Reversal After 3 Years: Recovery Experiences?

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1189
mcp
Jan 15, 2023 10:38 pm

I recently saw my doctor regarding a reversal after 3 years. He said that I can have it anytime, of course after I do some preparation. I have been reading horror stories about recovery after the reversal. Does anyone have a similar experience?

Justbreathe
Jan 15, 2023 11:20 pm

I had surgery 2-1/2 years ago (ileostomy) and have been told I can have a reversal - my enthusiasm for reversal dwindled after several setbacks and time marched on. The longer I have it, the more information I have gathered - frankly, I'd like to go back to my "ignorance is bliss" days. For now, I have decided against reversal. I do have a peristomal hernia, which I have been told is quite common and not painful. I have come to accept this new normal for now. I totally understand the concerns you may have and hope you will find the answers you need to make your decision. Best wishes - jb

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Deeleigh
Jan 16, 2023 5:03 am

I had a colostomy for a couple of years and decided to have it reversed. For me, the reversal was less painful to deal with than the ostomy itself. Now, I went another 20 years miserable with issues and finally went to my surgeon and said I'm ready to take it all out lol. He couldn't believe I waited so long. I had my colon removed and an ileostomy. Ask yourself why you have it? What about it makes your life better from having a colostomy? We all have them for different reasons. I lost bowel control after having a 10 lb baby and 4th degree lacerations in my sphincter. Over the years with pain meds, I developed slow motility and IBD. I was having blockages 3-5 times a month. If you feel you can reverse with no issues, best of luck to you! We will support you either way.

Bill
Jan 16, 2023 7:28 am

Hello mcp.
A few years back, my surgeon offered me a reversal. I was quite bemused at this suggestion and asked him if the original reasons for my colostomy had somehow gone away.

His answer was 'NO', so there you have it. 
I did not pursue the conversation any further, but have often pondered on possible reasons why he would make the suggestion. None of my contemplations reflected on him in a positive light! 
Best wishes

Bill

Charleston man
Jan 16, 2023 10:41 am

Hi mcp.
Some 12 years ago, I was asked by my nurse at the surgeon's office if I would consider having a reversal. My answer then was, "I'm quite comfortable with my ileostomy as the pain and suffering I went through with the UC. Why would I take the chance of going through such agony again? I would rather see what's happening than feel what's happening." Just my thoughts.
Charleston man

 
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TerryLT
Jan 16, 2023 10:24 pm

Hi Mcp, I see you have an ileostomy, so you should be aware that your chances of a successful reversal are lower than if you had a colostomy. I also have an ileo, and was given the option of having a reversal, but after doing my research, I've decided to stay with what I have. My quality of life is good and my ileo does not prevent me from doing any of the things in life that are important to me. There are a lot of horror stories, as you said. One thing to think about is that with an ileostomy, your output is very caustic, and as we all well know, can cause major skin irritation. Imagine what it would be like if that caustic output was coming directly out of your anus, onto the sensitive skin all around your anus. I've read about people with terrible chronic skin problems from this, painful, raw skin and no real solution.

Terry

elledubuque
Jan 17, 2023 12:21 am

I'm finally getting to a semi-good state after a colostomy reversal on 11/16. I posted in the dedicated part of the forum for reversals. Check them out for how it went. I only had my colostomy for 6 months, and it was because a resection for a mass they found ended up leaking infection, but they caught it before sepsis, so win there.

I'm doing pretty good now, it's just a battle with understanding output while my bowels start to learn to function normally again. Certain foods are a no-go, eating before a big day out is a no-go, but each day it gets a little better.

The biggest thing these days is dealing with hemorrhoids because of all the time you spend on the toilet. I should have likely been slathering on Preparation H in anticipation of this happening, but live and learn.

I think other folks on here are right about if the symptom that caused the need for the ostomy is solved, go for it. I did not have any IBS-type issues, so going back made sense once I was fully healed from my second surgery.

Justbreathe
Jan 17, 2023 1:14 am

Thanks for the update. Happy to hear you are improving. I am wondering if there is a big difference between a colostomy reversal and an ileostomy reversal? This is probably a stupid question and I usually Google these things. I'll check it out tomorrow morning when I am more bright-eyed and bushy-tailed. Anyway, just wanted to say thanks for posting as I believe these types of posts help those trying to make decisions about reversal if it's an option. jb

Xndman
Jan 17, 2023 11:21 am

I had colon cancer at 21, had part of my colon taken out and resected, then chemo and the shotgun radiation they used back in the early 90's. Had annual colonoscopies and starting having more and more polyps taken out. Two years ago with the help of a geneticist we decided based on me having Lynch syndrome to have my colon removed. My amazing surgeon took out my colon and hooked up my small intestine to what was left of my radiation-damaged rectum (about half) thanks to my surgery when I was 21. She connected the small intestine to the side of my rectum to create a bit of a reservoir. I lived with the ileostomy for 7 months and hated every minute of it. I particularly couldn't get used to the lack of control and the constant worry the bag would disconnect during work, when I was away from home, etc. The output was typical for an ileostomy so very liquid and a lot in volume. Had the reversal in May '21 and as most have said, it's been challenging, particularly at first. Watery output, going a lot, butt pain, accidents, the whole shebang. But, as time goes on, while I still go a lot (like 10x a day), the output has improved significantly, the butt pain brought on by watery stools has become rare (say 2x a month now), and I have excellent control. Never have accidents outside the house and even at night I haven't had one for months. I've gone out to eat at restaurants several times and can go to bars and drink some. Now drinking does make the output more unpredictable, but even that has gotten better over time. I take Metamucil and Imodium 2x a day routinely and have Lomotil for those times when it's super liquid.

So I seem to be the rare occurrence of someone without a colon who's been re-connected and can lead a pretty normal life other than having to use the potty every couple of hours. I have control over when I go and when I don't go, although sometimes I need to get to a potty within say a half hour, and I don't have to mess with an ileostomy anymore, which really jacked up my skin. I would get reversed again in a heartbeat.

Best of luck to you and whatever decision you make.

Xndman
Jan 17, 2023 11:24 am
Reply to Justbreathe

Yes, huge difference. Having any colon left at all greatly improves your return to "normal" since stool can work its way through the colon and have most liquids removed, which greatly improves stool consistency, control, and how often you need to go. With no colon, like me, basically the volume you eat and drink is what comes out the other end. Much less liquid is removed, but I've found the small intestine has gotten better over time at removing some liquid and producing semi-normal looking stools.

Justbreathe
Jan 17, 2023 12:28 pm
Reply to Xndman

Thanks for your response. I guess I should spend less time on silly stuff and educate myself on the entire digestive system - and ostomies along with reversal surgeries. It seems the more posts I read on here the more confusion and questions I have. For example, you had a colostomy reversal and yet you no longer have a colon??? I thought a colostomy reversal meant they restore the works so the colon can function again. I must go read. jb

Xndman
Jan 18, 2023 10:47 am
Reply to Justbreathe

If I posted colostomy reversal, I really meant ileostomy reversal. I had an ileostomy after getting my colon removed while the hookup from my small intestine to my rectum healed. These are typically the most difficult reversals to manage. I feel very lucky to be as "normalish" as I am.