Experiences with Ostomy Reversal?

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Booters
Feb 11, 2020 5:31 pm

Has anybody had an ostomy reversal and how did it go?

Bagface
Feb 11, 2020 7:07 pm

In July '18, I had emergency surgery for toxic megacolon "of undetermined origin" and woke up with an ileostomy. In February '19, I had a reversal. It was a little tough at first, as I was running to the bathroom 10-12 times a day, and there were some days I felt rotten and fatigued. I was still able to do small tasks, and after 3-4 weeks, I started feeling more normal. The bathroom trips decreased to 5-8 "runs" per day. Now I'm down to 3-5 trips. I can eat pretty much anything I want, but can't overdo on greasy or fatty food, and I eat very little at night.

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britathrt60
Feb 11, 2020 11:30 pm

Hi Booters... I had a J Pouchostomy done due to UC... had a reversal after 6 months... 3 years later, due to problems with the J Pouch, they had to take everything out including the rectum... I have a permanent Ileostomy which I've had for 20 years now. In hindsight, I wish I'd never had the reversal, but quite a few people on this site have had very successful reversals. You will get a lot of help on here.

Good luck in whatever you decide.

Angd

currentsitguy
Feb 12, 2020 1:01 am

Hey! If you look at this forum, you'll see I've been documenting my reversal, which happened on Jan 22nd, and recovery. So far, so good. Surgery was on a Wednesday. My guts started waking up Saturday and let loose on Sunday morning. I moved to soft foods that day and was cut loose on the following Tuesday. My staples came out about two weeks after surgery. I'm still on a low fiber diet, but my bathroom habits have basically stabilized at once or twice first thing in the morning, usually about halfway through the first coffee of the day, and sometimes again about midday. I've been kind of forcing myself before bed, just to make sure I sleep through the night. I'm assuming as my diet approaches something more normal, that things will completely get back to what I was before hand.

Some background: I initially had the colostomy as an emergency procedure due to severe diverticulitis 16 or so months ago. I was supposed to have my reversal at the end of the summer, but my surgeon broke her hand! I chose to wait for her to heal, rather than find another surgeon because I implicitly trusted her, and she was already familiar with my case, since she did the first surgery.

w30bob
Feb 12, 2020 1:42 am

Hi Booters,

You'll probably only be getting a limited number of responses to your question... because the majority of folks that have had successful reversals have no reason to still be on here. So you may find more answers if you search the forum for similar questions asked. Just sayin'.

Regards,

Bob

 

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britathrt60
Feb 12, 2020 2:48 am

Yes, Booters Bob is right. There is a forum on here for reversals. You should get lots of info on it.

Ange

Hermit
Feb 12, 2020 4:09 am

True, mine failed!

lovely
Feb 12, 2020 4:20 am

Hi Booters, I can't tell you anything about a reversal as I was told I cannot have one. But I wish you all the best if you have it done.

Bill
Feb 12, 2020 6:39 am

Hello Booters.

I'm with lovely and Bob on this one as I have not had a reversal and I tend to trawl through past posts to get some idea of what people have to say about it. However, I'm glad you posted, as it keeps the conversation about this subject alive and I hope you get a few more up-to-date replies. Also, as this post will only soon become a past post, it will, no doubt, add to the growth of knowledge on reversals.

Best wishes

Bill

OrlandoNewbie
Feb 12, 2020 6:29 pm

I guess technically, I've had two reversals.

In June 2018, my intestines pretty much exploded with a massive infection. Diverticulitis. I went into the ER doolally and woke up with a colostomy in the ICU, cut from above my waist to my old C-section scar because of all the mess and infection the surgeon had to clean out. In October 2018, I went in for the reversal and got it, but another infection while I was in the hospital awaiting that all-important First Bowel Movement blocked everything up. Another emergency surgery, more slicing through the abdomen, and I woke up with an ileostomy. So, a little bit of experience with each! In late December 2018, the ileostomy was reversed, successfully this time.

I am a 68-year-old woman, still working, and do a decent amount of traveling, much of it to Europe (with and without the colostomy).

I was careful with my diet to begin with, chewing religiously, and had absolutely no problems with digestion, blockages, or cramps. More recently, I have even indulged in popcorn at the movies without incident. I'm a big believer in trying a little bit of what you fancy and chewing it well (as is my surgeon); if you have no problems, hooray for you! And now, over a year after the reversal, I eat whatever I want...and it's mostly healthy ;)

I have several small, soft bowel movements a day. Early on, there were some issues with urgency and I didn't like to stray too far from a known toilet, but that only lasted a few months. I do pass wind way too often, but...I'm also 68. Happily, my hemorrhoids cleared up, presumably due to their six-month vacation.

As far as my intestines are concerned, it was all a rousing success.

However...due to being cut through the abdomen three times in six months and my advanced years, I am still trying to build my muscles up. It took some physio to be able to walk upstairs (the abdominal muscles are, of course, connected to thigh muscles in particular), and I'm still rather entertaining when I get up from sitting or kneeling on the floor. I've got little strength in my abdomen, which means that my back muscles are holding me up on their own, and I get a sore back rather easily. The surgeon said it takes six months to a year for the intestines to heal, so I figured at my age I should err on the longer end before trying to strengthen those stomach muscles. I will admit to some paranoia whenever I get weird twinges with modified sit-ups and such, so I'm not making the progress I should be. I mention all this because it wasn't anything I had considered or expected. Of course, the patient's age, physical condition to start with, and whether the patient had such recent and repeated operations would come into play. It might not be an issue for you.

I knew from the jump that I would probably have a reversal, so my attitude toward the colostomy was probably very different from someone who was looking at this long-term. I am very happy that, even with a few bumps in the road, I was able to have a reversal and have found it to be successful. My surgeon did tell me that more than half the patients eligible for reversals don't have them. He said the statistics didn't include reasons, but the two of us speculated that fear (both of more surgery and of a potential future need for another colostomy), expense, and "the devil you know" might be the most common reasons.

I wish you good luck with your decision and, should you decide to reverse, your healing process. You'll make the best decision for you!

Bill
Feb 12, 2020 6:56 pm

Thank you OrlandoNewbie for your contribution to this post. It has been very informative, interesting and educational. 

Although I am one of those who is not likely to realistically contemplate going down this route, it is so nice to hear about successes with reversals as it reassures us that not everything goes wrong every time. 

Best wishes

Bill 

Raydog
Feb 16, 2020 1:21 am

Hi Booters. I am sure that you must be getting excited by now. I have had my ileostomy for a little over 4 years now. I had my reversal done and was in the hospital a total of 10 days and was released. Five days after I was home, I started getting sick, and 2 days later I was back in the hospital for emergency surgery. I was told that it went black, so all my large bowel was removed. I have been doing well since. I use Hollister 2-piece pouches and flanges, paste on the back side of the flange, and that is all. I change my setup every 6 days. I have not had a blowout for about 6 months now, and am up usually twice a night, and depending on how much, and what I eat, I have sometimes slept right through the night. (Doesn't happen too often, but sure is nice when it does.)

If you choose to have the reversal done, good luck, and I wish you well.