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Scheduled For An Ostomy Reversal.

Posted: Wed Feb 21, 2018 11:18 am

Hello All

I really dont know what i am seeking from this post exactly. Just general support I guess so here goes My Story, my fears, and indecision.

Last year on May 26th I was diagnosed with Colon Cancer. I did amazingly well with that. No radiation but did do 6 months of Chemotheraphy. Finsished my last treatment on Feb 8th of this year. I was left with a colostomy bag and at first thought my world had ended. I was scared to death.

Chemo for (me anyway) was a breeze. No bed of roses and of course would have preferrred to not have to. But did and now am glad I did. Chemo (for some anyway like me again) is not the horror story it used to be. But know it can be for some. But that is not why I am posting so let me get back on track here.


When i had my surgery my surgeon told me I could have a reversal done once I finished chemo. I couldn't wait. Now as time went on I thought about nothing more than to how long till I could feel normal again. I was so excited knowing i could have it reversed. It was part of my strength.

Now that day is here and surgery scheduled for less than a month away and I am having doubts. I find myself pondering over the normal questions. Maybe I should just keep the ostomy pouch. I am doing good with it and very few problems. But it does tend to make me self conscious and worried about accidents, if I smell...etc. But I feel good. 

Will I be so lucky with a reversal? I dont know. No one does, or what to expect aside from those who have had it. Afterall that is another surgery just when I am feeling normal again and doing so well....

Problems could arise, as with any surgery. Was told by my surgeon might even haqve to have another surgery an iliostomy but he didnt think I would. Then there is the recovery time. so guess I am just needing some stories from some of you and your experiences with it. 

Thank You

Laquetta Lynn


Posted: Wed Feb 21, 2018 12:35 pm

Hi there, glad your doing better. Atm I'm in a hospital bed getting prepd for my reversa. I' nervous but excited at the same time. Idk maybe I'll just jump out of the bed and go home... 😄 jk... Nah I've been looking forard to this, I've had mine for a year now and I'm just waiting to see what the recup time will be. I can surely let you know how it goes and how I feel once I'm done here but everyone' body is differnt and we all react differntly. Like I said I can surely says I want it taken off.. But it mostly up to you how u feel about it. Good luck with any choice you make. We are all strong and united to have moral support from one another. 

XOXO Denise 😊

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Posted: Wed Feb 21, 2018 12:43 pm


  Thank you for sharing your story.  I myself have an ileostomy and had the surgery when I was 23 due to Crohn's disease.  Most of my large intestine was removed, rectum intact.  The surgeon discussed all options and that I likely would not be a good candidate for a reversal as I'd probably have very loose stool, running to the bathroom more than I already did and I would probably have a raw a$shole due to the acid content of said stool because I don't have a large intestine to soak it up.

  With that being said, I've had my ostomy for 23 years now.  I'm very happy with it as I live and breathe, I'm no longer in pain and I don't have to take medication anymore.  And I have more control over my body in a sense.  I'd rather have an accident with my pouch more than shxtting in my pants, which by the way has happened about 5-7 times in the last 23 years.  So yeah, I'm lucky.

  So I guess what I'm trying to say is take into account how much of your large intestine is left.  I'm sure there will be an adjustment period on your body learning to poop without an ostomy and possibly having to wear adult diapers for a duration.  I'm not sure but someone who has gone through the reversal will know for sure.  The only way I'd ever even consider a reversal, is if they could grow a fresh large intestine, disease free, and no issues when I went poop.  But so far, that's science fiction.

  Is there a reason why the surgeon says you might have to have an ileostomy?



Posted: Wed Feb 21, 2018 1:03 pm

Thank You Bane for sharing your story. 

That is my question? Could be I would be better off just staying with my pouch. He said that would only be in the case of leakage from my stool afterwards into my body. Though he did not think he would have to it was something I needed to be aware of. He told me I was a good candidate for it and had enough of the rectum left to work with which was more than he originally thought till he looked inside my rectum with a small camera. The needing to go more frequently and loose stools is two of the main reasons I hesitate

Again glad to make your acquaintance


Posted: Wed Feb 21, 2018 1:14 pm

Oh my dear... I will send a Big 🤗 Hug and a prayer that all goes well. You are probably in surgery now. But you will see this when you log back in. Thank you so much for your response and sharing and ....PLEASE!....stay in touch as you can. I want to be there for you. 

