Illestomy Reversal risks, can it work?

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Illestomy Reversal risks, can it work?

by Sarah2015 on Tue Apr 14, 2015 09:10 PM

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Please can anyone help, I feel I'm drowning. My father had rectal cancer in 2013' he had the tumour removed and a temporary illestomy fitted. Two years on he is desperate for a reversal, but it has been delayed due to a cavity which has been slow to heal. I want to support his decision as I understand it is his body, but there are several risk factors I feel he is ignoring. 1) he was diagnosed with Parkinson's which is a neurological disorder which effects muscle control, 2) the cavity he has could form an abyss. 3) the join is very low in the rectum so function would be poor, 3) he doesn't react well to surgery, ends up in intensive care with post operative delirium, which is very distressing. 4) has not been the same since his first op which he was really poorly and ended up in hospital with near kidney failure. We are at such an impass, my mum is worried sick as it's been very traumatic 2 years with several emergency trips to hospitals with blocked bowel, and my dad is desperate to be 'normal' again and reversal Asap and just doesn't hear the negatives. The surgeon is happy to go with whatever dad wants. Can it work? Is it a risk worth taking? Please can anyone who has been there offer me either a ray of hope that it will be ok, or the words to persuade him to a colostomy. Thank you for reading.

RE: Illestomy Reversal risks, can it work?

by kathOB on Wed Apr 15, 2015 07:29 PM

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I have an ileostomy and would not consider a reversal.  The output from my stoma is too loose and woud be diarrhoea all the time from a reversal.  In my case it would not work.

RE: Illestomy Reversal risks, can it work?

by Carolyn53 on Wed Apr 15, 2015 08:17 PM

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It sounds like your father has several health issues which would make any kind of recommendation from all but his doctor a risky undertaking.  All I can tell you is that I had an ileostomy for 9 months following removal of a tumor, lots of colon and my rectum.  A new rectum, called a J-Pouch was made using a portion of my remaining rectum.  During my 9 months with the ileostomy, I read so many horror stories about the reversal and was convinced I could not do it.  But my husband convinced me to stop reading and just get it, so I did.  I am so very glad too.  Because of the J-Pouch I live with chronic diarrhea but have figured out what food and drinks trigger it, so I am a smart eater.  I cannot now imagine that I ever even considered not having the reversal.  I live with my new normal and am so happy with the decision.  As for your father, I would certainly discuss everything with his doctor and let his doctor convince YOU that all will be well if he has the reversal done.  

RE: Illestomy Reversal risks, can it work?

by Carolyn53 on Wed Apr 15, 2015 08:19 PM

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And of course, I meant to say that my J-Pouch was made with remaining colon, not remaining rectum.  Sorry.  I wish there was a way to get back in here and edit things...

RE: Illestomy Reversal risks, can it work?

by kimangel on Wed Apr 15, 2015 08:36 PM

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I had a very low mass on rectum  had reversal if you never had a bag u have no idea   There is no dignity in having one  Let him get the reversal its been 2 long years of hell for him  

RE: Illestomy Reversal risks, can it work?

by pednursedeb on Thu Apr 16, 2015 01:19 AM

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On Apr 14, 2015 9:10 PM Sarah2015 wrote:

Please can anyone help, I feel I'm drowning. My father had rectal cancer in 2013' he had the tumour removed and a temporary illestomy fitted. Two years on he is desperate for a reversal, but it has been delayed due to a cavity which has been slow to heal. I want to support his decision as I understand it is his body, but there are several risk factors I feel he is ignoring. 1) he was diagnosed with Parkinson's which is a neurological disorder which effects muscle control, 2) the cavity he has could form an abyss. 3) the join is very low in the rectum so function would be poor, 3) he doesn't react well to surgery, ends up in intensive care with post operative delirium, which is very distressing. 4) has not been the same since his first op which he was really poorly and ended up in hospital with near kidney failure. We are at such an impass, my mum is worried sick as it's been very traumatic 2 years with several emergency trips to hospitals with blocked bowel, and my dad is desperate to be 'normal' again and reversal Asap and just doesn't hear the negatives. The surgeon is happy to go with whatever dad wants. Can it work? Is it a risk worth taking? Please can anyone who has been there offer me either a ray of hope that it will be ok, or the words to persuade him to a colostomy. Thank you for reading.

My husband has had an illeostomy since 2008. He was offered a reversal and decided against it. He only has 6 inches of his large bowel left and the concern is that he would be incontinent if he had it reversed. He decided he would rather live with the bag rather than incontinence. There are several support groups on the internet for people with illeostomys. Maybe they can help you and your mom as well. My husband is 74 and almost died when he had to have emergency surgery 4 days after the initial surgery due to bleeding and infection. Tell your dad my husband says he at least feels like he has some control over the bag. If he had the reversal surgery, he might be incontinent and have no control. Hope this helps. 

RE: Illestomy Reversal risks, can it work?

by ajp1228 on Fri Apr 17, 2015 12:15 AM

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My mother had a temporary illeostomy which was reversed after 4 months.  She stayed dehydrated during the time she had the illeostomy, due to a thrush infection right after the surgery which made it hard for her to eat and drink normally and then, when she was finally eating better and barely starting to hold her own, her oncologist wanted to start chemo treatments but she wasn't strong enough to tolerate and got sick and dehydrated again after the first treatment and had to discontinue them.  After that, she was finally given home IV fluids for the last 4-6 weeks before the illeostomy reversal because she still was not eating right.

With that background, she was rather weak when she had the reversal surgery.  It took her system a long time to fully wake up.  She was in the hospital 13 days, then was only eating a few bites when they sent her home.  She continued to lose weight until I got her started on high protein Boost; she drank a little at a time and finally finished one bottle each day.  That at least stabilized her.  She did have some mild diarrhea and would have to rush to the bathroom and sometimes did not make it, but that is common after the reversal until the body readjusts.  It would have been worse if she had been eating normally, but she ate less after the reversal surgery than before.  She also got sick at her stomach about every week to ten days.  This went on for about 2 1/2 months; then she was able to gradually start eating more and she was finally eating normally again around Thanksgiving, after having the reversal in late June.  She then bounced back and regained most of her strength.  Her bowel movements became less liquid over a few months and are now solid but soft.  They are small because she does not have all of her rectumn and has to go a few times a day.  Sometimes she still has a hard time making it to the bathroom, but that rarely happens now. 

After all that Mother went through, she is much better off after the reversal than with the bag.  However, the reversal surgery was hard on her.  If I were you, I would consider getting a second opinion about whether your dad is up to having the surgery.  You might also ask the doctors about whether the illeostomy could be changed to a colostomy and if that type of surgery would be easier on him than a full reversal.  Then the bag would be lower, attached to his large intestine rather than the small intestine, and he would have actual somewhat-solid bowel movements instead of fluid running out constantly.  If he can't have a full reversal, a colostomy sounds like it would be much easier to live with than an illestomy. 

RE: Illestomy Reversal risks, can it work?

by ajp1228 on Fri Apr 17, 2015 12:19 AM

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By the way, Mother's surgery was in 2012.  She is doing well now - except she's now dealing with metastisis to her lungs, which turned out to be uterine cancer instead of colon cancer.  They retested her colon tumor last year and found it was not colon cancer as they first thought but was uterine cancer; they must have missed something when she had her hysterectomy in 1995.  The lung tumors are still small, so she's still doing good for now.

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