Reversal after 9 Years: Seeking Advice and Experiences


I am very nervous as I'm four weeks away from having my reversal. I had to have a stoma in 2003 as I had an undiagnosed illness, but after my op improved and lived a happy life except for dealing with the normal day-to-day of stoma bags, etc. I am 43 and have wanted for so long to have my old body back and lead a normal life without the stoma! It affects me in lots of ways - my confidence and self-esteem. I have been told by two surgeons that I am fitter now than I ever was and should be okay to go ahead with the reversal. I'm so happy but at the same time scared as it's been 9 years with a stoma now..

Is there anyone who can advise me or had a similar story to share and what they experienced after the reversal? I know the risks are infections, etc. but feel if it's possible to get my life back, it is worth going through with it.

I am fit and healthy but recently found I have an incisional hernia on an opposite scar from my previous surgery but have been told it may well be possible to repair it when I have my op. I will discuss this with them on my pre-op date on the 8th of Nov..!

Would appreciate if anyone can share their experiences with me.

Thanks all, Sara
Past Member
Hi Sara,

I read your post and it sounds like you have the best chances of coming through your surgery very well if you are otherwise fit and well.

I would love to be four weeks away from reversal but have to wait until spring 2014. I've read elsewhere that we only tend to read about the reversals that don't go so well as those are the people that are looking for answers and support from others when things don't go so well and there may be very good reasons why that occurs that don't apply to you.

The people whose reversal goes well tend to get on with their lives, rather than write posts about it. You are 9 years on, disease-free and healthy. It's natural to feel nervous about any surgery but try not to think of the worst possible outcomes, that will make you anxious - and after all, just because you're able to think it, doesn't mean it will happen. Instead, look forward to the positives, prepare in advance for your recovery period as best you can and look forward to your future!

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Hi Paleo,

Thank you for your reply. Yes, I know what you mean. I tend to read posts from others who maybe don't go so well, unfortunately for them. I know I'm ready for this as I've been wanting this for such a long time. Just that now it's getting nearer, I can't help but think, "OMG, is it really happening?" I'm excited, scared, and yes, a little anxious, but trying hard to focus on the positives. I know it's the right thing for me and I have the support of good friends and family. So, I'm looking forward to the new me and fingers and toes crossed, it will all be fine. If I don't do this, then I will never know. I'm fit and well, and the doctors all think it's okay to go ahead too. So, I'm in their capable hands now.

And hey, spring next year for yours may seem like a lifetime away, but I'm sure it will pass by quicker than you think. I have waited for 16 months for my opp date. It seemed like a long wait, but it will be worth it, I'm sure.



My best advice for anyone about to have the reversal is to be sure to take some adult diapers to the hospital with you. The first few days, you will have little or no warning! The diapers available at many hospitals are horrible. Get some at the grocery store or drug store and be prepared.


Hi, okay. Thanks. I will do it. Yes, I have been told that might happen. Thank you...

Words of Encouragement from Ostomy Advocates I Hollister
Hello there

Having had what I consider to be a positive reversal, I thought I would tell you about my experience. You can find some positive stories about it on here but not enough.

I had my ileostomy reversed at the end of March this year, almost two years to the day after I had the ileostomy during emergency surgery for complications caused by an abdominal lymphoma.

I needed about half my colon removed, including the caecum (where the large and small intestine join), due to damage by lymphoma. Although they weren't sure if they could do that and reverse in one op, I woke to find out they had and was thrilled.

Post-op, the first few days I felt great - I realize now it was a lot to do with the drugs I was on. I had an epidural prior to surgery for pain relief post-surgery and had a button to release the drugs when I wanted.

After a day or so, I think, I was allowed to eat a little and was okay at first. A little bowel movement, but I used to occasionally pass a little stool prior to reversal and think now that it may have been content already in the bowel.

After about four days, I was vomiting anything I ate and so went almost nil by mouth as it seemed my bowel was not getting going - an ileus, I think. I was told it is common due to the shock to the bowel and should pass after a few days. I was terrified as I had been so pleased they'd managed to reverse and thought I would need a stoma again.

I also had a pocket of infected fluid in the abdomen and was in a lot of pain from that, so they put a drain in and after lots of foul stuff came out, I felt much better. The drain was in a couple of weeks or so in the end. I also had a Nasogastric tube to drain fluid collecting in my stomach. I didn't eat or have any food supplements for a couple of weeks and just as they were planning on adding some, about three weeks after surgery I think, although a bit of a blur now, my bowel finally started to get going.

By the way, get used to being asked ALL the time if you have passed wind!!

I started to eat again, slowly, and started to have some bowel movements and pass wind. Very weird after so long and was scared when I felt the need to pass wind in case of an accident! Couldn't really distinguish which I needed to do.

Bowel movements were very watery at first but did manage to get to the toilet in time. Luckily I had my own room with an en suite.

After a few days of that, I was allowed home for the day on Saturday and Sunday and managed okay but perhaps got carried away and ate a little too much. Lots more frequent bowel movements when I returned and still rather loose. Finally discharged four weeks after op although felt a bit sick on discharge day.

First week home, I could hardly eat and was constantly back and forth to the toilet passing liquid and lots of it every half hour at least. This went on for everlasting days and they decided I had an abdominal bug. A few accidents over that period but my toilet is downstairs so not a big surprise there. I had a few moments of regret at this point but persevered.

Things improved and I learned more and more what to eat and what not to. I was very careful when I went out as I would find that the urge to go would come on quickly and as my movements were quite liquid (mostly I think because half my colon was gone), I couldn't hold it very long.

Initially, I was going I think every couple of hours, always pretty loose, but this has lessened. I returned to work 8 weeks post-op (probably a little early but used up all holidays and sick pay and still covering from a year off sick).

