I know this is probably a bit of a long shot, but here goes:
A mate of mine (not a forum member here) has asked me to post a brief synopsis of his story in the hope that it will generate a little help/reassurance/support in terms of the difficult decision that he’s going to be making in the near future.

He’s in his early 40’s, a hard-working family man and keen mtb rider. 3 or 4 years ago his health started deteriorating, culminating in a diagnosis of Crohns disease. Since diagnosis he’s been on a treadmill of different treatments and strategies to try and bring him some relief and return him to a manageable ‘normality’. However, the constant setbacks and deteriorating health have taken their toll and he is now considering elective surgery to, in his own words, “get my life back”. This will involve a colostomy and the permanent use of stoma bags. As you might imagine, it’s a difficult decision, but this course is now looking more and more likely.

So, good people of stw, has anyone else had any experience of this kind of surgery and particularly the impact, or not, in terms of riding a bike afterwards? He’s just after some practical ‘real world’ advice of what to expect and how to handle the situation both practically and in terms of the hygiene requirements given the often filthy trail conditions.

If you’d like to comment but would prefer to keep your anonimity then please drop me an email (in strictest confidence) instead of posting here. My mate is facing a tough time and would really appreciate any help.

Thanks in advance folks.

My brother has crohns. As a result of various procedures he is no longer able to cycle sitting down. He hasn’t had a colostomy yet, but is getting closer to the point where he will need one. Unfortunately I cannot offer any advice or answers to your questions. I would look at the national association of crohns and colitis website. They have some incredibly useful fact sheets. There is also a crohns helpline, which is operated part time. It is run by people with experience of crohns, so are well equipped to provide accurate information.
http://nacc.org.uk/content/general/ibdandme.asp
http://www.nacc.org.uk/content/services/nic.asp

Follow the links for fact sheets and helpline.
Hope this is useful to you.

I have a friend with a stoma (and often treat patients who have them). At the end of the day it is just crap in a bag.

Obviously ripping it off or damaging the bag cold be messy, painful and dangerous, but so could ripping a hole in your belly with a bar end! Really its down to how your mate feels with it. Embarresment is a big part of it, my mate stopped going to the gym for example as he didn’t like the communal shower showing off his “crap bag”. On the other hand, it really made a difference to his health and improved his quality of life no end.

We do call him crap bag though.

We do call him crap bag though.

You can always rely on blokes 🙂

Had a workmate with the same condition who went through with the colostomy option with excellent results. He was able to take up sport again as it made such a dramatic change to his life, although in this case he was a footballer/golfer not a biker, but we still spoke to him! We called him Dyson, as you could see what was inside him.

Total hi-jack but has he tried a totally wheat/grain/gluten free diet yet? It’s supposed to be able to fix this stuff with the right diet.

Might be some useful info here

UKC – Recommend me padded liners for medically sensitive bits

Quite a scary thing to face.

There must be some scope for a rugged bag to be developed that straps to the body better? Kind of like a camelbak in reverse – they are very good at not getting punctured. Would surely benefit lots of people who want to get back to activities they are afraid to do.

A friend of mine had the same surgery a few years ago and now works here:

http://www.ostomylifestyle.org/

She lives a very full and normal life.

Thanks for all the replies folks, my mate has read the thread and followed the links, and is very grateful your contributions.

Following an appointment with the consultant today my mate has now requested to be put on the waiting list for the surgery. To be honest, I get the impression that he feels quite relieved now that the decision has been made and he’s just keen to get on with it. I’ve talked him into getting a road bike to start with and he’s set a goal of riding from Huddersfield to Bridlington as his target. I’ve said I’ll go with him to keep him company. Roll on the day we set off cos it’ll mean he’s back to his old self again 😀

The ignorance about colostomy is amazing.

You don’t need to wear a bag all the time, you train the bowel to open at certain times. The rest of the time you can cover the stoma with a plaster if you want.