Thank you so much for your response. It as well as others will help me in my decision. Though I feel pretty strongly that I will most likely keep my appointment to have it. 



Posted: Wed Feb 21, 2018 1:18 pm


  Good luck with the surgery and keep us informed!


  You're welcome and glad to make your acquaintance as well.  Hopefully you have enough large intestine so the frequent bathroom visits won't happen.  But certainly something to consider.



Posted: Wed Feb 21, 2018 5:08 pm

My situation is slightly different, as I had to have radiation as well as chemo for my cancer. I actually just had a resection at first - they cut out a section and sewed me back together, then chemo and radiation. I don't exactly know what caused my subsequent lack of bowel control (the radiation or the chemo, or just because I lost 13" of my colon. Never severe, just leakage if I coughed or sneezed, and ALWAYS diarrhea. (This was mainly while I was still in treatment - it got better later.) Miserable. And because of the radiation, I wouldn't heal properly - I had a spot that wouldn't heal and eventually perforated. That's when I got my ostomy, and was todl I could be reconnected in 6 months to a year.

If I had not had radiation, I probably could have been reconnected. However, the radiation has caused extensive damage to that whole area, and he now feels that reconnection probably will not happen.

What I'm trying to get at, though, is that your situation is very different. You probably have a MUCH improved chance of successful reconnection because you had no radiation. What you probably want to do befor you schedule your surgery is ask your doctor to do a sigmoidascope and have him see if he can evaluate the condition of the remaining stump. Then you can discuss the chances for a successful reconnection, and discuss the potential for problems with leakage and diarrhea. The more you know, the better you can decide.

Posted: Wed Feb 21, 2018 5:53 pm

Hello Dana and thanks for the response.

I am sorry you had such a rough time of it. Your story is heartbreaking and I feel for you. I have been blessed and lucky with my procedures so far. Think I fear something similar with this one since the first surgery and chemo went so well. I feel like maybe I am pushing my luck but my savior Lord Jesus tells me different in his subtle ways.

No I did not have radiation but was told they could reconnect about 4 or 5 weeks after the chemo. Which is where I am now. 

The leakage is mainly what I was concerned with. As well well as the need to go more often. My surgeon did do a sigmoidoscopy and said he was surprised at how much left to work with and that i was a good candidate for a reversal. Which they have said all along. I think I am worried that the whole first procedure from the colon cancer surgery to the colostomy all went so well. I fear this one may not. Silly superstition I know but hey we think of everything don’t we?...🙄

Good Luck and best of wishes to you. 


Posted: Thu Feb 22, 2018 2:35 am

Hello Laquetta . My own story was that of a botched opertion on piles leading to severe incontinence and a prolapsed anus, which they tried to fix but failed. I was in so much pain and the incontinence was hard  to manage. Having a stoma more or less fixed it and managing the output is so much easier from the front than it was from the bottom. They did tell me that I could have a reversal but I disagreed with their logic as I believed the problems with the prolapse would be likely to return once the pressure of faeces was back on it. I am fortunate that I can irrigate, so I don't need to wear a bag during the day, which makes management that much easier. There is no way that I would want to chance going back to how it was so I will stick with what I've got.

We are all different and these choices have to be made based on what the circumstances and thought processes are for each one of us. I hope you make the right decision  for you and that it all turns out well. 

Best wishes  Bill

Posted: Thu Feb 22, 2018 4:00 am

Hello Laquetta,

I'm 18 and had my ileostomy for roughly eight months last year before having a reversal on 23/11/17, so I'm three months out as of tomorrow. My story starts with extremely rapid progression of ulcerative colitis. In February last year, I started to have diarrhoea with blood and experienced almost incapacitating fatigue, the combination of these causing severe malnourishment and dehydration. This continued for about three weeks before a gastroenterologist saw my blood tests from my GP and directly called and told me to admit myself to hospital immediately. He diagnosed me with UC that day and exactly one week later I had my colon removed.

