Hi, my name is Julie. I had emergency surgery on September 14. I had c-diff. I believe I also had E. coli as well, and I lost my colon except for maybe a little piece at the rectum. My small colon is still there And they didn’t touch my rectum. I was very sick with other things, and they say I needed a year to be strong enough to get the reversal. I was born with a physical disability and use a wheelchair. I’m almost 42. If I had a colostomy, I don’t think the bag would be so difficult because I guess it wouldn’t be so liquid but with an ileostomy it’s difficult and I have high output and a lot of liquid. I’ve been doing a lot of reading and I see that some post when they are going to get a reversal and maybe they post when they are just out of the reversal and maybe a month down the line or a year down the line but I want to know about successful stories for many years of people who have had the reversal. Particularly for ileostomy, I haven’t seen a lot of those. They said I did good in rehab, but rehab was very scary for me as I lost a lot of ability even just to sit up and I don’t wanna go through that again, but I also don’t want to keep this bag if I don’t have to. At the same time, I am afraid of incontinence, and the doctors are acting like I’ll just go six times a day to eight times a day and not worry about anything. They’re acting like I can eat anything I want. I didn’t even understand that I had an ileostomy and not a colostomy until well after my surgery because nobody really explained anything to me and I feel like the surgeons are trying to gloss over what could go wrong with the operation and I just want some kind of honest conversation so that I know what I’m supposed to expect. I know the first year is going to be hard, but what about after? And yes I know everybody is different but just please share your experiences So that I can get a better grounding of understanding on what may comes next for me. I’m also considering the carnivore diet because I heard that for people with a small colon and no large one that is best but it seems wild to me not to have any vegetables that said every time I try to have some my bag gets filled with air except potatoes don’t really seem to bother me, but I wonder about the long-term impact of a diet without a lot of vegetables. Sorry if this post seems a bit all over the place, but I’m still trying to cope with everything and I have so many questions. I’ve been on this forum pretty much since the first few weeks after surgery and I’m very grateful for all that I have read.
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,628 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
Advertisement
Hollister
Talking about having an ostomy can be uncomfortable for most people. Still, it's something you can't always avoid.
Learn about some strategies that can make it easier to talk about your stoma.
Learn about some strategies that can make it easier to talk about your stoma.
Advertisement
Hollister
We conducted a survey to better understand the impact that living with an ostomy has on sleep.
Learn the results of our ostomy sleep survey.
Learn the results of our ostomy sleep survey.