Seeking Advice on Colostomy Reversal Recovery and Experiences

There is a good chance that my colostomy can be reversed. A bit of history: colostomy surgery as a result of diverticulosis in April 2021. Conversation with the surgeon prior to surgery was basically a graphic of what the surgery would entail and also a reconnection if possible.
As I had a colostomy post-surgery, obviously the team was unable to reconnect. Since then, there has never been any discussion of a reversal.

I have developed a large hernia surrounding my stoma. It is about the size of a large grapefruit. In September 2021, the surgeon submitted my name to the local hernia clinic for a consult. COVID didn't allow that to happen until recently. Following my CT scan, I met with a different surgeon regarding my decision to have the major hernia surgery or not. That evening, I received a phone call from the surgeon who asked if I had ever contemplated having reversal surgery. I said no as it was never presented as an option. She was of the opinion that it could be. One more test scheduled.

To get to the point of this message, I would like to know what the recovery from a reversal has been for others. I have spoken to one woman who shared that she wasn't back to "normal" for about a year. She always had to be mindful of where a bathroom was located nearby, experienced accidents, loose stools, and the texture of the stools never returned to what they were prior to surgery. Hardly a positive reply.

I am 76 years old, live alone, and am fairly active attending fitness classes Monday to Friday. These classes also provide my social contact which I would be reluctant to give up due to a lengthy recovery.

I am seeking advice/experience from those who have had a reversal; how long in respite before being able to cope alone and any other helpful information.

Thank you in advance to those who will share their experience.

I'm sorry, I can't answer your question as I am only 5 odd months in. I have developed 3 hernias the same size: 1 under the stoma and 2 on the right of my scar. I have been told it is a tricky operation and about 7 hours, and I will have to have the stoma repositioned. I would love to hear thoughts on this as well.

I had a proctectomy (rectum removal) due to cancer, then an ileostomy while I healed. It's been over 10 years since the reversal and I'm still not "normal." I need to watch what I eat, when I need to be near a restroom, etc. It leaves me with specific hours when I can enjoy hiking, kayaking, and other activities. I am looking into a Sacral Nerve Stimulation device to control things. I sometimes wonder if I would've been better with an ostomy.

Hi Lyndaj, I had a colostomy reversal about 4 months ago now. I was back to normal within a month. I only had the stoma for just over 7 months, so that may have worked in my favor. Healing took its time, and I'm still in the process of healing. You will need help with cleaning, cooking, etc. From what I can work out, people who still have their rectum and a reasonable amount of colon left seem to fare much better with reversal. Bill.

Hello, I had a reversal too and it was done robotically. My recovery was easier than the initial surgery. I posted a detailed breakdown of that process (initial surgery and reversal). Hopefully, it's still available under my name. Good luck with your decision and progress. We'll be thinking of you. John.

Words of Encouragement from Ostomy Advocates I Hollister

I'm going in Friday for my reversal after 7 months. No special circumstances with my colostomy, so I'm hoping for a relatively easy recovery.

I commend all of you that have had to contend with the pouch for a long time. It was rough on me.

Thanks so much for your honesty. It makes a big difference!

I will be having my colostomy reversal Jan 30, 2024 - got it on May 28, 2023. I wish you the best of luck with your reversal and I hope you will keep us posted!

Thanks, Dexie. Had it done Friday and still in the hospital this fine Sunday morning. Been rough so far, but I'm getting there. Will probably be discharged tomorrow.

Hi. I have my colostomy reversal scheduled for 31st Jan 2024!

I got mine in March 2023. So we will be on the same path within a day of each other.

 

Good luck for the 30th! Didn't it seem like a long wait!

Cheers, Rob.

Oh my gosh, yes we are on the same path. And YES - it has seemed like a very long wait! Good luck to you as well, Rob!

Thank you all for your input. As I am so used to my colostomy after almost 3 years, I am of a mind not to go through a reversal surgery. What has been the most helpful has been the use of flushable liners which are inserted into the colostomy bag. When required, remove from colostomy bag, flush down the toilet, and insert a fresh one. Not suitable for septic tanks. No fuss, no muss. Again, thank you for your input.

Today is one week since my reversal surgery. I was discharged late Monday morning after finally having my first bowel movement. Constipation set in on Sunday, 2 days ago, so I took a shot of Miralax. Today I'm feeling pretty good in that respect, but boy am I feeling tired. Other than the constipation issue, the staples on the stoma closure give me an occasional burning/stinging discomfort. Going tomorrow to have them removed.

So overall, this experience has not been too bad, and I am really glad to not have to deal with the bag.

I'll say it again... I commend you all for successfully dealing with the bag.

Hey there, I am so glad you are doing well! I was told my stoma site will not be closed - it will have to heal from the inside out. Maybe every surgeon does it differently? I am really happy to hear it is going well for you - thanks for updating us!

Hmmm, the way my surgeon did it seems like the way to go, but yes, I was told it heals from the inside out; but as I said, she used the staples to close it.

Anyway, pretty much all last night the closure area had pretty bad stinging/itching, so not much sleep. I was told to put an ice pack on it, and after going through the discomfort (duh, why didn't I think of it sooner) until 5 AM, I got the ice pack, and it did make a difference.

Today, day 13 after the closure, the site is feeling pretty good, no stinging, no pain, but ohhhh boy, the constipation.

 

Oh boy, sounds rough... I am very worried about constipation! My surgeon told me it can take up to 3 months to get regular again with bathroom habits. He told me the stoma site should be about 80% healed after 2 weeks, and I won't have to do much in the way of wound care. I hope you are continuing to recover well and that you feel better soon!

I have an appointment with a gastro surgeon to determine whether or not my stoma and parastomal hernia can be reversed and the hernia repaired. I had several perforated diverticulitis pockets while undergoing chemotherapy treatment for TNBC breast cancer, which resulted in a double mastectomy. I went septic from the perforations into my abdominal cavity. Because I was undergoing active chemo, I was originally told that reversal probably wouldn't work due to chemo attacking fast-growing cancer cells, hair cells, and newly formed cells trying to repair the bowel resection. I'm hoping (probably against hope) that the surgeon is willing to try to reverse and repair my stoma/hernia, but time will tell.

 

Oh my goodness, Pam. Hope everything goes well for you.

Had my final appointment with the surgeon, and I will not be having hernia surgery. I had already made the decision not to have a colostomy reversal a short time ago. Given that I have no pain nor colostomy leakage due to my hernia, she recommended against such major surgery. I am booked for another appointment in a year, but should I experience problems in the meantime, she is available to see me. Due to Covid, they will always be two years behind; however, given that I have been in the system since 2021, I will not have to wait for a lengthy period of time. This is reassuring given that my first wait was over 2 years.

Thank you all for your feedback.

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