Request a stoma bag yourself

Are you considering surgery ? Have you had surgery ? Trying to cope with colostomy ? Share your experience with others here.
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Request a stoma bag yourself

Post by redbee11 »


I'm new to this site and I'm a colitis suffer. I've been on so many medications that haven't helped and the only thing that has is steriods which I am now very relectant to take because of horrid side effects.

Has anyone requested a stoma bag without the doctor/consultant suggesting this first? I had a camera test done yesterday which showed my colitis continues to spread even after 7 infusions of infliximab, I'm also taking mercaptopurine, steriod foam enema's, salofalc suppositories and prebiotics. I'm really tired of being pumped with drugs and want a chance of somewhat a normal life of not dashing to the loo and the continous cramping that comes with this illness.

Any suggests or advice for surgery to be the next option or how to go about it would be brilliant and welcoming!


Louise x

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Re: Request a stoma bag yourself

Post by philayl63 »

Hi Louise, I asked about a ileostomy as like yourself for 13 years I was fed up of living half a life, the other half I spent in the toilet. Four years on and I can't tell how pleasant it has been not to have to worry about where the nearest toilet is, no pain or "accidents". If I was driving down a motorway and saw a sign that said next services 30 miles I would immediately go into panic mode, now I look at the sign and say to myself "so what!". it is a big step to take and you need to discuss it with your specialist or the specialist nurse if you have one. If you are bored sometime have a look through my thread here:- viewtopic.php?f=24&t=6148 good luck with whatever you decide and keep us informed, you can always ask more questions as they occur to you, there are plenty of people on here with lots of experience. Phil

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Re: Request a stoma bag yourself

Post by rogalin47 »

Hi Louise
You are perfectly within your rights to request surgery. I would ask for a referral to the stoma nurse to get as much info as possible and then a referral to a gastro surgeon. Do your research beforehand so you know exactly what youre asking for. You've obviously tried most of the meds available for treatment of uc and if nothing seems to be helping then surgery seems to be the logical next step. Its a huge decision to make but
life with a stoma is far superior to life with uc.

I had my surgery almost four years ago but wish I'd had it done years before that. Life no longer revolves around toilets. I'm happy and healthy and for the first time in a quarter of a century I am in control of my poop not the other way round.

Feel free to ask any questions on here, nothing is too small, too silly or too rude! There will always be someone along who will be more than happy to offer help and advice.

21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

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Re: Request a stoma bag yourself

Post by Karencraig »

Just to agree with the other two. You would ask for a stoma, or ileostomy (the type of stoma). you then wear a bag over the stoma. Noone is going to think you are asking on a whim. If you think its the right route for you, explore, ask, get prepared. And you'll probably be more prepared than most of us, as you are asking for surgery, rather than the shock of being told you need it.

Best of luck - any questions just post.

EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

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