music and nail shit to the floor. I don't have to worry about looking the other way and some beginner popping their shoulder out.
I worked about 4 hours Friday, and then Saturday my back was SORE! Definitely took the day off. Since then I've done 1-2 more easy dumbell workouts with my good arm, feeling a little more "into it" each time. I'm thrilled to be moving off the couch again, but not quite excited to "work out" yet. I'll get there.
Let's see what else.....have been slacking on my homework for my online ed psych a bit, although I wrote another midterm on Monday and feel like I did well on it. I'm sleeping better but mornings are still terrible, I wake up around 630 and am bloated and nauseated until off and on until around 10. It's like waking up with a bad hangover every single day. Not painful so much as intense discomfort and brain fog. It makes it really hard to get my day started. This is part of why I need to limit myself at nighttime when I feel awesome, I can only take on as much as I'm actually going to be able to recover from the next day.
Anyways time for breakfast (aka a cup of tea for now).
Cheers!
Energy and appetite are perking up, I'm taking it easy with the exercise still. Its embarassing but I literally haven't had a regular exercise routine since November. Since Christmas my body gradually broke down and I was able to move less and less. May was almost no activity at all, so as you can see I'm really not fit. This doesn't bother me, it just means I can't "givr" the way I normally would, at least for a few weeks. I respond to training extremely fast, so my muscles often outgrow my fascia/connective tissue and I become injury prone right away. Like so many things in life I've been stubborn and learned this one the hard way so I know what I'm getting into.
We are finally building the sauna at work. Friday I felt pretty good so I volunteered to help install some of the boards. It was definitely exhausting, I only worked 4 hours in total with break, but it felt great to work with my hands again! Basically every part of me other than my spine misses flooring now. Installing the wall paneling was very similar, but the nice part was I got to stand upright the whole time. It was also a nice to change back to a kind of work where I didn't need to plan on deliver a lesson, or be "engaged" with the public. I guess that's part of what I miss about flooring. Getting started is always a real headache and can be slow, but once your rows are started you get to just crank up your favorite music and nail shit to the floor. I don't have to worry about looking the other way and some beginner popping their shoulder out.
I worked about 4 hours Friday, and then Saturday my back was SORE! Definitely took the day off. Since then I've done 1-2 more easy dumbell workouts with my good arm, feeling a little more "into it" each time. I'm thrilled to be moving off the couch again, but not quite excited to "work out" yet. I'll get there.
Let's see what else.....have been slacking on my homework for my online ed psych a bit, although I wrote another midterm on Monday and feel like I did well on it. I'm sleeping better but mornings are still terrible, I wake up around 630 and am bloated and nauseated until off and on until around 10. It's like waking up with a bad hangover every single day. Not painful so much as intense discomfort and brain fog. It makes it really hard to get my day started. This is part of why I need to limit myself at nighttime when I feel awesome, I can only take on as much as I'm actually going to be able to recover from the next day.
Anyways time for breakfast (aka a cup of tea for now).
Cheers!
Tuesday 3 June 2014
Sustainable progress
Feeling well! The sun is shining and I've been sleeping better which is definitely making a difference. Yesteray I managed to get some excercise which was exciting. I took a single dumbell out the the park across the street and did some simple curls and presses with my one good arm. I still can't do anything with my left but I wasn't complaining, I was outside and I was working out again. Other than that I did a few planks but that was it. It's amazing what just some exercise, as opposed to none at all can do for your overall sense of well being.
I am so, so bad for trying to take the world on as soon as I feel well, or as soon as something positive happens. This has been a slow realization over the last 3 months or so, but this afternoon it really hit me as I was sitting in my chair on my laptop this afternoon. I had a document open and was trying to plan my workouts for the upcoming week, before I had even done any stretching or rehab work to recover from the workout I just did.
