Advice Needed: Reversal Surgery Concerns - Scared to Have It Done, Need Questions for Surgeon

I am going to see my doctor on Tues., July 1 about having a reversal done. I don't mind telling you I am scared to death to have it done from some of the horror stories I have heard. Can those who have had it done or know of people that have had one done please give me some questions to ask the surgeon.

One reason I am scared is that the doctor that performed my surgery was with this practice for over 30 years and supposed to be one of the best but in less than a month of doing my surgery, he was let go or so I was led to believe and I have no idea why, maybe he was not capable of doing surgery anymore.

My stoma is different than most, it is flat to my stomach almost like a belly button and I know from what I have seen and talked to others this is strange. I was told that I had a minimum of six months before I could have the reversal and that time is here. My husband is worried about the muscle that I haven't used in six months being too relaxed and that I might have problems adjusting back to the old way of doing things.

I really need as much information about having this done and the complications that can follow so I can make a sound decision on whether to have it done or not. I am a two-time cancer survivor, have had a kidney removed, had a collapsed lung when they did my colostomy and was in ICU for a week, am facing another minor surgery and I am just beside myself on what to do.

Thanks in advance for any information.

Hey survivor48 :)

I had the reversal surgery for my temporary loop ileostomy on the 26/06/14, so I am a very new pouch owner, but I hope I can share with you my experiences so far, and hopefully they might come of some help to yourself.

It is completely normal to be very scared about this operation, even after undergoing other, probably a lot more serious operations! I had emergency surgery to remove my colon and create an end ileostomy in late 2011 due to ulcerative colitis, and I then had another major surgery to create the pouch and temporary loop ileo in 2012. The build up to this recent operation, I found to be a lot harder than expected because the prospect of having to relearn how to go to the toilet can be very daunting. You think you won't know how to do it and you doubt everything. It is also, in a way, a loss of control at first, that you did have with a colostomy bag, but this is not something that is permanent.

I am happy to tell you that for me it has not been as difficult as I expected, and I am already starting to feel more normal again. Our medical histories are very different, and I know it varies from person to person, but I believe that you do have to expect that on the internet horror stories are what you are likely to read, because most individuals who have had a smooth ride naturally do not feel the need to share their experiences as much with others.

I would be prepared to ask questions about the recovery time, and the ways in which would benefit you in preparation for the surgery (pelvic floor exercises are great!), and I would definitely recommend writing all the questions you can think of down before your appointment as I made the mistake of not doing this.

I have had no accidents or leakages at all yet and no major difficulty holding onto a bowel movement for extended periods despite having a colostomy bag for 3 years! I would recommend anyone to give the reversal a chance.

When I was being discharged from the hospital, my stoma nurse handed me a few leaflets by the ileostomy internal pouch support group, and one in particular which is titled 'Is that a new pouch you've got? (or do you always walk like that?)' by Dick O'Grady I have found to be a massive help, and I would recommend checking it out for yourself.

I wish you luck with everything and hope I may have helped in some way :)

Jennie.

Thank you so much Jennie... I was beginning to think I was alone out here. I guess you are right, those who have had the reversal have gone on with their lives and don't care to share... a real shame. Your comments were very helpful because I didn't think about asking my doctor about any exercises, etc. that I could do to help prepare for the reversal surgery.

I'm happy to hear that I could have helped :) If you have any other questions, feel free to ask!

Jennie :)

Jennie,

Well, I have decided to wait another six months and go back to the doctor in December. If all is okay, I will have the surgery done in January.

I just didn't feel good about the visit because he came into the room to see me without ever looking at my records and was just going to schedule me for surgery. When I asked him how he would know if I was ready for the reversal since the surgeon that did the surgery said a minimum of six months, he replied that he would have to look at my post-op records. If he could not decide by looking at the records, then he would put contrast in the stoma and do a test...guess a CT Scan but not sure.

I guess I am used to most of my doctors kind of looking at my records before seeing me.

I had a reversal three months after the original surgery, due to diverticulitis. It was scheduled for an hour. It took 1 1/2 hours to remove all the scar tissue before reversal could begin. Then, another hour for the surgery. But then, all went well. I spent 7 days in the hospital - the first ones were pretty rough.

Some advice - remember this is a huge surgery - don't rush recovery. Take all the help that is offered to you. Be sure to take some adult diapers with you to the hospital. The ones my hospital offered were horrible. You will have some accidents. Cannot be avoided. Diapers are not derogatory - they will make things much easier for you. If you make a mess, just ring for the nurse. While you are in the bathroom, cleaning yourself up, the floor, bed, etc. will be cleaned up by someone. They expect it, have seen it before, know it is not your fault.

Take your time afterwards. Follow the doctor's orders regarding food. Look up online, everything you can. There is a wealth of information, some good, some not so good. Good luck!

I had my colostomy reversed on Christmas Day 2012 and then had an ileostomy for 15 months. I just had the ileostomy reversed exactly four months ago. I was pooping normally after a week and up and about in about 2 days. I took around eight weeks to feel close to normal again. It is impossible to predict what will happen to you. Every case is individual and depends on what else is going on. Looking for encouragement here is fine, but there is no standard outcome. All I can say is the anticipation and anxiety of the surgery is much worse than the surgery itself. However, recovery can be a drag. Good luck!

I wasn't sure what to do either. I waited 3.5 years to get my colostomy reversed (12/12), and finally decided to just do it. Wish I had done it sooner. However, make sure you are completely comfortable with the doctor performing the surgery. I did my research, and got a few recommendations.

Sure, it took a little while to get my body performing the way it used to. I know everyone's recovery is different.

Best wishes!

I had my Hartman procedure reversal 4 months after my original ostomy surgery for a ruptured colon-

Healing was quicker. I went in with a positive attitude. 5-day hospital stay then home to recover. So much easier than the first go-round! I got my life back. I know it's not an option for everyone, but I was fortunate it worked out. Not everyone gets the same hand dealt to them. We all just deal with what we are given. I was able to run a half marathon 8 months later. Just a goal I had. Ask all the questions you need, get a good Dr. referral. Best wishes.