Living with a Stoma
654 members165 posts

Getting Permanent Stoma

Hello i have had so callled Diverticulitus for over 5 yrs, which ive suffered, ive had various tests done, with very litte results, they have been unable to get the scope right in, so not getting good results, i want them to remove my bowel, and give me a perm stoma, cant suffer any more of this, they will prob find i have crohnons. think ive spelt it right, its my body at the end of the day, i have no life just now, cant go out, because of continuos accidents, so stay in all the time, its ruining my life, i want them to remove my bowel, and get perm stoma, i dont want to go for reversal.and it it all flares up again, cant take that chance, my lifes a misery, its my body, i know exactly how i feel. i will push for this no matter what. ive been recommended for surgery, have yet to speak to surgeon, waiting on my appointmnet.

4 Replies

I cannot advise on what is the best for you and you need to speak to your consultant for advice and support. I can tell you in my own experience I had suffered with ulcerative colitis for over twenty years then had bowel cancer so had to have the large bowel removed rather than cut the tumour out as the consultant was against trying to do alternative half measures, saying there were inherent problems, I am sure your consultant will explain. I was shocked and initially not happy with the thought of a stoma. However almost one year on now I am used to my stoma and ileostomy and in many ways it makes life simpler and less aggravation, it has its negatives in that occasionally the bag can leak and cause a mishap but this is rare. It was nowhere near the life stopper I thought it was going to be, sure its changed my active life a little, I am not lifting or doing heavy sports and activities, but can swim and run and do most things. I am heading for 63 years old so good luck to you whatever you decide.

1 like

Thanks for your comments, but I need to definatley get my bowel removed, as ive suffered for over 5 yrs, and cant take any more, its ruining my life, I cant go out, have to stay in all the time, couldn't have this all flare up again, and go through it all again, they have tried three times to get the scope in, but with great difficulty. having a perm stoma, doesn't bother me at all. I will have a life that's what matters, going to get my own doctor to refer me to get my bowel removed, so will see what happen s when I get my appt, they said a wait of 4-5 weeks, ive been waiting 3 mnths.


I suffered for years with what I thought was IBS, then had an infection in hospital when they perforated my bowel during a colonoscopy. I then had an ileostomy for 5 months. They discovered that I had in fact been suffering from diverticulitis all the time. I had it reversed 18 months ago and have been completely pain free since then, kind of wish I'd had it done years ago. So don't rule out reversal completely, it may work for you as with me.


im getting a reversal done on 30th may, so i do hope ot works for me, was told they didnt think i would get keyhole surgery, but they are doing it, so a bit confused there,


You may also like...