Being a road cyclist and not a noob I figured this would be the best place to post this and please correct me if i am wrong so i can put it somewhere else. And I apologize in advance this is gunna be a tad bit long winded. First thing I should say, is that I have loved cycling since childhood and refuse to give up on it. Background info, I am presently 22, but began riding at 13 on my dad's late 70's lugged steel woodrup racing frame still equipped with downtube shifters and a slightly out of true front fork (did it w/ his arm in a race accident), from there I graduated to an aluminum frame Giant tcr which I rode for several years until i put a crack in the head tube welds and sold her for parts. At this point its early 2010 and I started feeling the first frequently present symptoms of Crohn's disease. By November 2011 I had Crohn's full force and unrelenting, all while having no idea what was going on nor ever even having heard of Crohn's. The next three years were simply put a nightmare. I can't say for sure if there is an actual physical place we would call hell, but I know for certain that life is and can be hell. Back tracking for a second, in September 2013 I bought a nos giant tcr advanced 2, she had the white/black/grey paint scheme with black 105 5700 and white DT swiss wheels. To quote Steve Iriwin, "would ya look at her, boy this sheila is a beaute!". I loved the way she looked, unfortunately she was a size too small and I had a group of 3 herniated discs from a dually truck tow mirror to the small of the back while riding (on top of Crohn's) which made it hard to ride. October 2014 i had surgery
#1 , a partial colectomy resulting in a colostomy but with a fair chance of re-osmosis(putting your pipes back together) and found the colostomy was no hindrance once i was in remission and that I could ride. Then in February 2015 everything started going bad, again. At first just my back which got bad enough to where in May I had disc surgery to fix the worst one, then sold the giant, and In June Crohn's reared its ugly head and wrecked everything. To make an very long tale shorter I was back in the hospital in August and after 2 weeks the the rest of my colon exploded, then emergency surgery, followed by every complication possible, and was discharged mid september, 5 weeks after admission. I am now left with an ileostomy. A quick side bar, just finished building up another bike, nothing fancy, its an alu motobecane frame with 105 5800 and shimano wheels. I went with this frame mainly due to the next to nothing price tag on ebay and it being in between race and endurance geo.
Now to the Questions. When i had the colostomy bm's had a definite schedule and i planned around them as well as I had all of my right ascending, transverse, and partial left descending. For those who have no idea why that's important its due to the solidity of your poo, the more colon you have the more formed and solid your poo is. Also i never had seal issues with the colostomy and never worried as long as I used the right pouches. So I guess that my questions are, how does one deal with constant output during long 3+ hour rides? And how do you manage keeping a good seal while hunched over(my stoma, named Frodo, is right on my bend line), sweating, and lots of movement? I'll add that since the ileo I have switched to coloplast Sensura Mio, which I have found through trial and much error to be my best option so far(very soft & flexible adhesive backplate, almost like a thin silicone rubber). Lastly should I consider a more endurance aimed bike so that I am more upright and less bent?
sorry for the jumping around and length, any advice is more than welcome! Zach.