Reversal Surgery Experiences and Advice

Replies
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438
Kimmy050263
Apr 20, 2024 9:53 pm

Hello my Osteomate friends,

I am scheduled for reversal surgery on May 2nd. Has anyone here had the reversal surgery? I have an appointment with my surgeon on Monday, lots of questions to ask, but would like to hear some personal stories from anyone that has been through a reversal surgery.

I had my initial surgery on December 29th, 2023. So just 4 months in. My surgeon always said she thought it would be temporary. I had a few blips, which extended things, but last tests all went well.

I am curious how my bowels are going to work, does the stoma have a play in how the bowels work. I have a one-on-one relationship with my stoma. LOL

I know everyone is different, just so curious how things are going to work.

Thank you my Osteomate friends. This site has been so very helpful as I have traversed this journey that I never expected.

Kim

Beachboy
Apr 21, 2024 12:24 am

Hello,

Your stoma has everything to do with how the bowel will work.

Reversal surgery has 2 parts. 1. Joining the intestine together. 2. Operation of the bowel.

You could develop a leak where the intestine is joined, causing infection. Sometimes it can be fixed with medicine and crossed fingers. If not, more surgery.

Bowel not working properly. This does happen. At first, your bowel and output will be unstable. Over time, bowel movements should become normalized. But this does not always happen.

Reversal surgery can be a "roll of the dice." There is no good way to predict the outcome. Many variables affect it.

I refused reversal surgery. My surgeon told me I could end up with varying levels of incontinence, and the joined intestine could leak, meaning more time in the hospital and possibly more surgery. I was 65 at the time and already had many surgeries and spent long periods of time in the "Big House."

Get as many facts as you can. Think about your personal health. Other people's reversal experiences are good to read, but everyone is unique. You could have perfect reversal success or diminished quality of life from reversal complications.

Tough choice.

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Newhere
Apr 21, 2024 5:10 am

Kim, I had a reversal about 8 months ago. I had a colostomy for about 7 months due to a perforated bowel. It all went well for me, and bowel movements were normal after about 2 to 3 weeks. Healing time was quicker than the first surgery, and now all is good. The main discomfort was at the old stoma site, but it settled down after a while.

DavidK
Apr 21, 2024 9:37 am

Hi Kimmy,

First off, take no notice of Beachboy, he's a lifelong diehard cynic, and there's no way... no how, anybody is going to change that! If there's a way for something to go wrong, he'll find it... lol.

Seriously though, I just had reversal surgery for ulcerative colitis, where I had my large intestine (colon) totally removed and had a J-pouch formed. My surgery went well, TG.

I see from your bio that you have a colostomy, which is far better and easier to perform a reversal, and a good possibility that you will be almost as you were before.

If you have any pressing questions, write them down and bring them with you when you go to see your surgeon. She is best qualified to answer any questions relating to your particular circumstances.

If you have any doubts, then ask your surgeon.

Hope all goes well,

Kind regards,

David

Beachboy
Apr 21, 2024 4:56 pm
Reply to DavidK

Not really, David. I am an optimist. I've survived stage 4 thyroid cancer, prostate cancer, skin cancer, and my latest medical adventure, a colostomy.

Have a nice day!

 
Living with Your Ostomy | Hollister
DexieB
Apr 21, 2024 6:34 pm

Hi Kim, I had a colostomy reversal on Jan 30. It went great, and my bathroom habits were right back on track. I totally understand how there can be hesitation… I think I got PTSD after my botched biopsy that caused my colostomy, and after all I'd been through, I was afraid of complications with the reversal. Plus, I am not a gambler by nature and was well aware of all the things that could go wrong… seems like I'm usually in the 1% of people who get complications with anything I do. But then I thought, what if everything went right this time?

After talking over a list of questions with my surgeon, I decided I was willing to risk it and take a chance. I fully trusted my surgeon, and that was a huge factor. And I was never one who adjusted super well to my colostomy, I think because I never had any issues leading up to it—as in, I know many people's lives are hugely improved by ostomies because they had Crohn's, or whatever the case may be, and an ostomy gave them back their life. For me, I had no issues leading up to it, so I think it was a harder adjustment… of course, there are people who adjust quickly in any circumstance. I am only speaking of my experience. And I had just turned 51 when I got my ostomy… sure, I could die next week, but what if I live 40 more years? So, I saw an opportunity for a return to some normalcy, and I took it. I did not want to always be wondering, what if…

Idk why, but I just had an overwhelming feeling that I should do it. No regrets, just my personal story. I will be thinking of you and sending good vibes!

Kimmy050263
Apr 21, 2024 10:33 pm
Reply to Beachboy

How long did you have the bag when it was suggested? I am about 4 months into this.

Kimmy050263
Apr 21, 2024 10:35 pm
Reply to DavidK

Thank you, David! I do plan to proceed! I have had the best of care since my journey started back in October, waking up Dec 29th with the bag. Surgery is actually on my birthday!

Kimmy050263
Apr 21, 2024 10:41 pm
Reply to DexieB

Hi Dexie!

Wow, kind of similar to what happened to me. It was totally unexpected. I had a hole in my esophagus, they placed a stent that then migrated to my sigmoid colon. They removed the sigmoid colon, but while in there they noticed a nasty polyp on another side of my colon. I woke up about 7 hours after going into surgery. Felt my belly and thought what the heck. LOL

On the plus side, I do feel better than I have felt in a long time and am eating pretty well. I do have some swelling I am concerned about.

I am wondering if my belly will ever look normal again, but not terribly worried about that. I am just not that vain. Have to get over the next hurdle on this journey!

Beachboy
Apr 22, 2024 4:26 am
Reply to Kimmy050263

Hello, I was approximately 6 months post-op. I was really... really... looking forward to getting reversal surgery.

