# Riding with a ostomy bag



## mtnbiker72 (Jan 22, 2007)

Due to a recent severe illness I had my colon removed and am currently living with an ileostomy. Down the road I may have more surgery to correct this but for the immediate future (6 month minimum) I am living with a bagging system. It actually doesn't bother me except the location is a little above my waistline so I am concerned about shorts/pants with a waist band across the bag and all the motion on the bike. 

My thought is bib shorts and tights/knickers, I have a pair of bibs for road riding so I know how they fit. Seems the lack of a waist band would be perfect. Not keen on the lycra riding off-road (remember, no waist band wanted so no overshorts) but at the same time riding is the most important thing.

Does anyone else on MTBR ride with an ostomy? Any tips would be great, thanks for your help.


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## blackstripes (Aug 18, 2008)

No, I don't ride with one, but I do ride in bibs all the time. I don't particularly have any problem wearing my road gear out on the mountain bike. If that is comfortable for you, I say just do it.


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## wilonpill (Aug 19, 2009)

You can wear the bib under a set of baggies. I have friend who prefers this.


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## mtnbiker72 (Jan 22, 2007)

wilonpill said:


> You can wear the bib under a set of baggies. I have friend who prefers this.


Thanks, but this doesn't address the waistband across the bag issue as mentioned in my initial post.


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## Magnum626 (Sep 21, 2009)

Maybe a velcro binder kind of thing. Big enough so that the waistband doesn't rub up and down against the bag.


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## EclipseRoadie (Oct 7, 2007)

Stealth Belt Official Site


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## JAGI410 (Apr 19, 2008)

Wear bibs, or whatever you want. No one will give you any grief about it, because you're a bada$$ for going out to ride after illness. Hats off to you sir.


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## mtnbiker72 (Jan 22, 2007)

EclipseRoadie said:


> Stealth Belt Official Site


1/3 the price (or less) and very nicely made. I just picked up two and they will work for all kind of uses including cycling.

ostomysecrets - stylish ostomy underwear and ostomy undergarments for men and women


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## EclipseRoadie (Oct 7, 2007)

mtnbiker72 said:


> 1/3 the price (or less) and very nicely made. I just picked up two and they will work for all kind of uses including cycling.
> 
> ostomysecrets - stylish ostomy underwear and ostomy undergarments for men and women


Nice, let us know how it works out!


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## briankrider (Apr 2, 2009)

This won't address your question for the short run, but it might in the long run.

Have you considered getting your ileostomy reverted into a continent pouch, like the BCIR?

BCIR - Barnett Continent Reservoir - for Brooke Ileostomies, ulcerativecolitis, FAP, failed Kock Pouches and J-Pouches

No raised stoma, no external appliances, no leaks, no discomfort at all. And you''re in control, not the bag.

Private Message me and I'll give you my experience of the procedure, now post-op 2 years. The BCIR gave me my life back and bike racing, too. I'm not selling anything or don't profit by referrals, I just know how important mountain biking, hiking, etc., was to me to get me through the ravages of UC, and I hope it might help someone else keep riding without discomfort, embarrassment, etc.

Brian K.


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## mmountainbiker (Aug 7, 2009)

use your camel...err poopback


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## mtnbiker72 (Jan 22, 2007)

mmountainbiker said:


> use your camel...err poopback


Your a class act...


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## mtnbiker72 (Jan 22, 2007)

Here is an update at 4 months since surgery.

I have been doing spin classes for the past two months using my Ostomysecrets wrap under my bibs which has worked just fine. I finally have made it back out on the trails. I was concerned about crashing so I picked up a product called Ostomy Armor.

Here I am back on the trail, I can ride just as well as I did before...probably better than the last few years since I am no longer sick!


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## F.N.G (Jan 6, 2008)

Good for you. Glad to hear you feel good. keep the good fight!


