Reversal of Ileostomy: Pros and Cons?

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FOR MY MOM

My 82-year-old mother had an emergency ileostomy last July. We thought we'd lose her, but she has recovered well and now is ready for the reversal. She has adjusted well to living with the ostomy; pretty much back to her old self. Her questions echo my concerns: since she has adjusted, is it worth having the reversal? Now she can live life as she wants and control her ostomy, though she hates it like everyone else...but from what we hear, the possible diarrhea? Wet farts? Runs? Burning rectum? Cramps? Hernias? Infections? More surgeries? All sound far too scary...is that the norm? Can a former ostomy patient ever have normal bowel habits and go back to the way things were? She is 82 with other minor health issues and is realistic...to her, if the trade-off of getting rid of a disgusting yet manageable bag is soiling yourself often and not leaving the house, then that is not much of an improvement in quality of life...I'm sure there are good results out there, but it's human nature to take heed of the disaster ones...appreciate any helpful thoughts?

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Juuust_James
Well, mine and I'm sure others' answers would depend on a few questions you didn't disclose, like: What was the reason for your mother's surgery? Did she have any or all of her colon removed? How long has she had the temporary ileostomy?

If your mother has UC in her colon and has lost all or a large portion of it, then she is going to continue with loose stool whether she goes through with being reconnected or not. This means she will still have frequent bowel movements and may experience side effects such as butt burn. If she has had her ileostomy for 6 months or more, I hope she has been doing the Kegel exercises to keep her anus muscles tight and working. Because if you don't do them for long periods of time, they will become weak. Thus, when reconnected, you could have "accidents" (especially at night) because you can't hold stuff in well.
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I agree with Jim... I wouldn't do it... so much pain and suffering. And like me, I ended up worse and went back to an ileostomy. If I had my chance over again, I wouldn't have done it and ended up with having more of my small bowel as they use part of that to fashion the J Pouch. Now I have lost use of that and need B12 shots monthly! Would never go back to it. Now that's my opinion. I know others may have had success with it, but for me, it was worse than UC. Regards, Helen

frizbeekid
Hi, I'm glad your mother recovered well. But sorry to hear all the trouble your mom and yourself are going through. I'm new to having an ileostomy and found that there is a learning curve to living with an ostomy. I have a different view now being on this side than I had prior to this. I am an EMT and work in hospitals and have taken care of people with ostomies. I don't find it disgusting as much as a little inconvenient and annoying. It has been a challenge having this air bag that pops up unexpectedly from time to time..lol. I laugh because it is something that I have to live with and like any other obstacle people have to work with, some more challenging than others. I have found in my field of work it could be worse. You either defecate out your rectum normally if you can or into a bag, either way you have to clean and take care of the area. I have heard that it is possible in the beginning after the reversal to not have control with what you had mentioned above. But you can have this if you get sick and come down with the flu. Like Jim said, your mother should keep her rectal muscles working, it's like anything else if you don't use it you lose it. It sounds crazy to tell someone to exercise their anus, but it's really a natural thing if someone is able. If your mother and yourself choose a reversal under the direction of the surgeon and your family doctor, there still could be a long recovery time and what you mention above are real possibilities and with all things have complications. I have found that this is a great site if you have concerns and need the insight that people living with this challenging bump in the road have gained because I have found a lot.

Hope everything goes well with your mom.
Pinky
Well, how does your mom feel about it?

Some people will go to any lengths not to have the pouch (like I did when I had my temporary colostomy reversed in 2004 and then suffered 5 years of torture until my permanent one was placed in 2009!)

If she feels okay with it and/or you are willing to help her as she gets less dexterous in managing it, then why have another surgery under anesthesia when realistically at that age she will most likely suffer from either incontinence (or worse) constipation.
 
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scotiaman
Hi, I thought I would add a few comments... At 57, I had an ileo due to ulcerative colitis and had to make the decision to reverse or not. After 16 months, I said NO for many of the reasons you have mentioned as risks. The reality is that as we age, we have less sphincter control, the bowels are less controllable, we are more susceptible to external disease and malfunction of regular body functions, especially blood flow. And with each new surgery, the risks increase. With the ileo, the waste material is going to remain to some degree fluid, so your mom will have to rely on muscle control to 'hold back the dragon'. That doesn't improve with age. I don't regret my decision not to reverse. It is a bit of an inconvenience, but I work, sail, travel, socialize, and have the choice to plan ahead for managing the output, rather than being cued that I must go NOW or face a disaster. No matter what a surgeon may say, they can't guarantee the quality of life you can expect from a reversal. Everyone is different, but for sure, the complications, especially requiring further surgeries, increase with age. If managing the ileostomy is a difficulty for her, tell us, we will help. I wear mine a week at a time with no hassle. If she is living comfortably, then she has to ask herself what she can expect to gain. I pull a short stool up to the front of the flush, empty, wipe the flange, and get on with it. If I had been younger, I MAY have given the reversal a try, but I wanted to minimize the potential for additional surgeries and live as free from bowel-related complications as I could. Best of luck.
canadian

I am learning more from this website than what I am told by the doctor and nurse. I am 65 and had the operation 8 months ago, am I too old or is it too late for the reversal? I know nothing about this procedure, I was thinking everything went back to normal!! What is a J pouch?
This is a great site, everyone so positive and cheery, it has helped me a lot to know I am not alone.

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