I've got it completely backwards sometimes. Rather than doing the rehab and the stretches that were responsible for getting me exercising in the first place, and which would obviously be the determining factor of if I would be able to exercise the next day, I was busy looking up what kind lifting program I was going to start doing. I get so far ahead of myself, always chasing the next "cure", rather than just working hard at the ones I've already discovered. Here's a couple more examples,
- I easily spend as much time, if not more, looking at recipes online, than I actually do preparing the food that's already in my house, and I probably "researched" the night before when I should have been in bed.
-I've literally found myself looking up yoga schedules at night and planning when I'm going to go, instead of just getting on the floor and doing some!
I always get stuck in these loops. At least I'm becoming more aware of them, and making efforts to get out when I find myself there. I find nature, just getting out in general, is one of the best things for breaking those cycles.
I chose the title of this blog because that is going to be my intention for the next few days. It was exhilarating to lift weights again yesterday, but if I want to do it again I need to slow down and be disciplined. I am feeling like I'm on "the up" again, but this time I am going to make it sustainable.
I am so, so bad for trying to take the world on as soon as I feel well, or as soon as something positive happens. This has been a slow realization over the last 3 months or so, but this afternoon it really hit me as I was sitting in my chair on my laptop this afternoon. I had a document open and was trying to plan my workouts for the upcoming week, before I had even done any stretching or rehab work to recover from the workout I just did.
I've got it completely backwards sometimes. Rather than doing the rehab and the stretches that were responsible for getting me exercising in the first place, and which would obviously be the determining factor of if I would be able to exercise the next day, I was busy looking up what kind lifting program I was going to start doing. I get so far ahead of myself, always chasing the next "cure", rather than just working hard at the ones I've already discovered. Here's a couple more examples,
- I easily spend as much time, if not more, looking at recipes online, than I actually do preparing the food that's already in my house, and I probably "researched" the night before when I should have been in bed.
-I've literally found myself looking up yoga schedules at night and planning when I'm going to go, instead of just getting on the floor and doing some!
I always get stuck in these loops. At least I'm becoming more aware of them, and making efforts to get out when I find myself there. I find nature, just getting out in general, is one of the best things for breaking those cycles.
I chose the title of this blog because that is going to be my intention for the next few days. It was exhilarating to lift weights again yesterday, but if I want to do it again I need to slow down and be disciplined. I am feeling like I'm on "the up" again, but this time I am going to make it sustainable.
Wednesday 28 May 2014
The Calgary Trip
This is going to be a long one so before I get going here is a quick health update. Back pain is FINALLY improving. I can finally walk without pain. Just getting a little bit of mobility back has had a great effect on my healing process. Now I can at least get outside and go for walks, sit by the river, go to the art gallery, etc. All of that stuff is very therapeutic I've found. I'm not sleeping well, always up at 2:30 to hit the washroom. I usually fall right back asleep, but then my guts wake me up again at 6:30 and this time I'm up for the day because I have to "go" every 20-40 minutes until my stomach stops spasming and cramping. My appetite comes and goes, its definitely been worse before. As you can see I've been losing weight again:
I've been underweight for a while but specifically having my lower body impaired so bad these last few weeks really gave me chicken legs. Most mornings are a real struggle, and I'm definitely not getting my beauty sleep, but beyond that life is good right now. My boss understands my health situation so he let me come back starting with a couple hours per week, just to ease into things. I'm enjoying little things like cooking supper with Lauren, having coffee on the patio, and taking time to stretch and be nice to my body.
Alright, I've been procrastinating this one for a while. Anyways, one of the few treatments I have yet to try for my crohn's is called fecal biotherapy, and yes its super gross. Here is a bit of background on it to save me some typing:
http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/
Basically, you get a poop transplant. The idea is to repopulate the gut with healthy, properly functioning bacteria from a healthy donor. The goal is for the flora to grow and repopulate into a healthy new gut. Beyond that, the immune system is rooted in the gut, as well as most of our hormones are made there. Healthy gut = healthy person. Here is a link explaining
It starting to become recognized as an extremely successful treatment option for C.Difficile, a potentially deadly bacterial infection of the colon. I had it once and it freaking sucks. Some trials are also showing up to 90% success rates for some ulcerative colitis. Colitis is the same thing as crohn's, except it is limited to the large intestine only. Crohn's affects the entire digestive tract from the lips to the anus, as well as the skin and eyes. Again, all of which I have experienced.