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## photodog (Jun 2, 2008)

Wow, that first ride must have been pure magic! Congrats on getting back out there! Weird thing about stuff like this is it makes you appreciate life a bit more. Health just can't be taken for granted, gotta appreciate every minute of it!


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## HrznRider (Aug 21, 2011)

mtnbiker72 said:


> Due to a recent severe illness I had my colon removed and am currently living with an ileostomy. Down the road I may have more surgery to correct this but for the immediate future (6 month minimum) I am living with a bagging system. It actually doesn't bother me except the location is a little above my waistline so I am concerned about shorts/pants with a waist band across the bag and all the motion on the bike.
> 
> My thought is bib shorts and tights/knickers, I have a pair of bibs for road riding so I know how they fit. Seems the lack of a waist band would be perfect. Not keen on the lycra riding off-road (remember, no waist band wanted so no overshorts) but at the same time riding is the most important thing.
> 
> Does anyone else on MTBR ride with an ostomy? Any tips would be great, thanks for your help.


Much respect for you sir for finding a way to continue with your passion for riding.


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## sponger (May 14, 2006)

I have to agree with another post that this is truly an inspirational if not downright hard core display of mountain biking gravitas. Might I ask what illness other than tumors leads to the colon needing removal?


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## briankrider (Apr 2, 2009)

Ulcerative Colitis for one. Sometimes Crohn's Disease primarily affects the colon. There are probably many more but those two are bad enough.

Brian K.
Member, Pisgah Area SORBA
'08 GF HiFI Pro


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## mtnbiker72 (Jan 22, 2007)

sponger said:


> I have to agree with another post that this is truly an inspirational if not downright hard core display of mountain biking gravitas. Might I ask what illness other than tumors leads to the colon needing removal?


Ulcerative Colitis...I battled it for five years before losing my colon.


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## sandyeggo (Mar 6, 2011)

mtnbiker72 said:


> Ulcerative Colitis...I battled it for five years before losing my colon.


I find this quite inspiring, dude! Many (most?) folks would give up on their passion. Props to you!


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## 475856 (Feb 6, 2010)

Having lost my dad to colon cancer my hat off to you!! 
FWIW, I ride in spandex too and could care less what other riders say or think. I find it more comfortable than the baggy MTB shorts, Remember it is YOUR ride and life!!


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## sooner518 (Aug 1, 2007)

Pretty cool you guys are still able to roll with the ostomy bag. Had a good friend battle collitis for 2 years before finally getting his colon removed. He had a bag for 6 months but the docs were able to "reconnect the plumbing" so to speak. Its a terrible disease that almost took his life at one point (he was very close to dying of septic shock at one point right after surgery). Thankfully he was able to make a pretty full recovery. 

anyways, awesome to see that the bag aint holdin ya back.


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## mtaviator (Dec 11, 2011)

I've had Crohn's Ileitis for 13 years. No surgery yet but I would be silly to think I will get by with out at least a resection at some point. Just wanted to say it's good to hear someone post surgery doing well. Ride on my friend.


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## DFYFZX (Jun 19, 2009)

mtnbiker72 said:


> Ulcerative Colitis...I battled it for five years before losing my colon.


I'm another victim of UC. Lost my colon at 26! 30 years old now and riding every bit as much as I used too in my teens:thumbsup:

I never had any external appliances since I went straight to the BCIR that someone linked above so I can't help you out with your question. If you have the option, I'd highly recommend the BCIR:thumbsup:


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## primestick (Jan 8, 2009)

Props man, I had 3 feet of intestine taken about a year ago due to Crohn’s. I gained 75+ pounds from steroids and am just now trying to get back on my bike. Thanks for posting this gives me hope.


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## coke (Jun 7, 2008)

UC almost killed me last year at age 25. Had a bag for 6 months and hated it, but I was able to ride. I wore a nu hope belt to hold it tight against me and phoenix belt over that to hold the bag. I was able to do jumps and ride technical XC without much trouble. I was also able to do motocross style riding on my quad with this setup. It worked very well for me.


