Colostomy vs Ileostomy: Seeking Advice and Personal Experiences

Hi,  I am new to the site and had a few questions.  
I had to have a colostomy just over a year ago due to a doctor screwing up my back.  I have cauda equine syndrome ( No bladder function and my nerves to my rectum stopped working) Since the colostomy I have had two revisions. For some reason my stoma keeps closing up. The doctor tried to put a scope through it to see what the problem was, but they could not even get the scope in an inch or two. I also have colonic bowel, (very slow moving), but when things do try to come out I have severe pain. Right now I am on TPN to get most of my nutrition. When I try to eat something more solid, I have more difficulty.  The surgeon says I should probably just have all the large bowel out and convert to an ileostomy.  Some days I have so much pain I am fine with this, but other days I am afraid.  I have had so many bowel surgeries and I am tired of of all the operations and just being in the hospital for sepsis and other infections. Has anyone had any of these issues or can anyone give some advise on what to do.  It seems all my doctors are encouraging to just get the ileostomy.  Help.......
Thanks so much

Hi Maryland Girl

I have an ileo and have no probs. My advice would be to follow the docs opinions if that is how you feel. Follow your gut feeling and if they can tell you more positively that the transformation from Colo to Ileo would be better for you, go by how you feel. I have had several operations myself and hope you trust yourself with your answer.

I would ask the docs one thing tho, and that would be "If I have the Ileo, would that stop all the of the blocking of the stoma and the rest of the problems?" I am sure you also have your own questions.

Cheers and hope you do well. Let us know.

JAx

You can contact me personally if you like.

Hello Maryland Girl: I live in Rockville Maryland so we are almost neighbors. You certainly have a lot to deal with, but if you have good doctors everything should be all right. What interests me is that doctors can have differing opinions. I tend to opt for the conservative approach but each case is different. Good luck to you. CSC

I've had an illeostomy for 4 years. In my experience they can be nasty to control without the right brand of bag. You need a two piece with and flange and separate bag ... something called a mouldable flange they are absolutely leak proof. Get that and it'll be a breeze you'll barely notice its there.
go for it its worth it