Ileostomy or BCIR (Barnett Continent Intestinal Reservoir) post total colectomy??

Hi Lolly
Sorry to hear you sounding so desperate :-( I'm sorry you're still going through this with no real answers and I can understand how scared you must feel. 7 years is a very long time to be suffering like this and you're right you can't go on like this. I was in a similar situation after only 9 months of suffering, and I literally begged my surgeon to put the bag back.. and it was the best decision I made.

The BCIR (Kock pouch) is done very rarely and as far as I know a very complicated procedure with a very high failure rate. I mentioned it to my surgeon once and he told me we don't even have a surgeon in the UK who does it anymore. I wouldn't even contemplate it.

An ileostomy does sound like your best option and I know it sounds awful trust me it really isn't. Others will chime in too no doubt, but we'll all be in agreement. Your quality of life will be significantly better than it is now. My ileostomy gave me my life back - to the point where I can now compete in triathlons again

Getting your head around the bag to begin with may be tough - everyone copes differently - but for the majority of folks in your situation you'll probably find your life is so much better, that you'll be grateful for it and it won't be anywhere near as hard as you might fear.

If you have the correct pouches and products, you wont' leak. There were times to start with I had a few incidents, but once I got onto the right bags, I haven't looked back. In fact I don't even take my kit out with me anymore I feel that confident I go swimming, cycling, wear white linen trousers (obviously not at the same time !) and don't bat an eyelid.

Sometimes the stoma makes 'farting' noises.. but it' no different to your stomach rumbling or simply just farting. So don't worry about that. It can bulge when it's full, but you just go to the loo to empty and no-one will know.

As for clothes.. the only thing I don't wear anymore is hipster jeans as they cut right across the stoma. So I wear high waisted jeans. But everything else is the same. I wear tight dresses, tops, jeans, shorts and even a bikini on my holiday To begin with you'll be swollen and sore, but you'll soon settle down and be able to wear normal clothes again. It's all down to wearing the right underwear actually... create a nice smooth base and you can pretty much wear what you like. Thongs and hipster knickers might not be on the cards anymore but it's a small price to pay

I can understand how scary this must be for you, but your situation is desperate and you don't have many options. Please have a read of my blog and there are some photos on there of me.. bet you can't even see the bag! Someone else on here has a website for ostomy fashion which might also help.

Can I just ask why you need to be away for 4 weeks from your family though?

Be strong.. we're all here for you and you will get through this and be a million times better. Big hugs x

Hi lolly

i have no knowledge of that procedure.  an ileostomy is the only way you can get your life back i know... took me 8 months to finally take the plunge and i am now going back to it again in a few weeks. 

i also have a small waist compared with hip ratio and have always liked to show it off in bodycon clothes as like you baggy tops make me look shapeless and  look like a huge bag!

dont worry your body shape will hardly change - i stil have a flat tum like before (although before it was often bloated).  i have some pics of my wearing close fit dress.  you can still wear your low cut jeans etc - just wear what you normaly wear when you get marked up for the stoma and the stoma will be place above where your jeans go so they dont cut in on it.  however it all depends on the individual body shape/rolls of fat etc.  just know that the stoma will be on the roll of fat and not in the dent/crease, so you can have a look for yourself where it may go. hope that helps. x

Thanks for all the feedback, this forum really is fantastic!
Ironmum, sorry to hear about the bad time you're having at the moment, hope you feel better soon and that your specialist can help you on Fri.
Thanks for all the advice re the clothing.

I was told i need to be in hosp for 7 to 10 days and then an additional 2 weeks post op in the area before they will let me fly home, guess it's for follow up with the stoma nurse to make sure i'm coping before that let me go home?

Sue, thanks for your input re the BCIR, sounds rather complicated, esp living so far away from where the surgeries would be performed!! Bit scary if there are complications post op and one is half way across the world!! I made contact with St Marks but the consultant I spoke to said that she deals more with UC and Crohns. I have also been told that Royal London would be a good option for my problem. Thought about getting a telephonic consultation before flying all the way to UK. I live in Africa!! I am a UK citizen though, by descent, haven't ever lived there.

Really not sure what to do - still so undecided re the ileostomy, esp if i have a "good" day, then a think i should just carry on the way i have been!!!

Thanks for all the support