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## mtnbiker72 (Jan 22, 2007)

coke said:


> UC almost killed me last year at age 25. Had a bag for 6 months and hated it, but I was able to ride. I wore a nu hope belt to hold it tight against me and phoenix belt over that to hold the bag. I was able to do jumps and ride technical XC without much trouble. I was also able to do motocross style riding on my quad with this setup. It worked very well for me.


Are you J-Pouching it now days?

I potentially have that option but it would require two more surgeries that right now I don't want to deal with. The bag doesn't actually bother me that much but I know it's all a personal choice.


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## coke (Jun 7, 2008)

mtnbiker72 said:


> Are you J-Pouching it now days?
> 
> I potentially have that option but it would require two more surgeries that right now I don't want to deal with. The bag doesn't actually bother me that much but I know it's all a personal choice.


Yes. Having some pouchitis, but for me I much prefer this over the bag. Almost feel normal again.


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## KVW (Aug 11, 2011)

Just curious, for those on here affected by Ulcerative Colitis, did you at first mistaken it for IBS? For the past 6-7 years I've be putting up with what I assume is IBS but this thread got me google searching and now I'm starting to wonder =/


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## mtnbiker72 (Jan 22, 2007)

KVW said:


> Just curious, for those on here affected by Ulcerative Colitis, did you at first mistaken it for IBS? For the past 6-7 years I've be putting up with what I assume is IBS but this thread got me google searching and now I'm starting to wonder =/


My "general" doctor diagnosed me with hemoroids:skep:

It was only after symptoms got really bad six months later that I saw a specialist and had a colonoscopy which diagnosed me with UC.

I would highly recommend seeing a specialist, UC and Chrons is no joke.


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## DFYFZX (Jun 19, 2009)

coke said:


> Yes. Having some pouchitis, but for me I much prefer this over the bag. Almost feel normal again.


I fought pouchitis off and on after my BCIR. I kept getting on a antibiotics once every couple months to take care of it until I finally broke down and started eating one Activia yogurt everyday. Seriously. It sounds silly but the stuff works! Eat one a day if you're having pouchitis issues and once you're fine, one every couple days is good enough. Haven't been on antibiotics for over three years now:thumbsup:


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## mtnbiker72 (Jan 22, 2007)

Update, I have had a re-occurrence of UC in the small part of my Colon that was left behind (referred to as a stump). So my riding the last couple months has been limited to shorter rides, mostly with my 6 year old. I'm going in for surgery on Monday to get the final part out. This will be permanent, no chance of a J-Pouch but also should end any UC issues forever. I'm ok with the bag most of the time so if I can get this done and get healthy (about 6 week recovery) for summer then I will be a happy camper!


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## dcc1234 (Nov 5, 2008)

Mtnbiker72. Good luck- you are an inspiration. You advised me years ago to keep my late 90's rockhopper which I now still ride every day. Thx for that.


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## ghglenn (Jan 26, 2012)

Hang in there. Sucks that you are having to go through another procedure. At least, as you stated, you won't have to revisit this issue after things are done. Keep riding.


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## chuggboy (Jan 10, 2005)

All the best for a speedy recovery. I also have UC diagnosed 1988, thankfully controlled by olsalazine. You are an inspiration, knowing that even after everything, you still have the passion for riding and planning to get back out there. 

Ride on. 

C


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## mtnbiker72 (Jan 22, 2007)

Three weeks into recovery and things are going pretty good, had an infection that put me back in the hospital for a few days last week. But that has been cleared up and I'm recovering well. I can't wait to get back on the bike. Plus my son's birthday is coming up and I got him a 20" mountain bike so he can really start trail riding with me.

In the meantime I got a junker bike project to work on. I got a 1997 Bianchi Ocelot for free, it needs a fork, seatpost, saddle, and tires. I plan on rebuilding it to a full rigid commuter and selling it on Craigslist. Something to keep me busy till I can ride in a few weeks.


