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Any others riding with an ostomy? advice wanted!!

Old 10-16-15, 08:26 AM
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nevertrustafart
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Any others riding with an ostomy? advice wanted!!

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.
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Old 10-16-15, 08:43 AM
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Dan333SP
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Ouch. I like the humor of your username, though. I have nothing useful to add, but I hope you find a solution that allows you to keep riding. If I had any kind of medical condition that kept me off the bike potentially forever, it would be very, very hard to accept. Good luck!
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Old 10-16-15, 09:12 AM
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WOW, yeah man, I don't have much to add or advise, but major props to you bro...You've been through a lot and you still keep going, trying to ride... I salute you for that...
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Old 10-16-15, 09:39 AM
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Dan333SP
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I'd imagine there may well be better responses to be had on a forum specific to Crohn's disease, if such a thing exists? I'm sure there must be a fair number of others out there with similar circumstances who are either runners or cyclists and have found ways to remain active despite the condition.
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Old 10-16-15, 09:43 AM
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Thanks guys, im definite going to stay with it. Just may have to limit the ride time.
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Old 10-16-15, 11:33 AM
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Consider a trainer to practice on in the comfort of your home. That will give you a better idea of what to expect out on the road.

Consider a reclining type recumbent bike or trike. It's a little harder than riding an upright bike, but your young enough that you will pick it up pretty quickly.
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Old 10-16-15, 11:20 PM
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Moved from Road to Adaptive.
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Old 10-17-15, 04:36 AM
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Thank you for moving it, I haven't ever left the road forum, this is definitely where is belongs though! In the words of borat, it eesa veerry nice nice! Ehh thank you veerry much! I have a trainer that the whole bike mounts on to that i use indoors, I hate the thing, I would prefer 31 degrees snow and wind and not be on the trainer. I dropped my saddle a cm or so and flipped my stem so its angled up a bit more then took a short ride, it felt big on the trainer before but now on the road it feels 98% perfect. Sometimes it amazes me what two small adjustments can do. I was going by my old saddle rail to center of bb measurement and neglected to account for going with a longer proper for me crank arm length, as well as it being different bb type and placement. With slight refinement I believe i'll eventually find the sweet spot, and yesterday i was surprised to find that the hunching was more than acceptable. If anyone has any thoughts they feel like sharing i would love to hear them, and if they are not something you want shared or if anyone has too graphic for the boards cycling/ostomy stories feel free to pm me!
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Old 09-05-18, 11:45 AM
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Originally Posted by nevertrustafart View Post
Thank you for moving it, I haven't ever left the road forum, this is definitely where is belongs though! In the words of borat, it eesa veerry nice nice! Ehh thank you veerry much! I have a trainer that the whole bike mounts on to that i use indoors, I hate the thing, I would prefer 31 degrees snow and wind and not be on the trainer. I dropped my saddle a cm or so and flipped my stem so its angled up a bit more then took a short ride, it felt big on the trainer before but now on the road it feels 98% perfect. Sometimes it amazes me what two small adjustments can do. I was going by my old saddle rail to center of bb measurement and neglected to account for going with a longer proper for me crank arm length, as well as it being different bb type and placement. With slight refinement I believe i'll eventually find the sweet spot, and yesterday i was surprised to find that the hunching was more than acceptable. If anyone has any thoughts they feel like sharing i would love to hear them, and if they are not something you want shared or if anyone has too graphic for the boards cycling/ostomy stories feel free to pm me!
New to bikeforums, and stumbled across your post. Fellow ileostomate (U.Colitis, sepsis, five surgeries later, I'm riding a bike at 52). I find the endurance geo is pouch friendly. Fellow Coloplast Sensura Mio (light covex). On riding days, I rotate the pouch so as to not pinch it off. Prefer 30+ mile rides, completed several Metric and two Centuries this season alone. No appliance issues at all!
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Old 09-05-18, 12:49 PM
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you can also change/empty the pouch, yes? my wife has UC, and has had the colostomy surgeries, so I know something about this.
i'd suggest also exploring the options from the difference ostomy supply companies, talking to their support staff, to try and figure out the best options to try.
if you have to go more adaptive (change geo or bike style), try to wait to make those wholesale changes until you have exhausted the other solutions.
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