I am preparing for ileostomy reversal, probably in May or June. The surgeons want to meet with me next month to discuss the risks. I thought I was getting prepared for direct connection, small colon to anus. I think, as I have mentioned here previously, I only found out recently that I have about a Coca-Cola can size of a colon left. Today I read that proctitis due to diversion is just about a guarantee with a subtotal colectomy, which can result later in proctectomy or removal of rectum and anus. This is me paraphrasing a comment that I read online. I know that the right thing to do is talk to my doctors, but I was wondering beforehand if anybody has had this experience? I thought that when you get a reversal without a J-pouch, the reconnection is for life? I had a really bad case of C. diff, so no inflammation like cancer beforehand. Any comments are much appreciated in advance. I am grateful for this group daily. You all are a great bunch of people. Sorry if this is a bit repetitive for some, just trying to summarize my story for people who haven't seen my posts before.
Hey 😀 I know we've talked a little about this. When you say the amount of colon left is the length of a can of Coke, is that actual colon? Then you still have some rectum too? Or did they remove the rectum and all you have left is anus? If you have rectum left, the amount they can leave you of that is important. I have 8” and that's it, end of the small intestine, attached to the rectum. I very rarely will eat a lot at one time, that's not a big deal for me though… before my colectomy (a subtotal colectomy) I was only eating maybe every 3 days because the condition had gotten so bad. So now eating multiple times a day for me is like a chore 😜 You won't find a lot about ileorectal anastomosis online… it's much easier to find information about a J-pouch. I think there are maybe 2 people other than me active on this site right now with an IRA? (I'm just basing this on posts I've seen). I had proctitis acting up days before the surgery and I asked the surgeon if that changed anything for me and she said no, we were good to move ahead with the plan. Their hope was that it would calm down once they removed my colon and so far so good. If for some reason something is amiss down the road, and proctitis could not get under control, the plan would be an end ileostomy for me.
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 39,591 members.
But, it's not all about ostomy. We talk about everything.
Many come here for advice, others find lasting friendships, and some have even found love.
"This group has been my go-to during my loneliest hours ...", one member said. And it's true, people here are honest and genuinely care.
🛑 Privacy is very important - there are many features only visible to members.
39,591 members
About five inches of large colon (12 cm, they said maybe more once they physically get in there to look). They didn't touch anything below that. Yes, it's hard to find somebody with a similar story, even here. I've also heard that sometimes the small colon takes on the role of absorbing more water, but I can't find any studies to prove that. I'm wondering if you have heard the same? I just don't want to go through any more surgery if I can help it, and the only reason that I've decided to do the reconnection is the idea that I would have it for the future and the “what if” is too much for me to deal with plus my insurance is still sending cheap quality bags. If I have to go back to the bag though, I can cope, but I want to know what are the possibilities. At the same time, because of the people here, I know I can cope if I have to with my bag.
Follow our tips to help keep you on track
Small colon, I was told, doesn't absorb water. Large colon does.
Just citing their job descriptions.
I too had a stump, as it's referred to. 6" left for hook up later... nope, never happened.
If you have proctitis now, it's not good to get hooked up because that inflammation is there now and it will be there after hooked up.
For several years, they tried controlling my proctitis with all the meds out there. Nothing worked long term.
Gag.
Chron's developed in the stump. No question left. Ken butt done. Permanent ileo. I know you have done much research. As long as you are aware of likely scenarios. Wishing you the best. Good luck.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
