ILEOSTOMY Reversal problems

Hello, 

I sympathise with you entirely. I had my reversal in 2013 and I still suffer from incontinence and it really does control my life. I take colystyramine to stabilisé the acid diarrhea but still have to go at least 8 times a day. Without medication it is up to 20 times.

I am seriously considering having a stoma again to give me some independence. Do you have any advice.?

Hi, had my reversal nearly 12 months ago. Loperamide is a lifesaver for me. Need at least 20 minutes every morning on the toilet. Sometimes funny sometimes solid. Sometimes terrible stomach cramps and have to go again urgently. Most of the time everything is perfect, not missing Gollum at all. Advice from stoma nurses invaluable. Worst thing of all is the wind and the smell, drives my wife insane ! ! Best of luck, never regretted the reversal for one minute, however. Peter.

Glad to hear it worked for you. Unfortunately I am pretty much confined to the house. Loperamide has no effect whatsoever because it's role is to slow down peristalsis, and I my case, in addition to having BAM, I also have paralysis of the colon.

Thank very much for getting in contact. I really wish you all the best. 

Hello, 

Like you, I suffer from terrible diarrhea and this is 9 years after the reversal.

I had colorectal cancer in 2012. It was complicated with 2 peritonitis infections and I was left with a stoma. (I was 47).it was always deemed temporary andd a reversal was performed 9 months later.

This left me with chronic non stop diarrhea and blisters around my anus from the acid. It was concluded that i suffer from bile acid malabsorption(BAM). 

Having lived with this for the last 8 years I have no independence, constantly looking for public toilet and spend most of my time at home where I spend at least 40 mins to evacuate, 8 times a day. It is really dictating my life. 

I am looking to chat with people who have chosen to have a colostomy for comfort reasons to help me in my decision. 

When I had my first stoma, it leaked, was very liquid and very acid. But this was because I suffered from BAM which was not diagnosed at the time. Therfore I am left with a very negative experience of dealing with a stoma and bag. Now my stools are less acid but still loose and my intestine seems to be paralysed so there is always a build up of stools in it.

Have you gone back to a bag? Will a bag help. Would it give me my independence or would it just be an additional obstacle?