Back in hospital...

Hopefully just for the night, it's been a frickin long day.

Recovery has been painfully slow.  Considering the operation was a month ago I'm really not doing well.  This infection really threw a wrench into everything and has slowed down the entire process.  It's more so extreme discomfort than pain that is getting to me.  There's a difference, but its just as bad as pain.  I do still have extreme pain once or twice a day, but beyond that its just constant abdominal pressure.  It's pushing against my ribs, my back, my bladder, you name it.  It hurts to move or breath deeply or even sit up with a neutral spine.  It's also very uncomfortable having drain tubes stuck inside of me and bags hanging everywhere.  It's weird how I was actually doing better the day of the operation than I am now.  

Last Wednesday I came in for a CT scan, which showed that the abscess currently being drained had almost dissipated, but another large collection had formed, this time on my right side.  The good news; we finally know why I'm hurting so bad, the bad news; I've got another fucking abscess.  My family doctor called me the next day with the report.  There was the large abscess that needed to be drained, as well as multiple smaller ones that will have to dissipate on their own.  The scan also showed what looked like a clot in my femoral vein.  I was ordered blood thinners (more needles, yay) immediately and was told to wait to hear more about getting the abscess drained.  Of course being Easter weekend, I couldn't get in until today.  It was a tough weekend of just waiting in pain.

Lauren brought me in at 10am this morning, and once I saw the surgeon he said he would order the test to be done and get me a bed because I would likely be admitted.  I was expecting just a quick in and out, putting in the drain only takes a half hour or so, but I guess they want to keep me for observation.  I didn't take it well, I hate being in here so I was pretty grumpy all day.  We had to wait in a waiting room until around 4 and of course no food or water allowed until after the procedure.  As I type this it sounds petty to complain about, I've certainly endured worse, its just a straw that breaks the camel's back type of ordeal.  I almost snapped this morning.  More waiting, more needles, more poking and prodding, more stupid protocols......less freedom.  I was also frustrated that they knew about this abscess a week ago and gave me no information on what was to do down, they certainly didn't let me know I should expect to be admitted.  Nobody likes going to RUH for a simple follow up and being told you have to stay. 

Anyways they put in a 2nd tube, this one hurts a lot more.  As of right now I've got an ileostomy, a wide open surgical cut (under gauze, they had to take all the staples out when the abscess started leaking through), and a drainage line in either side of my abdomen.  So yeah, the old midsection isn't feeling so hot right now. 

That was a little ranty, but hey it's been a rough go and I figured it was a good time to update everyone.  Time for the positives:

-My family and friends are amazing.  Lauren has been nothing but supportive, and her resilience through all this has been inspiring. Everyone around me has gone above and beyond to do anything they can to make me comfortable, whether its running around the city to pick up random stuff for me, putting movies in the dvd player, or just giving me a back rub, everyone has been so good.  I truly am fortunate to have so much support, some people go through this stuff alone and I can't even imagine what hell that would be.

-Home care has been helpful without being annoying or intrusive.

-The surgical incision over my belly button is healing very well.

-As annoying as this drain tube is, at least its just an abscess rather than a kink, blockage, or perforation, etc that would necessitate more surgery.

-My stoma/ostomy is working great.

-No more catheter or staples.

- I can go for car rides, etc without being scared of having to go to the bathroom all the time!!!

-Again, I have such a huge base of support.  I don't feel like anything has been too big or too small to ask for.  One big highlight has been friends taking me out for walks, or in this case wheelchair rides :)

No walk in the park (slightly graphic details)

I apologize in advance for the lack of structure for this post, I hardly have the energy to blog so it might be a bit of a ramble.

The operation itself did go great, but 2 weeks afterward I'm still battling complications.  The day after the surgery my vitals went crazy and showed definite signs of infection.  The next day they got me on aggressive antibiotics.  The abdominal pain continued to get worse and worse when it should have been getting better.  That night I rolled on to my side and a bunch of liquid oozed out and stained my gown.  Thinking it was just my ostomy leaking I buzzed the nurse, after cleaning the stoma area we realized the leak was coming out of my largest incision, the one right over my belly button.  Soon they removed a few staples and puss started oozing everywhere.  Definite infection.  It was so bad the had to leave the wound open and add an extra bag for the fluid to drain into.  This all happened around 1am and made for a long night, the nurses did an amazing job though.

The next morning I made it in for a CT scan which showed a very large abscess that had formed and needed to be drained.  That afternoon I was sent down to have a tube inserted into my belly to drain pus into, a THIRD bag hanging off of me.  So now I've got 1 ileostomy pouch, 1 incision drain pouch, and 1 abscess draining pouch.  Thank god my catheter was out by that point.  Add wheeling around an IV into the mix and I was not all that inclined to move around.