I went to uni after about three months of recovery due to having had to cancel my enrolment for the first semester. I completed the semester, during which my surgical wound opened up due to a mucous fistula that my surgeon had created but never warned me of.

My reversal went well, and my surgeon decribed it as a textbook surgery. He put this down primarily to both my age and my lack of excess weight, as I am roughly six foot and weighed about 60kg, so I had very little fat tissue for him to manoeuver. The only issues I have had at all with the J-pouch is occasional night time leakage, which is only a very tiny amount and is easily solved with pads or tissues in my pyjamas. I was also concerned with the rate at which I was using the loo, but from the beginning I was only going about six times per day, plus one at night. I have recently introduced myself to the wonders of Gastro-stop. I rarely need to go overnight and I am going about four times per day. Stools were only loose in the beginning for me, but I seem to be pretty lucky in that regard. Apparently Gastro-stop/Immodium solves this for most people. My surgeon does believe, however, that part of my success can be creditted to my age.

I hope my story provides some guidance. J-pouches aren't all bad, despite what you may read online. I was also a bit apprehensive about having my surgery at first due to the amount of negative stories about J-pouches, but there are success stories, they're just told less frequently. It is a tough decision, so I hope my story can be of some use to you.

Best of luck,


Posted: Thu Feb 22, 2018 8:35 am

Thank you Bill for sharing your story. I am so sorry you had such difficulty. Wish it could have been better for you. This is what I am looking for from here both the success stories as well as the not so successful and make some new friends along the way. I always tend to look more at the negative side of things rather than the positive. I had no choice on the first surgery as it was an emergency surgery. I arrived at the ER, was diagnosed, admitted and in surgery early the next morning. But with this one i do have a choice. I am both scared and excited at the thoughts of it. That is why I came on here to get views and input to help me with my decision from you wonderful people who have taken the time to respond and been through what i might be facing. 

Thank You


Posted: Thu Feb 22, 2018 8:48 am

Thank You Hamish. 

So grateful for your response. Glad yours was a success story at least in the end. I know at your age and active lifestyle you had to be scared. I know I would have been. I am a lot older than you but am slender so weight is not an issue with me either. I weigh about 125 and about 5'6 in height. The Dr tells me all the odds are in my favord, but it has to be my decision and went over all that could go wrong. but he doesnt expect it to. My blood counts are all good and after examing the inside of my butt he was encouraged that all would go well.Everything was in my favor. Your story has been a great help and all of you wonderful thoughtful people sharing with me will  definitely help me make my decision. 

Thank You so much



Posted: Sat Feb 24, 2018 9:16 am

Hi Laquetta,

Of course I was scared. Before my emergency colectomy, I was terrified. As my gastroenterologist told me before I got knocked out for my final sigmoidoscopy that determined if I needed surgery, "it's normal to be scared, whether you're 17 or 70." There are plenty of concerns that need to be considered with reversals. Due to my surgery not having any complications other than wound healing issues, I can't give any educated advice about possible complications. Feel free to let me know if have any questions about the J-pouch, though. I'm more than happy to help.

Best of luck with your decision,


Posted: Tue Mar 27, 2018 1:09 pm

Hi Lynn.  I am one of the stories with not so good results.  I had a sudden illiostomy done in January of 2016.  My surgeon had said we would let everything heal, and he would do the re-connection done.  At this time however, I was doing very well.  Eating, and drinking whatever I wanted with no problems at all.

When the time came I started pondering, do I leave things the way they are, or go back to the way of life that I was use to.  I decided to go for the surgery.

AS it turned out, the reconnection failed, and I had annother illiostomy.  But if I didn't try, I would have never known.  Don't be afraid.  What is mean to be, will be, and there is nothing anyone can do to change it.  Good Luck Lynn.


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