Seeking Advice - To Reverse or Not? Stoma Reversal Decision

Hi, I had emergency surgery on February 14th last year for a serious bowel obstruction. I am now living with Crohn's, which is very manageable. I am able to have a reversal. I know this sounds bizarre probably, but with having IBS for so many years and suffering with cramps, vomiting episodes and running to the bathroom, my life is actually so much better since having my colostomy. I definitely would not have ever thought I would say that! When people ask me when I'm having my reversal or made up my mind about it, I'm fighting within myself to tell them that I'm thinking of keeping it. I also feel bad, that there are people out there that don't have the option to have a reversal and I do. I'm so back and forth with this and I keep thinking that people think I'm weak for possibly not having a reversal. Also, the thought of another surgery scares the hell out of me. Any advice? Thanks, Deanne

Hi Deanne, I understand your fear but I have had Crohn's disease for 41 years. Just do really good research on your surgeon. I myself have a temporary colostomy now, but I am supposed to go for a reversal in April. I would not keep this bag on me for any reason. Twice in the last three months, the medical supply office screwed up my bag order. Like, how can you go without bags!!! I did have surgery in 1995 and had remission until 2010. I know you are lucky to have universal health care in Canada, but here in the states these cost a fortune. I vote for the reversal.

I am not an advocate of these surgeries (stomas, getting one or keeping one). But I do agree with the term: if it's not broke, don't fix it. If you are happier with the thing and are fine in your mind having it, then why mess with things? The reversals can be just as hard to recover from as the stoma surgery. Do not do anything for anyone else, do what you really want to do. It's your body.

I chose not to have a reversal after reading very sobering statistics about the success of such surgery. It's one thing having it put in when the alternative is death, but another thing to volunteer for such major surgery when it isn't essential! This year I've had two friends have reversals because they simply couldn't cope with the emotional and practical impact of having a stoma. The older one has done well after the surgery: the younger one (65) never recovered, and after months in and out of hospital died before Christmas. I'm still convinced I made the right decision, but we are all different.

Thanks for your comments. It sure helps getting advice from people who are in your situation. ChrisP, I'm wondering if you don't mind me asking how your wife felt about your decision to not get a reversal. My husband is of the opinion that because he hasn't seen me this healthy in a long time, he thinks I should leave well enough alone.

Words of Encouragement from Ostomy Advocates I Hollister

My wife felt much the same, I think. I shared with her the statistics about the risks, and her view was that having nearly lost me once, she saw no point in risking that for a second time. Although the cancer was a more recent factor, the stoma gave me relief from problems I had had a lot longer, so yes - I was more comfortable and in better health than I had been for years. Hope that helps!

Hi, I've only just joined this site. My sister has Crohn's for 29 years. 13 years ago, she had a part of her bowel removed but begged not to have a stoma (which she got away with). Then, 5 years ago, she was told she needed a liver transplant (due to her Crohn's). With the help of her consultants, they managed to get her nearly 5 years on, and in Feb 2014, she was taken into our local hospital for 3 1/2 weeks as she became very ill and was only weeks away from death. Then, after being home for 3 days, she got the dreaded call to say she was to go to the liver transplant hospital. She underwent a 13-hour op for her liver transplant. All went well the first 2 weeks, then everything that could go wrong did. She spent most of the past 10 months in ICU, and on 2 October 2014, she had another bowel op. When the professor opened her up, he couldn't do what he was hoping to do. So, after a 6 1/2-hour op, all he could do was stretch and try to untangle her mushed up bowel. My sister was horrified once she knew what she has got, but as we say to her, she is alive and had no choice but to have a coloscopy. She has been told it can never be reversed as the professor will never open her up again. I've been taught how to clean and change her stoma, which I'm quite happy doing, but she really needs to try and do it herself as we know it will not be reversed. This is going to be a very tough time for her, and the more I can understand about stomas, the more I can be there for her. Any help is much appreciated. Thank you xx

Hi Karla, you are being a hero for your sister, just as my wife was a hero for me. I knew what to do, but it took me a while to summon up the courage to do it. But of course, the day came when disaster struck while she wasn't around, and I just had to get on with it. Keep encouraging her - there are lots of us out here leading perfectly normal lives!

