Jpouch success rates? (New ostomate still coming to terms with it all)

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messthezombie
Regular Member


Date Joined Sep 2016
Total Posts : 27
   Posted 6/12/2017 6:36 PM (GMT -7)   
Hello, I recently had emergency subtotal colectomy and ileostomy surgery following the perforation of my bowel from a colonoscopy for an ulcerative colitis check up. I had only had colitis for a year and so needing emergency surgery was a big shock, and I had definitely not yet reached the stage of wanting ostomy surgery. But anyway it happened, the end of my colon and rectum was left because it appeared relatively healthy, and my surgeon had hoped it could be saved and reconnected in a reversal. however since the surgery the stump has become inflamed again and so my surgeon says a j pouch is now the only reversal option.

I've had my stoma for 10 weeks now and have not had any major problems with it, got used to it pretty quickly. I know it saved my life but i'm struggling to 'love my bag' like some people say they do. I hate having to empty it many times a day in order to not have a strange looking bulge in my jeans and I don't like depending on so many supplies now I can't go out anywhere without bringing a handbag. Changing it is a faff and 15 mins that i'd rather not spend cleaning up poo. I really want to go swimming but now there's so many more things to worry about.

Currently, I am thinking I want to have the j pouch surgery for said reasons. From my research so far It seems most people with a j pouch go to the toilet 4-8 times a day, which I feel I could deal with because atm I go about 5 times a day to empty my bag anyway. I do have a few worries though, firstly it seems that the recovery period from takedown surgery can be very long - but how long on average does it take to learn to control the pouch and have minimum bowel movements a day? Also how common is pouchitis? what triggers it? What's the likelihood of chronic pouchitis? How successful are j pouches overall - do most people prefer them to having an ileostomy? Do most people keep them? Quality of life in comparison to colitis and having an ostomy? How many people end up having their j pouch removed? Why do people get their jpouch removed?
20 female diagnosed UC May 2016
Hospital admissions: May 2016 (2 weeks), Dec 2016 (12 days), April 2017 (4 weeks)
Previous meds: Prednisolone, mezavant, Humira, azathioprine 100mg, infliximab
Surgery: emergency ileostomy April 4th due to perforated bowel.
Currently: 10 weeks post-op and off all meds

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15235
   Posted 6/13/2017 7:39 PM (GMT -7)   
I am happy I got reversed. I definitely could have lived with my ileo, but I had many of the same issues you mentioned, all of which would have probably minimized if I had the pouch for longer, but I can't say for sure since i reversed. I didn't mind the emptying as much as I minded a bulge or unintentional noises. I also didn't like carrying a handbag all the time, or having supplies on-hand. It wasn't the end of the world for me, and I never needed to use my emergency supplies when I was out in the world, but I don't carry a bag normally, and I don't love being dependent on supplies if I can avoid it. The initial recovery from the takedown was really quick for me. I was out of the hospital in under 48 hours. The period after that where things calm down is much longer. It took months before I felt confident to pass gas, not because I couldn't, but because I just wasn't that familiar with what I was feeling. I am better now, but it's been almost 1.5 years since my takedown. At the same time, I went to parties a month after my takedown. So even though it wasn't perfect, I could manage it with my diet, and it didn't stop me. If I didn't pig out, I could avoid trips for a while. Now, at a year and a half, I can eat whatever, and do whatever I want. Yes, I go to the bathroom more, but it's not urgent, and no one would know I had surgery unless I told them or showed them my scars. I don't want to paint a perfect picture though, I have new problems now. I don't have the most formed output, which can require more wiping. My butt burns from hot peppers so I avoid them. going to the bathroom can be noisy. I clean the toilet more. I get up in the night often to empty. A lot of these things you can minimize with diet. Some people take imodium to reduce trips, but I don't bother. I don't really go that much that it's an issue, but I don't like when it's noisy, especially in public, and it almost always is. I also don't like getting up at night, but I have to eat early if I want to avoid it... You can see it as fantastic or you can see if it a hassle. I try to see the positive. It's much better than I was dealing with having UC. I was going 20x, in pain, spending tons of money and taking all sorts of drugs. Pouchitis i don't know much about. I think it's not often chronic, it's more prevalent in men, but it can happen to anyone with a pouch. Usually it is remedied with antibiotics.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Albannach
Regular Member