I began researching it at about 3 months living with my colostomy. Read a lot of successful and unsuccessful patient stories. Learned about underlying diseases like Ulcerative Colitis, Crohn's, Cancer and their effect on reversal success and failure. And I learned the difference between ileostomy and colostomy (I had never paid attention to the difference before).

Then I thought about why I had to get a colostomy. My age, current general health, hospital, and surgeon. I tend to always research a lot and I'm conservative by nature and experience.

In the end, I chose to keep my colostomy. Why? I've had many different major surgeries over 40+ years. Cancers, chemotherapy, different radiation therapies. Unlike those previous surgeries that saved my life or improved it, reversal surgery was different. It wasn't like the successful surgery that created my colostomy... there was the possibility reversal would not work. So, how badly did I need and want to get rid of the bag? My wife doesn't care that I have it. My colostomy is easy to take care of. I'm older... don't surf anymore. Have a big bump under my shirt, but... so what. I'm fortunate and lucky. And God was with me.

So, I declined reversal. And you know, I'm happier now. It's been decided. I don't look back.

I've been criticized and belittled for my thoughts about reversal on this website. I do not tell anyone what to do... I advise that reversal is major surgery. Get as many facts as you can. Question your surgeon; how many reversals have they performed? What's their success rate? How does underlying disease affect reversal? Read patient stories and hopefully one of them is like your medical situation and you can relate to it.

Most folks dislike the bag, but are thankful for it allowing a return to a somewhat normal life. And that's the lure of reversal... getting back to normal.

The kind and generous people on this website taught me how to care for my colostomy. I must say, I was pretty lost for months after my surgery. But now... it's all a piece of cake.

Good luck and take care.

DexieB
Apr 22, 2024 2:01 pm
Reply to Kimmy050263

Yes, that is a similar story to mine! They also removed my whole sigmoid colon. Good thing they found your polyp while they were in there! I was also surprised to wake up with an ostomy. I never really had any problems with the ostomy... some skin irritation here and there. The biggest issue for me was the hernia I had under it.

My surgeon was confident that I was a good candidate for reversal while also letting me know the things that could go wrong - but things can go wrong with anything in life! We went over my big list of questions to help me decide if it was the right thing for me. He had saved my life once already, in the direst of circumstances - so I figured a planned surgery would be even safer. All of the colorectal staff that came to see me during my 21-day hospital stay told me the reversal would be easier in my case because I wouldn't be going into it with sepsis and it would be laparoscopic vs. open surgery. And they were right, it was much easier. This is not to say it was without pain - of course, there is pain with any surgery. But it was totally worth it for me.

Yeah, I don't think my belly will ever be the same again - but like you, really not worried about that... more worried about just getting on with healing. As I said in the hospital, guess my modeling days are over! HAHA, the nurse got a good laugh (when you're there for as long as I was, you have to try to find some humor or you'll get depressed!).

Sounds like your decision is made, so I wish you the best. Bring some Desitin to the hospital (or some other barrier cream), because you will probably go a lot the first few days as your body adjusts. My stomach made some crazy sounds! I wore some Depends for a few days just in case. But I was shocked at how quickly I got back on track. My old stoma had to heal from the inside out, so that took 6-7 weeks. Wound care was minimal - I just had to throw a new bandage on it each day (the smaller incisions were glued). I still feel a bit tired and sore, but I think the soreness is really my sleeping position... I used to be a side sleeper, and then I had to learn how to sleep on my back - I still struggle with it, but I don't feel comfortable enough to go back to side sleeping just yet.

One complication I did develop is an incisional hernia after surgery - because my husband had been sick, I caught a virus. I tried in vain not to cough, but even the meds couldn't suppress it. A cough from a medication is also what caused the parastomal hernia I had (that was fixed during reversal surgery) - so it was just bad luck with coughing for me. Due to the fact that I have had 3 abdominal surgeries (gallbladder just before all this), my abdominal wall is extra weak. I knew there was a chance of this complication happening - still not sorry I did the reversal. I see a surgeon at the end of June about the hernia - I'll see what he says and then decide if another surgery is in the future for me. So... do NOT cough after surgery :) Do whatever you can to avoid getting sick!

Best of luck!

DavidK
Apr 23, 2024 5:39 am
Reply to Beachboy

That's good to hear, Beachboy. It's not easy keeping the sunny side out given all you've been through, but you can do it!

amymariefred
Apr 26, 2024 9:19 pm

Here's my personal experience:

I'm 47 and was diagnosed in Aug 2023 after a routine colonoscopy. Stage 1 for me, so no chemo or radiation. I waited 5.5 months for my reversal. I'm now 6 weeks post-op. Pros: no more stoma, fear of blowouts or leaks overnight or in public (again, my personal issues), a partner who is constantly worried he will hurt me or that I'm fragile, worrying about my inability to work as efficiently or effectively at my job and the fear associated with it (I work with middle schoolers who don't use verbal communication and don't understand that pushing me in the stomach is really scary), anxiety about the next steps, etc.

Challenges: having accidents and wearing Depends for 2 weeks, frequent bowel movements (still an issue), long sits on the toilet, urgency, sharts (take water-soluble fiber ASAP three times a day to help this), hemorrhoids, ointment to prevent/heal them (but way less bathroom hygiene than with an ostomy). It's getting better over time, and I hope it will continue on that trajectory. I read a lot on LARS after reversal, and some people have more and worse symptoms depending on the location of the resection. The more sigmoid and rectum they remove, it seems, the more symptoms.

My doctor said to be prepared to have your first accident in your hospital bed. Unfortunately, she was correct, but only because I called for help 3 times to get to the toilet and they were busy. Ask for a commode by your bed (I was too wobbly to get to the bathroom by myself with a walker).

I wish you the best.