The rest of my stay has been kind of a blur, the initial drains and having the antiobiotics kick in helped significantly, but I was still in pretty serious pain.  I've been home a week now, and the drains are still flowing, I'll need them another week for sure.  They are just so cumbersome and annoying.  Monday night I threw up, and a bunch of blood and thick stuff shot into the incision bag from all the heaving pressure, we called home care and got sent to emergency to make sure it was all ok.  Everything turned out to be fine, it just made for a long stressful night.  The next morning home care changed all the dressings and stuff.

Even since being home, I've been in constant pain until yesterday really.  The good news is I haven't needed a painkiller in about 24 hours, I want to avoid those wretched things as much as possible.  I've hit an all time low of 124.5 pounds, so now a legitimate 50 pounds under my normal bodyweight.  Moving and eating are huge struggles, but I know I need to keep up with that stuff in order to heal.  I have a CT scan on Wednesday to see how the abscess is doing, and can hopefully ditch this drainage hose shortly after. 

Mom has been amazing looking after my every need here at the condo.  I've had lots of support from friends and family, just no energy for visitors yet.  I've been sleeping almost constantly which is good.  It's just been a long slow recovery and I'm growing weary.  Not a lot really cheers me up, and nothing interests me right now.  I'm thinking maybe one more week of it being this rough and once this infection is behind me I should see another boost in strength.  Anyways that's about all I have to say for now.  Home care should be here right away and then its nap time.  Cheers.

January Catch-up

Continuing on with the "sure haven't blogged in a while" theme, I figured I should at least post an update of where things are at.  I'm constantly "blogging" in my head in a sense. I get all these thoughts/rantings/ponderings, health information, and fitness information that I feel compelled to share, but then I become indecisive and feel intimidated to write any of it because I'm such a perfectionist I fear that I might come off the wrong way or not word things perfectly, so then I over think it and end up not writing anything.  I know it's irrational, I suppose I need to remind myself why I started this blog in the first place; because it was therapeutic for me.  So anyways I'm going to dive right in with no plan.....

Still no surgery date!!!  Argh.  Having closure and accepting the surgery was great, but the waiting and not knowing is getting to me now.  The latest we know is that I am on the urgent list, however the surgeon is booked up for the next 2 weeks, and then going on 2 weeks of holidays.  So in 4 weeks, he will just be starting to chip away at his list again, on which I have no idea where I'm situated.  So much for shortly after Christmas. 

I'm too worn down to be upset about it.  I'm so mentally drained I can't even experience anger or sadness it seems.  I want to move on with my life! I've been in limbo for so long; not sick enough to be hospitalized but too sick for basic functions like work and school.  The isolation is definitely affecting me.  Getting out of the house is a big enough deal, but reconnecting and seeing people is a real struggle.  Social anxiety sucks.  Getting out and seeing friends and family is so intimidating, even though that I realize they know and understand my situation.  Then the longer I go without seeing someone, the harder it is to recconect.  Going back to the track is brutal.  I know there are plenty of people there happy to see me out, but I get so damn skittish and just want to go back home.  Same with large family gatherings.  I suppose the trouble is that I feel I can't relate to anyone right now.

I loathe being bombarded with "how have you been feeling??", but at the same time hate it even more when people have no idea what I'm going through.  I can either lie and just say "good" and then feel resentful, or be honest and tell an acquaintance that I haven't seen in 6 months how much blood was in my toilet that morning.  Okay, I realize I don't need to be that graphic but you get the idea.  Either way I suppose it's just a wall that I'll need to break through eventually, the longer I put off getting out the harder it will be.  The last thing I want is for the surgery to take the pain away and then still be scared to leave the condo. 

I'm currently taking one online class, have 2 very casual clients at the gym (that understand my health situation), and have my nutrition coaching cert to chip away at right now.  Although those are literally my only obligations right now, it feels extremely overwhelming.  With the near future lacking so much certainty I'm finding it harder than ever to focus.  I'm strongly considering just dropping the university class. Like everything I just registered for it assuming I would be in better health by the time it rolled around.  I think I'd rather just knock out my remaining 4 classes in one term whenever I'm healthy, regardless of when that may be rather than making myself sick with stress one class at a time. 

As far as the operation itself goes, hell, I'm ready.  I'm looking at it as a challenge.  I've started listening to an mp3 of positive affirmations designed for those awaiting surgery, as well as meditating daily for the anxiety (I'm actually consistent at this now!!!). I've even made a pre and post surgery nutrition plan to maximize my body's chances of recovering well.  Doc says I'll be in the hospital for a week?  Challenge accepted, lets make it 5 days.

I want to make this surgery my bitch! 

Lane

Moving forward.

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.  

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.

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. 

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.