It's been two months since I last posted, and I wish I had better news to share.
I spent 4 days in the hospital in late August to both improve my lung function and try to diagnose the worsening stomach issues. 4 hours of therapy a day, another colonoscopy, and a PICC line in my arm for two weeks and it looked like I might be doing better. While the pathology was still inconclusive, my condition was at least narrowed down to either Fibrosing Colonopathy or severe Chrohns.
At the end of the day, the images from my last colonoscopy were shocking even to the panel of GI specialists who we're working with me. Everything was mangled, swollen, ulcered, and nearly impassible with the scope but at least we were narrowing it down. There was strong reason to believe that switching to a new digestive enzyme might be all it takes to improve my condition.
The first 4 weeks out of the hospital nearly had me believing this was the case, too. I regained my appetite, put on 6-8 of the pounds I'd lost, and had lots of energy again. Unfortunately, this was all short lived. I began worsening again after about 5 weeks and have since had all my original symptoms in full force...
Fast forward to today: I had a follow up appointment with the GI specialists at University Hospital today, and the decision was made that my condition is not going to improve without first surgically resectioning my bowels. Basically, we need to remove my appendix and half my colon before we can even begin treating the root cause of my pain, fatigue and weight loss. Once this is done, they will have a large enough tissue sample to conclusively diagnose the root cause of all my issues.
Surgery is scheduled for next Monday and I'll be in the hospital for a total of 5 days. After that it will be at least a month before I'm able to attempt any form of exercise. While this is a bleak concept, the thought of getting better and not being in pain so frequently more than outweighs the negative.
On a positive side note, yours truly is featured in a recent documentary that was released which highlights the stories of several CF athletes who are using exercise to overcome the disease. I hope I can return to that form again someday soon. You can watch the whole documentary here: http://www.livingxtreme.org
Better news to come!