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## mtnbiker72 (Jan 22, 2007)

I'm back riding...went on a road ride yesterday and while I am out of shape (on the climbs) and my technique is a bit rusty (on the descents) it feels great. Can't wait to get back on the mountain bike.










That's me in the Sugoi jersey


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## likeaboss (Jan 1, 2012)

Great to see you are back on the bike and feeling healthy.

I battled UC for almost ten years. The prednisone nearly killed me in the latter years. Had my colon removed in 2000 and have been J-pouching it ever since. Tried to keep biking and skiing through all the surgerys. Even went skiing between the removal and take-down. Wore suspenders a lot during those 12 weeks with the bag.

I have not looked into any of the recent advancements in ostomy technology but it would be cool if it could be setup remotely. I would be worried about your knees hitting the bag when pedaling. Is that an issue for you?

Stay healthy and hydrated.

BTW, on the plus side, you never have to worry about high cholesterol again.:thumbsup:


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## mtnbiker72 (Jan 22, 2007)

treilley said:


> I have not looked into any of the recent advancements in ostomy technology but it would be cool if it could be setup remotely. I would be worried about your knees hitting the bag when pedaling. Is that an issue for you?
> 
> Stay healthy and hydrated.
> 
> BTW, on the plus side, you never have to worry about high cholesterol again.:thumbsup:


I use bib shorts and for MTB an Ostomy Armor device which keeps things tucked away and protected. Since the bag is firmley pressed against my waist and thigh there is no issues with hitting my leg. I managed to lug around my 29# singlespeed this week and only walked one steep hill because I lost traction. Then did a road ride the next day. Here is a poor cell phone pic of me, you wouldn't even know I had an ileostomy if you saw me on the trail.


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## Bike Whisperer (Aug 7, 2012)

New name, same guy

Got another great single speed ride in and didn't have to walk any of the hills. It felt great, so great I went out and ate something I shouldn't have.

Dobt...I got a blockage that took all night to clear!!! Man, the physical pain was terrible but the emotional pain almost took me down. Serious flashbacks from last summer dying in the hospital. I'm bruised and battered on the inside but I'm OK and ready for another ride this week.


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## EightySixed (Apr 14, 2011)

I was checking out ostomy armors earlier today and decided to have a look here as well. I have Crohn's Disease and am in a pretty rough spot right now, trying that new Tysabiri Esque medicine called Vedolizumab that was just approved a few weeks ago or we are going through with a full removal of the large intestine. I just want to ride and race again, I am a former Cat 2 Delaware state champion in xc, quickly rising and should have been racing 1 by all good measure. Alas the crohns kept me to a few races year at best. I've followed some of you blog the past few years Bike Whisperer. I dont understand the stigma of mtbers rocking lycra on the trails? I'm more embarrassed at the thought of triathlon training and swimming all those miles a week at the YMCA rather than wearing bibs! But hey suppose its just the racer in my blood. 

I was wondering how is everything holding up? I had known about the ostomy armor from previous searches but the other links look pretty cool too. These companies really do a hell of a great job at protection and concealment. 

Not as daunting, Now that it's a toss of the coin to become a reality. You should check out Well Apps "GI Monitor" on your phone or the computer, I have it and have met some wonderful people via the app- It would be great to have another member that rides on there!

Anyhow,
Hope all is well
Justin


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## EightySixed (Apr 14, 2011)

mmountainbiker said:


> use your camel...err poopback


You, are a clown.