So anyways, we are fortunate enough that there is an expert on this treatment nearby (sort of). His name is Dr. Thomas Louie in Calgary which is a 6 hour drive. Its a long way but close considering how few Doctors in the world are actually doing this. Here is a link explaining what he does:
http://www.cbc.ca/news/canada/calgary/poop-pills-can-treat-c-difficile-calgary-doctor-says-1.1895079
My drug-pushing specialist has no interest and has nothing good to say about this therapy, despite the overwhelming success rates. Probably because there are no big pharmacy fecal transplant manufacturers to fly her around to "conferences" in Europe and shit. My family doctor and I thought the numbers were too hard to ignore, so many months ago we got in touch with Dr. Louie's clinic and sent a referral, hoping for the best. Months went by and it seemed like I wouldn't even be considered, until two weeks ago when I received a phone call. He had an opening the next morning so Lauren and I made an impromptu road trip! This was very exciting news. Have I mentioned I have the best girlfriend ever? She dropped her plans for the day, rearranged her work schedule, and drove my ass to Calgary with about 4 hours notice. I made a quick trip to superstore and packed up some healthy food for the road and we were off.
One of the first things I noticed was how quickly my symptoms can change for the better when I'm all of a sudden in a good mood. Just the excitement and knowing we were potentially on my way to the cure was enough to make me forget about being sick for almost the whole trip. Like any road trip with a chronie we obviously had to make a few bathroom stops, but other than that I really felt great. My friend Mark is from Calgary, and arranged for us to crash with his parents once we arrived. We were very well taken care of, and pretty much crashed as soon as we got there.
I had a bad night, and the next morning was one of those ones I described at the beginning of this post. Its more exhausting than anything. Those nights frickin wear me out. By the time I can actually start my day (usually around 10) I am already burnt out. We got up and left, traffic was bad but we were luckily close to the hospital anyways.
The appointment didn't go quite as well as I had hoped either. Don't get me wrong, I thought Dr. Louie was fantastic. He was blunt and honest, and called things as they are. Basically the trouble with my situation is that this has never been done with crohn's disease, and he doesnt think it will work. He told me that I my condition is severe enough that I am facing an inevitable lifetime of surgeries because unlike colitis, crohns keeps showing up in other areas even post-surgery. His co-worker was a 45 year old crohn's patient who had had 23 surgeries so far. He said there are no drugs that work for crohns, just chemical ways of dumbing down symptoms enough to keep you out of the hospital. He told me I am a doctors worst nightmare because they all know there is no cure, but it is rarely fatal so there is no incentive for them to really find one. He said that gastro's just find whatever cocktail is enough to keep you out of the hospital and merely functioning. They let you live this sort of half-life, not "flaring", but not healthy enough.
Some yeah, some pretty heavy news.
That being said, Dr. Louie's opinion was that if I was facing that life of surgeries anyways, there wasn't anything to lose by trying it. He made it very clear that he didn't think it would do much, but when I asked him why the only real reason he could give me was because it hadn't been done and they didn't know. If I was interested, he was willing to pursue it further but it would be a massive commitment. It would basically be his own study because there is no funding or support for this treatment. We would be footing the bill for imported drugs, paying lab techs, etc. He estimated it would cost at least 3 grand, that I do not have, not including travel costs.
His rough plan would be to put me on a cocktail of hardcore antibacterials and antimicrobials for two weeks, the idea being to pretty much kill everything in my entire digestive tract. This would not be a pleasant two weeks! After that, I would start taking the poop pills and hopefully develop a healthy new immune system. The drugs are not approved and would need to be imported. It all sounds pretty crazy but the theory behind it makes sense to me. Although I do have crohn's, the vast majority of the disease is located in my large intestine and rectum anyways. If it works on the large in colitis, then why not in crohns? That is the part I cannot get my head around.
