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:

 

Life could be worse right?