Save 15% on Ostomysecrets with promo code SPRING

Ileostomy reversal: Worries

Next week I will have surgery to reverse my ileostomy. I've heard that some people doing this have serious difficulties with incontinence, skin irritation and in general cannot be too far from a toilet... I've heard that it can take anywhere from two months to two years to feel comfortable enough to leave the house!...

I'm concerned. My wife is very worried.

I realize that I don't really have much information to go on and would REALLY APPRECIATE IT to hear from any of you that know what the reality is for getting used to having caustic liquid constantly needing to 'get out'.

I also realize that we've probably only heard the more difficult stories, and am very interested in what the real spread of experiences is.

Thanks all for any help you can give me with this.

Bruce

Report post

92 replies. Join the discussion

My son will have a reverse surgery in a couple of months, and I try to find as much as possible information of what to expect.
As far as I understand, the first week or two, when your J-pouch is still very small, and you cannot use anal sphincter muscle, you will have to go to the bathroom a lot (most people recall 20 or more times a day). Nobody can say for sure how long it can take for you to recover, it highly depends on your general physical condition and the severity of side effects of your previous and current treatments.
Here are some websites with a general information which still could be helpful:
http://www.ucsfhealth.org/education/special_concerns_for_people_with_j-pouc hes/index.html
You can check http://www.colidoscope.com/patients/ipaa_9.html
And here are blogs and a video from people who went through this:
http://katieucblog.blogspot.com/2012/02/daily-life-of-j-pouch.html
http://j-pouch.org/groupee/forums
http://www.youtube.com/watch?v=8x2i3K0Qdd4&feature=relmfu

Report post

Hi I hope you have checked this out as once you have an eli you will have diahrea forever if you have it reversed and will be miserable ..Papa

Report post

This is a question for Papa. By "diarrhea forever" and "be miserable" what do you mean?
Lets say, that 5 or more times a day, including at least once at night, with frequent accidents, when terribly smelled water floods your underwear and there is no way to stop it - would be 10; once a day of perfectly formed stool (they say some still have it) - 0. Where you would grade the degree of your misery with an ostomy bag and with a J-pouch?
There are a lot of discussions about bag vs J-pouch and (at least for former UC sufferers) both solutions have their proponents and opponents.
Naturally, young singles prefer J-pouch and as one of them described it "If you have this option, try it. In a worst-case you can always go back to a bag."
I understand though, that sometimes any additional surgery makes a huge difference.

Report post

Ashchem - I hope your son is doing well and that his surgery goes fabulously. Thanks for the links. They are very informative, but don't apply to me directly as I won't have a pouch; I have an ileorectal anastomosis, but have had an ileostomy for the last seven months. My surgery next week will be a "takedown" of a loop ileostomy.

I've done some Google research today and found some interesting and informative sites. I've copied the addresses below. The best source of information of these I thought was the one from HealingWell.com that was started in 2009 and ran actively for three years with LOTS of responses, covering many different types of internal plumbing in an ileostomy takedown. Another interesting one was the journal of one man's experience with his takedown where he details his experiences over a couple of years.

Thanks for your response.

Bruce

Ileostomy Reversal Information: Websites

Good Journal of a man's experience
http://ileostomyreversalsurgery.webs.com/ileostomyreversal.htm

Short good info article
http://www.livestrong.com/article/280887-symptoms-following-ileostomy-rever sal/

HealingWell.com Good forum. Responses covering 3 years of experience!
http://www.healingwell.com/community/default.aspx?f=33&m=469957

HealingWiell.com Current ileostomy takedown forum
http://www.healingwell.com/community/default.aspx?f=33&m=2404983

HealingWiell.com Another current ileostomy takedown forum
http://www.healingwell.com/community/default.aspx?f=33&m=2386586

HealingWiell.com One day into ileostomy takedown. Forum
http://www.healingwell.com/community/default.aspx?f=33&m=2405464

Report post

Papa,

Thanks for your response. Like Ashchem, I too am curious to know more about your experience, and what made it miserable for you, because quite honestly, I'm questioning whether keeping my ostomy might just be a good idea... hence my concern. I'd appreciate it if you could share a bit of your experience.