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## Chill (Jul 7, 2014)

I am just now feeling myself again after the better part of 4 years of surgeries/recoveries, the last one being 20 months ago. The first was a shoulder repair followed by 3 abdominal surgeries. I had diverticulosis and one of the diverticula ruptured resulting in removal of 12" of my sigmoid colon and 5 months with an ostomy bag. The bag wasn't as bad as I thought it would be, except when "it" would fart loudly in public (and I'd crack up laughing-what else could I do?) but I was glad to get rid of it. The colostomy takedown (isn't that a wrestling move?) got infected and that meant 6 months of visits to a wound specialist and eventually an incisional hernia and another surgery to repair that. I now have a 150x200mm biological mesh holding my guts in (I hope) .

I did ride throughout it all but couldn't ride much off road as the bouncing was too unpleasant. I still need to wear a motorcycle kidney belt for longer rides to avoid discomfort, but it seems to be getting better with time. My average speeds are back to where they were pre-surgeries, and with a new and improved outlook on life I am more pumped than ever to keep going. My biggest fear is of another incisional hernia. 

How do you guys who have had similar surgeries feel when riding? Any danger of hernias?

Glad you're still at it!


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## Barman1 (Jan 8, 2014)

Edit...


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## Bike Whisperer (Aug 7, 2012)

EightySixed said:


> I was checking out ostomy armors earlier today and decided to have a look here as well. I have Crohn's Disease and am in a pretty rough spot right now, trying that new Tysabiri Esque medicine called Vedolizumab that was just approved a few weeks ago or we are going through with a full removal of the large intestine. I just want to ride and race again, I am a former Cat 2 Delaware state champion in xc, quickly rising and should have been racing 1 by all good measure. Alas the crohns kept me to a few races year at best. I've followed some of you blog the past few years Bike Whisperer. I dont understand the stigma of mtbers rocking lycra on the trails? I'm more embarrassed at the thought of triathlon training and swimming all those miles a week at the YMCA rather than wearing bibs! But hey suppose its just the racer in my blood.
> 
> I was wondering how is everything holding up? I had known about the ostomy armor from previous searches but the other links look pretty cool too. These companies really do a hell of a great job at protection and concealment.
> 
> ...


Well I ended up with two new hips this winter (double replacement) due to Avascular Necrosis. This was caused by the heavy Prednesone use that my doctors prescribed to me while I was fighting UC. So I am again, for the third time in as many years, recovering from major surgery. I have been riding some, but at under six months since the surgery I am still struggling a bit. It sucks because I know I need to ride more for fitness and yet I have to take things slow.

You don't know how strong you really are, until being strong is your only choice.

Keep up the good fight
-Aaron


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## longshanks (Jul 11, 2005)

Dude, you're an inspiration. If you ever find yourself in New England, I'd be honored to ride with you.


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## EightySixed (Apr 14, 2011)

Hey fellas, little update;

I have what is described as "severe" Crohn's disease that has only affected my colon (as far.) I ran out of medicinal options having failed all the heavy hitters (immunomodulators, chemo drugs, biologics ect.) it's been a nightmare. From cat 2 DE A/G champ two years running when I was just getting fit, to unable to ride at all save for a few meandering pedals here an there. 

I am scheduled for September 10th to have a complete removal of colon and a permanent ileostomy fitted. Just ran out of time for emerging medicines, I can't wait anymore! It'll be a tough recovery, but this dreadful disease is tough too!

I'm looking forward to getting advice and learning to adapt to my appliance, and finally getting back on the bike! I even had my XC race rig painted purple for Crohns an Colitis awareness this past winter! Can't wait to get riding regularly, have but a few rides on the setup so far. 
Fwiw. 
Scandium Voodoo Aizan custom paint
Reba RLT
CK headset
Thompson stem/seatpost
Enve flat bar
Handbuilt DT 240's/DT SuperComp spokes to Mavic TN719 tubeless
WolfTooth D/S 32t up front mate to a (poorly done by me) Jones XTR M960 Crank
XT 785 elsewhere
Fizik Aliante saddle/ESI grips and Conti Rubber

First couple rides were sweet. I'll post a pic if someone wants. 