I worked as a solicitor in a small office where we know each other very well so they knew that I may have to dash to the toilet.

Six months on, things have improved over time.

Now I go once in the morning, usually within half an hour of getting up. This is the most like normal but still a bit loose. I tend to need to go after I eat so go at lunchtime and an hour or so after dinner. In between meals, I probably go about once but this seems to be more mucus than stool, although it is worse to pass as more cramps. I have less urgency now most of the time and a little cramping which is a warning sign to go to the bathroom.

Fiber makes me have to go more often, quite quickly after eating. Tried bananas, for example, and passed it within half an hour. I avoid whole wheat and roughage but go for soluble fiber like oats in small doses.

I eat veg, fruit, and salad but limit the raw veg and fruit when out and about as it can pass more quickly. Apart from that, my diet is normal.

Occasionally I have to get up to use the toilet at night, maybe once a week.

I do not take any meds but have been prescribed loperamide to slow things down. This does work and I have used it but find I get bloated so use only if I am going out in the evening. When I take it, I don't need to go to the bathroom for the whole evening. Can get Imodium plus which does help with bloating too.

I got married in August and dosed up on loads of loperamide and was fine all day (no bowel movements after about 11.30 am), although like a balloon the next day. Worth it though! Couldn't have had my chosen dress with a stoma, that's for sure.

Part of my bowel habits may also be due to a rather large incisional hernia from just below my right breast to my waist which I hope to have fixed next year. If you are having a full incision, don't lift anything or exert yourself for longer than you think. My hernia developed about four months post-op.

All in all, I am much happier now as although I managed with the stoma, leakage and fear of leakage were constant issues.

I am quite windy at times and tend to go to the toilet rather than pass wind in case of an accident, more out of caution as I can tell the difference easily now.

I have a hot water bottle at home and work for comfort and to ease cramps.

I get occasional soreness of the skin on my bottom as my movements are quite loose at times but a little Sudocrem is all I use maybe once a fortnight.

I could have even fewer movements if I took regular loperamide but choose not to as my environment is such that if I need to go, I can.

There is a little more planning about when to eat if you are out and about but that was the same with the ileostomy.

I hope my rather long reply helps even a little. I am still improving week to week and expect the hernia op may help but definitely worth it for me. I suppose it depends on how you adapt to the stoma as it is clear some adapt or cope better than others. Perhaps that depends on how you were before the stoma in terms of bowel habits. I managed but there was never any question of not trying reversal if I could and am so glad I did.

Best of luck to you.

It is true that you will never hear the success stories, but I have a special place in my heart and will never forget my "former ostomates". I cruise by this site when I have time and try to make a positive difference. If a reversal is possible and quality of life chances are 50% or better, then go for it ....PERIOD. I am glad I did. Life is beautiful and short. Enjoy!!!



Hi Skelly, I am a success story. I had a colostomy after a bowel perforation, then had a reversal after one year. The reversal was much easier than the colostomy. Yours will be too because you are young and healthy! They will not send you home until you pass wind, that is usually first, then some kind of a stool. The early ones will be loose, mucousy and stringy. Remember, your rear plumbing has been out of service for a long time, and your brain has to remember how to send the right signals to your bottom! Over time, they will get more normal, less mucus, and firmer, depending on what parts of your intestines you originally had removed. Give your body time to heal. If they say don't lift anything over five pounds for six weeks, don't do it for eight. You don't want a hernia after all the hard work you have been doing to get your body in shape. Eat small amounts of new food to see how your body takes it. Eliminate what gives you problems for a while, eating what keeps your stools well formed. Give it time! I can't wait to hear your success story! Beaner

Hi Tigerlily,

Thank you so much for your message. It has helped me a great deal and eased my mind. I have about 12 days to go now before op day. I feel very nervous but know it's what I want. I have wanted this for so long. All you told me was reassuring and I'm glad you are improving. Now I have spoken to one or two, but your mail was the most helpful. So, I really did appreciate you taking the time to reply. I'm sure there are lots of people out there waiting and wondering if it's going to be okay. I know it's not always the case, but I'm happy to take that chance. My mind is so focused on this and it feels like a lifetime away still, and only 12 days to go. I'm counting the days.

I will keep you posted on my outcome, and I agree positive stories are great to hear. So, thanks again.

Take care, Sara.

Hi Beaner

Thanks for your success story too. It's so good to hear from you all. It's rather nerve-racking waiting for this op, but sure it's the right choice for me. I will keep you all posted. Hopefully, I can report a success story too..

Take care, Sara..!


I am also a success story!! I had my reversal in Feb 2012. Two phases... A few surgical complications, but overall success. I am very happy with my decision and would heartily encourage the same for anyone else.

Well, my op was a huge success. I had the op 18 days ago and, to be honest, I feel great. I was in the hospital for 10 days, but only because my tum took its time to wake up. But it did eventually, and the doctors were happy for me to come home. I've been getting stronger every day and eating anything I want to, but little and often. Things have slowed down now. I seem to be going to the loo twice a day at the moment, and everything is working normally. No accidents either! I think eating a banana a day has helped slow things a little. Oh, and the odd marshmallow. Yum! But on the whole, I'm so glad I did it. It feels fantastic to be free of the bag. I'm moving about really well now too, and every day I do a bit more. I feel it was well worth it, and I'm so happy it's all over. I can now start my new life minus my bag!

So folks, to all of you wondering if you're doing the right thing, then I say if your doctor says you're a good candidate, then I would strongly advise going for it. It's been great for me, and that's only after 18 days. So good luck to you all, and just to say, it's worth it. There are lots of people who have had success, and I'm now one of them. Yayyyy!

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