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Ileostomy reversal

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Old 01-07-2012, 08:16 AM   #1
Join Date: Jan 2012
Location: southern californa
Posts: 1
Sukysgirl HB User
Ileostomy reversal

I had surgery to remove a cancerous tumor and my large colon and rectum were removed. At the time of the surgery a internal pouch was inserted (for future surgery).

It's been nearly 3 months since my surgery and I have had a number of problems and have been back in the hospital twice. I developed a clot in my lungs and am on meds for that.

I have been having a lot of leaking from my ileostomy bag (have spent many a day and night crying). The first few weeks I had no problem but now it's been a mess, every day. I have severe skin irritation and am using the powder, the spray and i use the paste instead of the ring barrier thingy.

IT seems everything I've read has been extremely negative regarding reversal surgery. They plan to do that to me but I am terrified about not having control over my bowels. How could I even leave my house? Is there anyone out there that has a successful reversal of this kind?

I had chemo and radiation prior to my surgery and they (at first) didn't think they could do a reversal. They said I had a history of ulcerative colitis but I never heard that before. I remember 5 years prior being told I had 'mild colitis'. Then the Dr's felt there may be too much damage from the radiation but during surgery they felt it would be OK to try to set me up for future reversal surgery. The pouch was put in place during initial surgery.

Anyone have success or failure story?

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Old 02-08-2012, 11:52 PM   #2
Join Date: Jan 2012
Location: New Zealand
Posts: 6
Shellstar HB User
Re: Ileostomy reversal

Hi there

I had my reversal about two months ago now and it was very successful.

Like you I had been online before it and read all the horror stories and worked myself up into an anxious mess but I think the thing to remember is that everyone is different and everyone's body is different. As my surgeon put it, "the bowel does what the bowel wants."

I had a large part of my large colon removed - they thought I had cancer, but it turned out to be endometrial cells. I had been sick for four years. I had the temporary ileostomy for about 4 months then the reversal. After the reversal I had the totally opposite experience to all the internet stories - I was totally constipated. Didn't go for 5 days, then when I did finally go it was like rabbit-poo!

I wouldn't say my bowel has returned to 'normal' yet... I go about twice a day and I'm still quite constipated, but it's totally controllable and no big hassle at all.

I'm really sorry to hear you are having leaking issues with your bag. I had a few leaks until they got me onto the right type of bag for my shape so I know all about the tears and the waking up at night to a mess etc. Do you have a stoma nurse in the area where you live? That's who sorted me out. I knew I was in good hands when she said, "It doesn't matter what the issue is, we can fix it."

All the best

Old 03-21-2012, 09:03 AM   #3
Join Date: Mar 2012
Location: Cambridge, ON Canada
Posts: 1
charmy98 HB User
Re: Ileostomy reversal

RE: Reversal

I had surgery on the 8th September for Colon Cancer, the surgeon took out 2 sections as well as me having a total hysterectomy on the same day. The one thing I did not want to wake up with was any type of bag hanging off me. Well I had the surgery I thought all had gone well and on the 9th day, the day before I was due to go home all hell broke loose. I ended up splitting my stitches open but I also had a leak from the colon into my body, I spent nearly 2 months in hospital and 5 days in intensive care.

When I awoke from the second surgery I had an ileostomy bag attached. I was in total shock. When the surgeon came to talk to me he said it was only temporary but had to be done. Well like you Sukysgirl I had a terrible time with the bag leaking, I had a fistula which made it very difficult for the bag to be placed properly. My skin was so irritated I couldn't even stand the paste being put on my skin.
I couldn't wait to have the reversal operation which took place on the 8th Jan 2012. I came home after 8 days in hospital, my bowels were all over the place and the first few days I was going to the bathroom up to 17 times a day! I am now happy to say I am only now going between 4 to 6 times a day however my bowel motions are not back to normal yet, they are still very loose and like someone else had said like a rabbit poo.

I would suggest you go ahead and have the reversal it's uncomfortable for the first couple of weeks and you wonder if you will ever be "normal" again but you will it just takes time. I am now able to go out shopping by myself I just make sure I don't eat anything before going out. Just know where all your restrooms are beforehand. I wish you the best in whatever you decide.

Last edited by moderator2; 03-21-2012 at 09:35 AM.

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