I have always told myself I wanted try this treatment before giving up and having my organs cut out, because I could then at least know I exhausted all my other options. Now I'm not so sure. The only way this would be possible would be to do some serious fundraising for my medical costs, which I am reluctant to do because the Dr. doesn't think it will cure me anyways. My family doctor thinks I should pursue it because she said I'd never forgive myself if I got surgery and always wondered "what if?". Especially if this starts taking off and becoming mainstream for gut issues. The other reason I feel that I should do it is that this guy is 69 years old, and could very well retire whenever the hell he feels like it. He said out of the already extremely limited number of fecal therapy doctors in the world, 4/5 would turn me down immediately simply because I had crohn's. Dr. Louie is willing to give it a shot, so I feel like I should take the opportunity.
I was certainly feeling a lot of different emotions after that meeting, and really felt lost. It wasn't his prognosis that upset me, it was the uncertainty. The day before was full of hope and optimism, and it seemed like we had something definite to look forward to. Now I was just lost. I'm a bit of a control freak so I'm not a huge fan of not knowing.
After I texted everyone the news and took some time to calm down, Lauren and I decided it was best to forget about it and have a fun day, Calgary has an internationally renowned zoo, so that was our plan for the afternoon! Not without grabbing some brunch first of course:
We found a place on urbanspoon and weren't disappointed. This was potatoes fried in duck fat, topped with scrambled eggs, cheese, and mackerel. Typical for my first meal of the day I was only able to eat half of it, but it was freaking delicious. Here are a few shots from the zoo:
Alright, I've been procrastinating this one for a while. Anyways, one of the few treatments I have yet to try for my crohn's is called fecal biotherapy, and yes its super gross. Here is a bit of background on it to save me some typing:
http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/
Basically, you get a poop transplant. The idea is to repopulate the gut with healthy, properly functioning bacteria from a healthy donor. The goal is for the flora to grow and repopulate into a healthy new gut. Beyond that, the immune system is rooted in the gut, as well as most of our hormones are made there. Healthy gut = healthy person. Here is a link explaining
It starting to become recognized as an extremely successful treatment option for C.Difficile, a potentially deadly bacterial infection of the colon. I had it once and it freaking sucks. Some trials are also showing up to 90% success rates for some ulcerative colitis. Colitis is the same thing as crohn's, except it is limited to the large intestine only. Crohn's affects the entire digestive tract from the lips to the anus, as well as the skin and eyes. Again, all of which I have experienced.
So anyways, we are fortunate enough that there is an expert on this treatment nearby (sort of). His name is Dr. Thomas Louie in Calgary which is a 6 hour drive. Its a long way but close considering how few Doctors in the world are actually doing this. Here is a link explaining what he does:
http://www.cbc.ca/news/canada/calgary/poop-pills-can-treat-c-difficile-calgary-doctor-says-1.1895079
My drug-pushing specialist has no interest and has nothing good to say about this therapy, despite the overwhelming success rates. Probably because there are no big pharmacy fecal transplant manufacturers to fly her around to "conferences" in Europe and shit. My family doctor and I thought the numbers were too hard to ignore, so many months ago we got in touch with Dr. Louie's clinic and sent a referral, hoping for the best. Months went by and it seemed like I wouldn't even be considered, until two weeks ago when I received a phone call. He had an opening the next morning so Lauren and I made an impromptu road trip! This was very exciting news. Have I mentioned I have the best girlfriend ever? She dropped her plans for the day, rearranged her work schedule, and drove my ass to Calgary with about 4 hours notice. I made a quick trip to superstore and packed up some healthy food for the road and we were off.
One of the first things I noticed was how quickly my symptoms can change for the better when I'm all of a sudden in a good mood. Just the excitement and knowing we were potentially on my way to the cure was enough to make me forget about being sick for almost the whole trip. Like any road trip with a chronie we obviously had to make a few bathroom stops, but other than that I really felt great. My friend Mark is from Calgary, and arranged for us to crash with his parents once we arrived. We were very well taken care of, and pretty much crashed as soon as we got there.