Bruce

Report post

An eiliostomy is tied into the small bowel and therfore only has liquid and not stool. So you will be going to the bathroom very often as you won't be able to hold it very long. I wanted to have mine reversed but the Dr. said if I carried a pot around he would do it but he suggested against it. I have had 5 operations and almost died in 3 of them due to the bowel not lasting and getting septis (poisoning). So i'am down to the small intesting with no more large left.. This all started with heavy doses of prednisone dut to that I have Myasthenia Gravis and this is the only drug that will help it but the doses were for too long and it ate up my large intestine and every time I had the colostomy's reversed they would last about 3-4 weeks and burst as the bowel didn't have any streingth. So I have to live with the eiliostomy for the remainder of my life..Hope this helps out with your decision.. Have a good night Papa in Florida

Report post

Thanks for the links, ThreeStone. Wish you feel better with whatever decision you'll make.

Report post

I talked to my wound care nurse about this. She said it's something to really think about as you will be sore and have to use meds as it never gets a break. Been told the bathroom 10 to 12 times a day if not more. That means every 13/4 to 2 hrs a day. I chose not to have mine reversed. My life would be spent in a bathroom....also this is a major surgery...check it out 1st, if your not sure don't rush it.

Report post

ThreeStone,

Can you give yourself the time you need to make this decision or do you need to decide right away. I work acute care and have seen many patients go through reversal - the loop stomas are quite easy to reverse - that is why a surgeon will use that technique for a temporary stoma. However, I don't follow these patients for the long term so honestly don't know how they do. Please keep us informed of your decision and if you decide on the reversal I would love to know how you are doing.

Will be thinking of you as you ponder this!!
Joanna

Report post

Trecia,

It's reports like what you heard from your WOCN that make me cautious. There are enough of these to warrant concern and not as many of the more positive outcomes discussed in medical forums and other places I've looked on-line as I would like to see! However, my wife came up with a wise thought: Most likely, the people that are still experiencing difficulties with their take-downs are the ones with more interest and investment in participating in the forums, while those whose take-downs were more successful would probably participate significantly less. This could skew the impression we get, making it seem as though there are fewer success stories than there are in reality.

I have a call in to my doctor (his office promised he'd call back Monday) to see about getting more accurate statistics on this. I'll let you know what I find out.

Bruce

Report post

Joanna,

Waiting is one of the options I've seriously considered, to gain a little more of the weight I've lost and to get stronger in general, but mainly to be able to sort out the reality of the statistics on how long it takes to feel comfortable moving about in the world after the take-down. Unfortunately there are a number of reasons to get it done now: simple inertia; getting as many of the difficult medical issues delt with within the same emotional time frame; and I have a medical leave of absence now which may not be as east to get another in a year or so. Circumstances make this seem like a much more convenient time to get it done... if indeed I can feel assured that it's the right thing for me to do. I'm very much looking forward to speaking with my surgeon tomorrow.

Thanks to everyone for your support.

Bruce

Report post

Bruce,

I hope your talk with the surgeon goes well. Its sounds like you have read and researched a lot to gain as much information as you possibly can. Let us know what you decide to do!!
Joanna:)

Report post

So do you still have rectum and colon remaining? If so, I would think you would have a great chance of reversal success. I myself have a permanent ileostomy--no chance of reversal. Of course anytime someone has bowel surgery, there is always a chance of complications. But if you're in good health, have a good doctor, and don't have anything else going on--you probably will get through successfully. Prayer helps too!
Best wishes!

Report post

I have a dumb question but I have been wondering as I have had an unsuccessful resection of 12" of my colon just prior to my ileostomy. My question; if you reverse an Ilestomy and it is not successful what is the next step? Do you have to then remove the rectum/colon or do you just reverse again for a chance later? I discussed originally with surgeon and we are just letting my colon/rectum rest with no "end date" at this point.

Report post

Maybe your age will play an important role in yours. You need to ask LOTS of questions to your doctor, ask him how many he has done, how many success stories he can give you...ect. And still think very hard about it as it is a major surgery. I could have mine done but did a lot of research on it, I ask my nurse as she's the one that deals w/ us afterwards, not not doctors after 6 wks and they don't really do the followup as the nurses do. Good luck & let me know.

Report post

Torch4j,

Thanks for your good thoughts! I do still have my rectum, but do not have any colon remaining. For those that had to have the rectum removed, there is another procedure that can help where they form a pouch at the end of your small intestine to help store waste - the overall results in terms of quality of life are about the same, though having a rectum does seem to make things a little more comfortable.

