Holding out for Cecostomy

[23Kayla]

Hi,
So I've been through the ringer of tests since birth, when I was born with a fistula and had to have pull-through surgery, which has since hurt my GI muscle function, on top of gluten sensitivity, IBS to the Nth degree, a redundant colon and now C. Diff!!

I'm being followed by GI specialists at 3 different major hospitals, all of which have agreed on a cecostomy (after nearly a year of debating) to start the overall management process. I'm currently on Flagyl and amitiza, plus copious amounts of dulcolax to feel half-normal.

I don't have a surgery date set, I meet with the surgeon on Sept. 15th, but originally was told I'd have it all done before college began... Which hasn't happened, since I move in in two days.

Has anyone else had/ or is planning on having a CHAIT cecostomy? My doctor says I'll likely have the cecostomy for two or three years and then an ileostomy.
I just really want surgery!!!

 

[DJW]

Hi.

You really have been through it.

Sending you my support.

 

[UnXmas]

I have to admit that I'd not heard of a cecostomy before reading your post. I googled it and it looks like it's quite a new procedure. I have a permanent ileostomy, and one of the reasons for me having it was that I had a redundant colon -well, they called mine "atonic", but I think it's pretty similar to what you're describing; hours and hours in the bathroom, straining and in pain and unable to finish a bowel movement, but then also diarrhoea and incontinence - are these the kind of symptoms you're getting as well?

My ileostomy has been a Godsend. Now it takes me two minutes to use the bathroom; it's quick and clean and painless and easy, and I empty and change the bags when I'm ready, not like when my digestive system would decide when it wanted me to use the bathroom, no matter how inconvenient the timing was.

I really hope your surgery is successful also - whether you just have the cecostomy or end up with the ileostomy.

I'm sorry that you haven't been able to get it sorted in time for college, but don't worry. You'll have plenty of time to catch up, and your college should make allowances if you're absent for genuine medical reasons. And hopefully you'll be able to go back to the college feeling much better than you do now!