I had a bad night, and the next morning was one of those ones I described at the beginning of this post. Its more exhausting than anything. Those nights frickin wear me out. By the time I can actually start my day (usually around 10) I am already burnt out. We got up and left, traffic was bad but we were luckily close to the hospital anyways.
The appointment didn't go quite as well as I had hoped either. Don't get me wrong, I thought Dr. Louie was fantastic. He was blunt and honest, and called things as they are. Basically the trouble with my situation is that this has never been done with crohn's disease, and he doesnt think it will work. He told me that I my condition is severe enough that I am facing an inevitable lifetime of surgeries because unlike colitis, crohns keeps showing up in other areas even post-surgery. His co-worker was a 45 year old crohn's patient who had had 23 surgeries so far. He said there are no drugs that work for crohns, just chemical ways of dumbing down symptoms enough to keep you out of the hospital. He told me I am a doctors worst nightmare because they all know there is no cure, but it is rarely fatal so there is no incentive for them to really find one. He said that gastro's just find whatever cocktail is enough to keep you out of the hospital and merely functioning. They let you live this sort of half-life, not "flaring", but not healthy enough.
Some yeah, some pretty heavy news.
That being said, Dr. Louie's opinion was that if I was facing that life of surgeries anyways, there wasn't anything to lose by trying it. He made it very clear that he didn't think it would do much, but when I asked him why the only real reason he could give me was because it hadn't been done and they didn't know. If I was interested, he was willing to pursue it further but it would be a massive commitment. It would basically be his own study because there is no funding or support for this treatment. We would be footing the bill for imported drugs, paying lab techs, etc. He estimated it would cost at least 3 grand, that I do not have, not including travel costs.
His rough plan would be to put me on a cocktail of hardcore antibacterials and antimicrobials for two weeks, the idea being to pretty much kill everything in my entire digestive tract. This would not be a pleasant two weeks! After that, I would start taking the poop pills and hopefully develop a healthy new immune system. The drugs are not approved and would need to be imported. It all sounds pretty crazy but the theory behind it makes sense to me. Although I do have crohn's, the vast majority of the disease is located in my large intestine and rectum anyways. If it works on the large in colitis, then why not in crohns? That is the part I cannot get my head around.
I have always told myself I wanted try this treatment before giving up and having my organs cut out, because I could then at least know I exhausted all my other options. Now I'm not so sure. The only way this would be possible would be to do some serious fundraising for my medical costs, which I am reluctant to do because the Dr. doesn't think it will cure me anyways. My family doctor thinks I should pursue it because she said I'd never forgive myself if I got surgery and always wondered "what if?". Especially if this starts taking off and becoming mainstream for gut issues. The other reason I feel that I should do it is that this guy is 69 years old, and could very well retire whenever the hell he feels like it. He said out of the already extremely limited number of fecal therapy doctors in the world, 4/5 would turn me down immediately simply because I had crohn's. Dr. Louie is willing to give it a shot, so I feel like I should take the opportunity.
I was certainly feeling a lot of different emotions after that meeting, and really felt lost. It wasn't his prognosis that upset me, it was the uncertainty. The day before was full of hope and optimism, and it seemed like we had something definite to look forward to. Now I was just lost. I'm a bit of a control freak so I'm not a huge fan of not knowing.
After I texted everyone the news and took some time to calm down, Lauren and I decided it was best to forget about it and have a fun day, Calgary has an internationally renowned zoo, so that was our plan for the afternoon! Not without grabbing some brunch first of course:
We found a place on urbanspoon and weren't disappointed. This was potatoes fried in duck fat, topped with scrambled eggs, cheese, and mackerel. Typical for my first meal of the day I was only able to eat half of it, but it was freaking delicious. Here are a few shots from the zoo:
Life could be worse right?
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