Can't wait to be amongst Whisperer, Rollin' With No Colon!
Next chapter of life, Onward!

Until next time my friends. Ride Hard!


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## Bike Whisperer (Aug 7, 2012)

EightySixed said:


> Hey fellas, little update;
> 
> I have what is described as "severe" Crohn's disease that has only affected my colon (as far.) I ran out of medicinal options having failed all the heavy hitters (immunomodulators, chemo drugs, biologics ect.) it's been a nightmare. From cat 2 DE A/G champ two years running when I was just getting fit, to unable to ride at all save for a few meandering pedals here an there.
> 
> ...


I know there is a lot of fear with such a big change, but not needing to use the toilet 12x a day makes life a lot easier. Wraps and bib shorts are my method for most rides, Ostomy Armor for rides where I am concerned about crashing.

It's not all flowers and sunshine, but I have been able to keep a full-time job and do most activities with an ostomy. Now having my hips replaced this winter has been a little harder to recover from but I am getting there.

Good luck and keep on rolling!


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## ajnast (May 28, 2015)

This is a relatively old thread and this is my first post in the forums - posting here may be my mistake for either of those reasons.

It's been encouraging to read the stories here of you guys that have been able to keep up your riding passions despite the illnesses and surgeries. I was diagnosed with Crohn's about 11 months ago and needed to have surgery to have parts of my small and large intestine removed in December after my body became immune to medications I was taking.

I've recovered from surgery and have a temporary ileostomy bag. I love riding my bike around the bike paths in town after work to stay in shape and keep a mental edge on this disease (when it could be easy to mope around feeling sorry for myself). I'm no mountain biker like you fellows - we have no such hills in Easter North Dakota, but I'm hoping you'll be able to give me a couple pointers.

The last few weeks I've been having issues with my pouch leaking around the seal - the bag is fine (my mom sewed up some undies to be like the "ostomy secrets" stuff and it helps keep the bag under control), but it seems the seal around the stoma weakens and starts leaking after a couple days. I wear the belt to help keep it close to my body and prevent movement, but it doesn't seem to do the job all the time.

Do you guys have any ideas on what I can do to prevent this and stop blowing through my supplies? Do I need to drink more water so that the junk coming out isn't as thick or maybe stop riding altogether until I have surgery to reconnect my small and large intestine?

If you don't have any ideas, that's okay. I'll probably be going back for the reconnection surgery in the next few months. I could always try asking an ostomy nurse what they think too.

I hope you're all doing well!


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## Bike Whisperer (Aug 7, 2012)

ajnast said:


> This is a relatively old thread and this is my first post in the forums - posting here may be my mistake for either of those reasons.
> 
> It's been encouraging to read the stories here of you guys that have been able to keep up your riding passions despite the illnesses and surgeries. I was diagnosed with Crohn's about 11 months ago and needed to have surgery to have parts of my small and large intestine removed in December after my body became immune to medications I was taking.
> 
> ...


Are you using any kind of seal?

Conva-Tec Eakin Seals are very popular with the ostomy crowd for keeping your wafer sealed. I've used paste, strips, and moldable rings from Coloplast and they all work very well, but I prefer the moldable rings just because they are a perfect fit for me.

The other thing that really helps is using protection such as Ostomy Armor, Stoma Gear, or Stoma Plex. These not only provide you protection but help hold down the wafer and protect leaks.

Message me if you have any other questions.

-Aaron


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## Locoman (Jan 12, 2004)

mtnbiker72 said:


> Here is an update at 4 months since surgery.
> 
> I have been doing spin classes for the past two months using my Ostomysecrets wrap under my bibs which has worked just fine. I finally have made it back out on the trails. I was concerned about crashing so I picked up a product called Ostomy Armor.
> 
> Here I am back on the trail, I can ride just as well as I did before...probably better than the last few years since I am no longer sick!


Bravo! You are an inspiration x 1,000. Very glad to hear you're back on the trail!


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