What do I ask the surgeons about a possible reversal?

Hi Guys:

I made an appointment for the second week of January to talk to the doctors about a possible reversal. I posted recently about my story. I’m the one that asked for successful River soul stories after number of years. Just a short recap, I’m disabled I use a wheelchair, but I can walk some. In September I had an emergency ostomy because I lost my colon due to CDIFF and I had E. coli as well. My rectum wasn’t touched and I didn’t have any bowel issues before that except the suspicion of inflammation because I had intermittent lower left side pain. They’re telling me I will go maximum six times a day with full control after the reversal is done. But I never really had a chance to talk to them, and as I explained before, I didn’t even know, I had an ileostomy and not a colostomy until well after I left the hospital because no education was given. What do I ask them at the appointment around the surgery? I mean, my mind is full of questions, but I was wondering if you guys can help pinpoint Some important things that I should ask. Also, I have several friends telling me that I shouldn’t be on here on this forum because they think it’s causing me stress and they say that I’m not gonna know what to expect until it happens because my story will be unique. But I feel like I’ve read some things on here that say that the doctors didn’t prepare people for the reversal and I feel like I need to be on here to figure out information. I guess what I’m asking is is there anything you guys wish you asked the surgeon before an ileostomy reversal? I also saw some comments about increased cancer risk after reversal, and I don’t understand why that would be? I’m concerned about that. And then this thing about Inflammation I think it’s called pouchitis after Procedure and I just wanna know about that. I don’t understand much about that. What it is why it happens? Other than that, I don’t know what else to ask. I’m editing this to add something else I know that I wanna ask them and I want to check in with you guys too. I believe on another form I read that Some guy said the stapling is a bad idea with reversal because it can cause narrowing and then it makes it harder for the stuff to come out and that the surgeons do it because they’re hasty with their time or something. That it takes more time to sew the closure, but that the sewing is better. Does anybody have any opinions on this? Stapling versus no stapling?

You’ll need to know what type of ileostomy you had to determine if it can be reversed. Loop ileostomies can often be reversed. That’s a good place to start. Ask how your life will be impacted with a reversal. Diet, bowel movements, restrictions, etc. Good luck!

I think it’s an end ileostomy I know it’s not a loop one. Just know this from pictures online. Thank you for the advice. They said it can be directly connected to the bottom region because they didn’t touch that area. 

Ask surgeon and hospital about post surgical infection rates.  

Think about your quality of life now.  And quality of life after a successful reversal,  where you're on the toliet 6 times a day.  Surgeon/doctor might have said 6 times a day, but they really don't know for sure.  It is a gamble.  You should have an opportunity to ask them questions, ask how previous patients ended up.  

Good luck

No before this, it was maybe once a day and after with the bag I’m in the bathroom 10 to 12 times a day.

Hi JVM i,ve had an ilieo for 30 some years and what works for me to thicken output is foods like bannanas, applesauce, peanut butter, potatos but i also take a generic immodium after breakfast and another after supper and that slows down the output. there,s another website called uoaa.org that might be helpful for the area you live to help you find more info and maybe a local ostomy group.

Hi jvm,one suggestion  I have is to get a pen and paper. List the questions  you have . You wrote them out on the forum. Find out exactly  the type of ileostomy you  have. Try to do some research  . I don't  understand  why your friends  would advise you not to be on this site. We are all here to help one another.  Your Dr. Will answer your questions; you just need to be to the point. The reason I list mine on paper; also so that I won't  forget. Good luck.

My friends think that I shouldn’t read the negative stories but I want to be informed good and bad. I want to be feeling informed fully. The negative stories do freak me out, but I’d rather know. The surgeons are sounding like it’s gonna be a piece of Cake at least that was what I felt in the hospital. I don’t think it’s gonna be that easy. Everybody here says that the first few months are difficult maybe a few people didn’t. I’d rather be prepared and I do wish my friends would be supportive. Thank you for the writing it down advice.

Just wanting to reply to this post saying that I think it went well. I asked all the questions. I also found out that I have About 5 inches of colon left, which is a lot more than I thought I had. I thought I had like a half an inch or next to nothing. I’m still struggling mentally, but now I feel more hopeful. I have tests at the end of the month to see if I’m absolutely eligible for a reversal.

Just an update to say that I was approved for reversal today. The testing was not fun, and I got water all over the place and I felt so nauseous taking the stuff for the scan. But everything went well no leaking. I decided on my own that I’m going to wait until maybe September to make it one year since my operation because my immune system has still not recovered from the bacterial infection that took my colon or most of it (I found out that I have a soda can of a big colon left about 5 inches) So I’m gonna wait a little longer. I’m really grateful for everybody’s support and kindness, and somebody suggested the psyllium husks to me and that has been very helpful. If I take one a day doesn’t do anything one capsule but if I take like four or five, it does some thing and rice and bananas have been a big help along with potatoes. I have been getting better at firming up the output, and as I have told Iggy I wasn’t being patient enough with the silicone ring. I wasn’t waiting for it to heat up. I wasn’t doing a good job with the tape around the base plate and too much powder so I was getting leaks and it was really really getting in my head but I have been able to control the leaking and I’m learning how to handle the bag much better and I do want the reversal but because of you guys and I guess because of the passage of time, keeping the bag wouldn’t be the worst thing and that’s better than where I was because even last week I was feeling very sad. There are two people on here that have had direct like the attachments of the colon to the rectum that have spoken to me and you guys know who you are and you’ve been very helpful. I feel a lot better about all possibilities and I owe a big debt of gratitude to you guys.