Hi Karla, I know it is terrifying to find out that you have a colostomy. ChrisP is right, you are a hero for your sister as Chris's wife was a hero for him and my husband is a hero for me. I couldn't even stand to look at my stoma at first, and now that I'm much healthier with my colostomy, I call it 'my little buddy'. The best way to deal with a colostomy is to start doing it for yourself, cleaning it, changing it, etc. There's nothing wrong with helping, but your sister needs to start doing it for herself. That's a big first step. Hope this helps!

Hi Deanne. I have had the stoma, reversal, and back to stoma. When I first lost my bowel due to Ulcerative Colitis, I couldn't stand looking at the stoma and wanted the reversal in the worst way. I thought dating would be easier. Ha. I had the reversal. Here are the cons...you need a rash ointment for your bottom because the stool is still liquidy. You may wake up at night and see that you have had an accident, and sometimes you just can't help having some leakage. I also had a terrible fistula, and nothing could be done with it. The fistula went from my bottom to my vagina...in other words, waste was coming out of my vagina. My Dr suggested I go back to the stoma so the fistula could heal, and we would do the reversal when all has cleared up. Long story short...the fistula cleared up, and I opted to keep the stoma for a couple of months to see how I got along with the bag, etc. I got along fine. I haven't had any more surgeries for two years. I feel great. The bag is no big thing (it was at first). I wear anything, I eat anything, I am careful in the heat, and I have had embarrassing leakage, but in the long run, life is okay with a stoma and bag. I don't know how old you are, but I am in my 50s and have had quite a journey (as I am sure all of us have). I am glad I did the reversal because I knew that I had tried everything to avoid a bag, but I have gotten so used to it I don't worry too much about it. It is always with me, but I am okay with it. Sounds like you are okay with the bag as well. Avoiding surgery is always a plus. I hope I make some kind of sense? You have to make up your own mind, and neither way is wrong. But if it ain't broke, why fix it? I wish you the best. Take care...

Hey all!

I am super late to this thread but wanted to know if DeanneCanadianGirl chose to reverse. I see myself in her post and wonder if the reversal is worth having.

Unlike others who responded, I didn't struggle at all with the idea of having to deal with my stoma. I was utterly fascinated and wanted to know everything. I wanted to do all of the care myself and don't mind the day-to-day care at all. I worry about the prospect of being alone and unloved because of it, but that is the only thing that makes me sad about having a stoma.

If there is anyone still reading this, please respond.

Hi Southpaw.  I have no business replying to this post except I never communicated with a jazz singing, vamp bassist, upright or electric.  The bass, that is. You're certainly unique and you'll most probably do the right thing for yourself.  I don't think you should ever worry about being alone and/or unloved.  I think lots of folks would treasure your company.

Sincerely,

Mike

Hi Southpaw,

Anytime anyone posts to a thread, old or new, it gets noticed, and that, in my opinion, is a good thing. As far as a reversal, I can't have one and am okay with that. As far as the prospect of being alone and unloved because of it, I can't imagine the sadness I would have for knowing I chose someone so superficial to begin with if they didn't love me anymore because of a stoma.

Life is not easy for most folks for many reasons, but a stoma is manageable.

Right on!!! Thank you very much, Mrs. A., for both responding and making a ridiculously powerful point!

iMacG5,

Thank you for responding - and with such kind and witty words! I'm glad I asked...

Hi Southpawbass, when I had my surgery for UC, I told the physician that I was not interested in a J-pouch. I read so much literature about the pouch and the failure rate that I decided it was not an option for me. I am glad that I made that choice because going to the bathroom 10 times per day would be just like having UC - no change. Managing the pouch and stoma is different and if I had a choice, my choice would have been to get well. I can't comment on dating because I am married and it was my husband who convinced me to have the surgery. He had just lost his father when I became ill and he did not want to lose me too. I was determined not to have the surgery and wait for a miracle cure until I saw the sadness in his eyes of how really sick I was. March is my stoma's birthday - I named him Stanley. I am here, taking it one day at a time. And, I am happy that I am still here to capture each day. Life is pretty good with Stanley. LH