Successful Ileostomy Reversal Story - Inspiring Recovery Journey!

Jun 17, 2013 9:17 pm
I wanted to give a bit of my story for those considering an ileostomy reversal as I think the more information people have, the better.

I had emergency surgery for a volvulus (twisted bowel, I think) resulting in a loop ileostomy in March 2011. It was caused by a lymphoma in my abdomen that had been misdiagnosed as Crohn's disease for many months. I was diagnosed in February and started chemo before feeling really ill in March, culminating in horrific pain and fecal vomiting. By the time the surgeons decided to operate, I had no recordable blood pressure and, after a long surgery, spent 6 days in ICU, touch and go. After many weeks, I resumed chemo and experienced repeated fistulas until my chemo was stopped.

The plan was always to reverse once I was fit enough. I changed surgeons to a fantastic one who finally agreed to do the reversal in March of this year, two years and two days after the first op. He needed to resect the right half of my colon damaged by the lymphoma. I also lost my right kidney due to the damage done by the time they eventually diagnosed me.

The surgeon thought he may not be able to reverse and resect in one go and may need to put in another ileostomy while I healed. I was very surprised to wake up from surgery with no bag.

The first few days I felt okay but probably due to the epidural! After about four days, I was allowed to start eating a little, but that didn't last long. Although I had passed a little stool, probably what was already in the bowel as some would get passed the stoma prior to the op, I started to feel nauseous a lot and was diagnosed with an ileus, where the bowel won't start working. As well as this, I had a collection of yucky fluid in the space where my right half of the colon used to be, and they had to put a drain in. Before the drain, I was in agony for days as I wasn't processing oral painkillers and hard to get vein access. I recommend hot water bottles if you can find a nurse who will fill it up.

I was convinced they would have to give me another stoma as the bowel wouldn't start working for almost two weeks. I was really tired as I had no nutrition for weeks by that point. Luckily, after about two and a half weeks, the bowel 'woke up'. I started food very slowly and finally started passing some stool, although on the loose side, and also eventually some wind, which was odd after two years without. I didn't feel too sore but used nappy rash cream and moist toilet tissue.

I increased the food, and after four weeks, was allowed home. I was going to the bathroom about 8 times a day, sometimes rather urgently. The day after I got home, I felt awful and was in the toilet every half hour, passing very liquid stool - didn't always make it to the toilet as mine is downstairs. The hospital called me regularly and thought I had a stomach bug. Things improved after about a week. Since then, my bowel movements are less frequent, about five times a day, and the urgency has lessened. I returned to work 8 weeks after the op, probably a little earlier than I should, but I had used up all my sick pay. I managed okay and, nearly three months post-surgery, feel better than in years. I sometimes get crampy if I need the toilet and can have a lot of wind, but for me, so far, I am so glad I went ahead with the op. I coped barely with the stoma and am very glad I was lucky enough to get rid. I think the reason for the stoma in the first place has an impact upon how people cope and also how they feel about reversal. I can see how someone with years of IBD may feel more freedom with a stoma, but I found it very difficult.

I do not take any meds now, although I may try regular loperamide/Imodium to slow things down and make them less liquid. I also use my trusty hot water bottle if I get crampy and have one at work too. My surgeon is very happy with my recovery, and all biopsies taken during the op were lymphoma-free.

In terms of wounds, my main vertical incision wept a little for a few weeks but is all healed. My wound from the stoma was stapled up but opened a bit, so it was packed regularly and finally healed fully about 8 weeks after the op.

In terms of food, I am a bit careful with high fiber, but apart from that, don't worry too much.

All in all, although the first few weeks were pretty tough, I can honestly say I have no regrets. I have recently ordered my wedding dress for late August, having had to postpone the wedding after my diagnosis, and would never have been able to get that one without the reversal.

I hope this rather long tale helps inform others considering surgery and would be happy to answer any questions.

I would also like to thank the members of the site for their invaluable information and advice over the last two years.

Jun 18, 2013 3:48 am

You are a tiger and good for you. Wish you a happy wedding and a good life.
This is great help to those who might be able to get a reversal.

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Past Member
Jun 26, 2013 8:24 am

Thanks for posting your success story, Sam. May you have a lovely wedding and a long, happy life with your mate. God bless you and the courage you showed.