Seeking Support and Advice for Ostomy Reversal

Hello all

I really don't 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 I did do 6 months of chemotherapy. I finished 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.

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

..smiles...

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 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 is 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 well 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 don't know. No one does, or what to expect aside from those who have had it. After all, that is another surgery just when I am feeling normal again and doing so well....

Problems could arise, as with any surgery. I was told by my surgeon I might even have to have another surgery, an ileostomy, but he didn't think I would. Then there is the recovery time. So, I guess I am just needing some stories from some of you and your experiences with it.

Thank you

Hi there, glad you're doing better. Atm I'm in a hospital bed getting prepped for my reversal. I'm 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 forward to this. I've had mine for a year now and I'm just waiting to see what the recovery time will be. I can surely let you know how it goes and how I feel once I'm done here, but everyone's body is different and we all react differently. Like I said, I can surely say I want it taken off... But it's mostly up to you how you 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

Laquetta,

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 asshole 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 shitting 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?

Bane

Thank you Bane for sharing your story.

That is my question? Could I 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 until he looked inside my rectum with a small camera. The need to go more frequently and loose stools are two of the main reasons I hesitate.

Again, glad to make your acquaintance.

Laquetta

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.

Laquetta

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

@Denise,

Good luck with the surgery and keep us informed!

@Laquetta,

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.

Bane

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 told 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 before you schedule your surgery is ask your doctor to do a sigmoidoscopy 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.

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. I 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 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 wishes to you.

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

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 diarrhea 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 the 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 enrollment 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 described 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 maneuver. The only issues I have had at all with the J-pouch is occasional nighttime leakage, which is only a very tiny amount and is easily solved with pads or tissues in my pajamas. 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/Imodium solves this for most people. My surgeon does believe, however, that part of my success can be credited 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,

Hamish

Thank you, Bill, for sharing your story. I am so sorry you had such difficulty. I 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 to 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.

Laquetta

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 favor, but it has to be my decision and went over all that could go wrong. But he doesn't expect it to. My blood counts are all good, and after examining 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.

Laquetta

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 you have any questions about the J-pouch, though. I'm more than happy to help.

Best of luck with your decision,

Hamish

Hi Lynn. I am one of the stories with not so good results. I had a sudden ileostomy done in January of 2016. My surgeon had said we would let everything heal, and he would do the reconnection 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 used to. I decided to go for the surgery.

As it turned out, the reconnection failed, and I had another ileostomy. But if I didn't try, I would have never known. Don't be afraid. What is meant to be, will be, and there is nothing anyone can do to change it. Good luck Lynn.

Good luck. You're in my thoughts and prayers because that's what I want. Chemotherapy is depressing. It doesn't help having an underlying heart problem and I'm getting older.