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?

TIme to get posting again

Ok I know this is a recurring theme...starting blogs off with "oh wow I've been slacking....".  Oh well, like I said the reason I started this blog was for myself, because it was therapeutic to share.  Not because it was an obligation.  Anyways I have about a million health updates, and some exciting information that motivated be to get back at this.

So where do I start?  This morning I'm feeling pretty awesome.  I have such an awesome team around me and I feel so supported. I feel like a lot of people really have my back right now (you know who you are), and that is a good feeling to have in my situation.  It hasn't always been that way, for the longest time I thought I was on my own to fight this disease but I've learned to just face my fear of reaching out to people.  I've learned that its brave to be vulnerable, and people really do want to help when they know someone is in need.  I used to just put on the brave face and face it alone.

Health wise I'm still hanging in there.  My spine may have loosened up but I'm definitely not out of the woods yet.  Whenever my guts flare the back pain gets so much worse.  I've still got a lot of physio and rehab ahead of me to get my body back, but I look forward to the opportunity to get better. My gut symptoms are probably at about a 2:1 good:bad ratio right now, 1 bad day for every 2 good days.  Funny thing is I'm better at the bad days then the good ones.  On a bad day I know exactly how to medicate and treat myself, on the good days I try to take on the entire world and bite off more than I can chew. Then I end up forgetting to eat or medicate and I burn myself out again.  There is definitely a balance to be found.  I do still think its important to "make hay when the sun shines" so to speak, but my progress needs to be sustainable.  I need to start being more realistic on my good days, and not forget of what it is that got me feeling well in the first place.

So there's the how I've been feeling update.  As far as what I've been up to the last couple of weeks, I had to extend my leave of absence from work because I still wasn't strong enough to go back until just this past week.  My boss has a friend with crohns and he knows how brutal it is, so he is very understanding.  He is letting me come back to work just 2 hours per week which I am so thankful for.  Obviously that is basically a non-existent income, but thats not what I do it for.  I like teaching fitness classes because of the satisfaction I get from sharing my passion with others.  Crohns may have taken away my ability to train myself right now, but it will never stop me from being involved in something I love.

 I'm taking an online Ed Psych class right now.  Its pretty easy, but very fast-paced which I am not used to.  The midterm definitely definitely caught me by surprise, not being used to a course condensed into such a short time frame.  I think it's good for me to keep a focus on something consistent right now though.

I've got a bunch of other stuff to update you guys on, but the sun is shining and I need to get outside!  Speaking of which, here is a shot of Lauren and I at Jade lake last weekend :) 

Stuck in treatments all day

Decompression treatment.  One belt around the hips, one around the rip cage, and they pull apart!  Sounds fun right?  It's actually not so bad.  I've got these 2x a day for the whole week, it's definitely helping so far.  My back isn't quite as stiff, and my leg's don't ache anymore.  I'm hoping to be able to do some very light exercise by the end of the week. So that was my afternoon, this was my morning:

Iron infusion.  My intestines are so far gone I'm not absorbing iron anymore, even with supplementation, juicing, etc.  It's more effective to get it through IV for me, so I've been going once a week.  Today was my 3rd of 4 infusions.  If my levels get back up to normal it should definitely help my energy.  The treatments are lengthy, sometimes up to 4 hours.  I usually nap, but today I had my friend Britt come for a visit and bring me lunch haha.  The hospital sandwiches aren't exactly top notch, even if I ate gluten.  My nurse was also my friend's mom so I had a good morning catching up with nice people. 

So even though I've been hooked up to machines all day, I've had a pretty good day.  My energy is coming back, as well as my appetite, and I'm not in quite as much pain.  Anyways that's all I feel like blogging for now!

Back in the city already

Not feeling spectacular this morning.  My guts are upset and its one of those days that I need to stay near a washroom for the first few hours after waking up.  Slept decent last night.

On a positive note my body pain is a little better.  I haven't blogged in a few days so I guess I'll get you caught up.  Since I've last posted my bulged disc has been causing serious pain.  I don't know all the proper anatomical terms, but in "normal people words" what is happening is two of my vertebrae are jamming together and pinching nerves which can cause referral pain in other parts of the body.  I have a L5/S1 protrusion and something going on in L4 too I believe.  Anyways for example I've always had issues in my right big toe.  Sometimes it flares up for no reason like turf toe and becomes weak and stiff. Turns out it was connected to my back the whole time.  Over the last few weeks everything from my waist down gradually tightened up, hamstrings, then calves, it was kind of weird because I have not been training or anything.  Then the outsides of my knees (fibular head more specifically) started hurting.  It made sense because of the tension in my calves, hamstrings, and glutes.  IT bands were steel cables as you could imagine.  I thought most of this was arthritis from my crohn's, which I also have, but now I'm thinking its mostly coming from the spine. (Why I have the disk bulge in the first place I have no idea).

 I spent the last few days at home, hoping to get outside a little bit but honestly ended up spending about 90% of my time on the couch.  I guess my sciatic nerve is being pinched, that's the big one that goes all the way down your leg.  Friday was so bad I lost function of my left hamstring.  It was no longer just painful in certain ranges of motion, but just constantly shooting into my legs.  I couldn't bend or straighten my left leg and the tops of my feet were totally numb.  I finally pulled the trigger and called my physio clinic to start some decompression treatments.  It's pretty hardcore, 2x a day for the whole week.  Kind of a bummer because I was wanting to hang out at home or another week, but I can't do anything with a screwed-up back anyways.  Lauren is still at training camp for a couple more days, and I have this week off from work.  I'm so bored!  I have lots of health/personal stuff to work on I guess, practicing deep breathing and doing physio exercises just isn't all that thrilling. 

I'm sure looking forward to getting my mobility back.  Being home out in the country got me excited for summer.  I'm looking forward to spending time with the family, fishing by the river, hanging out with Penny (our dog) and all of that stuff.  Here is a couple pics from home:

My boat just begging to be taken out! As soon as my back is better I'll clean her up.

And Penny: