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.

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. 

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.