Wilma,

First, there's no such thing as a dumb question (sorry, the teacher in me can't help making that point). People who still have some colon remaining (even a section as short as 10 inches makes a significant difference) have greater success with an ileostomy reversal as even a short section will help to absorb some of the liquid. My concern is that some people report extreme discomfort after the take-down because of the urgency created by having a liquid output, because that output is quite caustic and 'burns' the skin around the anus, and because without a colon there is less storage area and you have the urge to go much more often.

A "failure", to me, would be where one cannot get reasonable control of these problems within a reasonable time. It seems that there is a very wide range of experiences, from people who are able to get control within a couple of weeks, to those that are still experiencing the agony of not being able to be more than 5 minutes from a toilet after a year or two.

The solution to this is to return to having an ileostomy restored. When I first had surgery, I didn't want an ileostomy at all thinking it was a pretty awful thing to have to do. But here I am 7 months later having become pretty good at dealing with my ostomy, with no restrictions on activity or travel, wondering if I'm going to find my quality of life going down significantly. If I cannot get control of the situation within a reasonable time (how long that would be I can't say at present), I'll return to having the ostomy knowing that I'll be able to have a full active life with it.


Trecia,

I've done some more research and found a few studies that have the kind of statistics I was hoping to see where they look at quality of life after the reversal - I'll post links to these below. I'm encouraged by what I've seen - enough people have excellent to reasonable experiences with getting control in a reasonable time frame, so I've decided to go ahead with the surgery tomorrow.

I'm a little frustrated to have had to find this supportive information on my own: my doctors could quote no statistics other than to say that most people are satisfied with the results, which just didn't answer my concerns well enough. Thank goodness for Google and to access through my daughter to a med school library.


Links to articles on the quality of life following ileostomy take-down:

http://www.springerlink.com/content/j446110412132252/

http://fapinfo.com/forum/index.php?topic=49.0

http://ukpmc.ac.uk/articles/PMC2498320//reload=0;jsessionid=XiuAwTDPgW2IlXe 2Ddo7.26


Thanks to all of you who have responded. I'll let you know how things go.

Bruce

Report post

Good luck Bruce, please let me know how things go. I will check these sites out. Diane (Treca)

Report post

Bruce,

I will be thinking of you and please let us know how you do. You were so diligent in exploring all the information. Sometimes we have to be our own best advocates - medicine definitly does not have all the answers. I would love to know how you do and what you found most helpful in restoring your continence so please stay in touch!!
Joanna

Report post

Hi, This subject is very timely for me as my surgeon just convinced me to get a j pouch. I have a bad grapefruit size hernia next to my stoma. He suggested if we move the stoma we are just making another weak point in the stomach muscles and another hernia could occur. He is also removing my rectum which still contains a stump where there is still UC. So that at least removes the rest of the UC and the chance of cancer in the future. He apparently has a high percentage of success in this surgery and recovery. I told him about the comments made on this site about constant uncontrollable diarrhea. He said, that most people who would go on this site would be here because of problems, which skews (sp) the perspective, and he has a 94% success rate. Trecia, what you say makes sense. I am doing my homework and writing down my questions. I also agree, the surgeon can give me some infor, but it is the nurses who understand what occurs during recovery. You can bet I'll be picking their brains. I am very nervous about this , but I know it will solve my other problems. I will definitely check out those sights that threestone suggested, thank you. Threestone,let me know what you decide and how it goes. I am not scheduled for surgery until June 7th. Take care, Carol

Report post

Well, here I am 24 hours after surgery anxiously awaiting my first bowel movement (picture me rolling my eyes with a goofy ironic grin). I finally had a chance to speak at length with the surgeon who did the procedure, who also did my full coloectomy last fall. He's a highly regarded surgeon - considered one of the best in the Pacific Northwest, is a really nice guy, and listens well, so I have faith in him. He was able to confirm what I have recently read - that the vast majority of patients with this type of reversal are very happy with the results, and quoted numbers similar to what I've seen regarding control of incontinence. I asked him about a diaper for my two hour car ride home from the hospital, and he actually looked surprised at the question, saying I shouldn't need it. He again told me that only 2.5% of his patients choose to return to an ostomy because they just couldn't adjust.

Good luck with your decision Carol. I'll let you know how this works out for me.

Bruce

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Free Ostomy Samples

Things you can do

Discussion topics

Live with confidence

Image of ostomy brochures

Learn about ostomy, stoma care, selecting a pouching system, and more in ConvaTec's guides to living with confidence after ostomy surgery:

Great Comebacks on YouTube

Ostomy resources

Learn about a free resource for your ostomy needs

Great Comebacks e-mail newsletter

Community leaders