Date Joined Jan 2016
Total Posts : 90
   Posted 6/13/2017 9:10 PM (GMT -7)   
I can only speak for my own experience, but here's what I have found so far:

<<how long on average does it take to learn to control the pouch and have minimum bowel movements a day?>>

Learning to control the pouch wasn't very hard. Apart from a little bit of nighttime leakage in the first two weeks, I was continent from the beginning, although emptying it did get more comfortable once my body had recovered from the surgery (I had open surgery). There has never been a sense of urgency. I'm down to around 4 BMs a day and sleep through the night, and have been like that for a while now. I'm nine months post-surgery.

<<Also how common is pouchitis? what triggers it? What's the likelihood of chronic pouchitis?>>

I read one study on this that said pouchitis is actually an umbrella term for a group of things that affect j-pouches. Some people get it by using NSAIDs, some people just get one episode of pouchitis, some get it chronically. I haven't had it so far. A lot of j-pouchers never have it. The majority of j-pouchers don't get chronic pouchitis.

<<How successful are j pouches overall - do most people prefer them to having an ileostomy? Do most people keep them? Quality of life in comparison to colitis and having an ostomy?>>

The overall success rate is very high. The studies I've seen say that the actual satisfaction rates between ileostomies and j-pouches are similar. People with j-pouches generally report a slightly improved sense of body image, but not by much. In my case, I prefer my j-pouch for practical reasons (not having to manage a stoma or bags, not needing to empty my j-pouch as often as I emptied my bag, being able to wrestle with my kids without needing to protect a stoma, etc), but was happy with an ileostomy as well. The one thing that was better with the stoma was being able to use the bathroom silently. Emptying a j-pouch is quick, but can be noisy.

<<How many people end up having their j pouch removed? Why do people get their jpouch removed?>>

Rates of j-pouch failure and removal are very low. Some people have them removed if they develop Crohn's, and it affects the pouch. A small minority of j-pouchers get bad chronic pouchitis, and decide to have their pouches removed to get a better quality of life with an ileostomy.

Benny Stringer
Regular Member


Date Joined May 2014
Total Posts : 88
   Posted 6/14/2017 10:02 AM (GMT -7)   
Hey, hope things go well along your journey. Here is how things went for me after my last surgery. And things have only gotten better:

http://determinedchristian.com/round-3-j-pouch-surgery/
First symtoms of UC in March 2013.
Meds worked for a bit, but didn't last.
Emergency colon removal in August 2015.
Loop ileostomy and jpouch created in May 2016.
Take down surgery in August 2016.
Currently a JPoucher taking about 3 immodium a day to keep output to 3-5 times a day.

bluenash
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/2/2017 4:13 AM (GMT -7)   
Messthezombie. With my J-pouch I have 20-30 BM's a day. I got mine in 2009. I have had about 31 surgeries since. There was a lot of infection. I went septic a couple times. Then you find out if you are a male, it your sex life almost can come to a stand still. Since they cut so close to the rectum, you lose some of what you "ready" you. I go every two hours on a normal night. Then when I get up I go 5-7 times before I can leave. If I don't eat much the day before, then I can go much longer. I imagine yours is already done by now, but wanted to let someone else considering the procedure to research the facts carefully before jumping in. With all that said I would still rather have my J-pouch. I hated the bags. I go from 175 to 160 quite a bit also. So anyone getting the procedure needs to think about up and down weight. I have several different sizes of clothes I keep. Hope this helps someone.

Mar68
New Member


Date Joined Oct 2017
Total Posts : 10
   Posted 11/4/2017 12:07 PM (GMT -7)   
Hello,
I have a colostomy but i am curious as to what a j pouch is and what it entails inside the body. I mean i never had UC or Crohns but i do have a really unpredictable bowel. My colostomy was due to a rupture of my colon and was emergency surgery. I have severe diverticulitis. Im always fighting either bad constipation or diarrhea. Just like to know about others bowel problems and how they deal with it. Im already seeing that what i had was nothing compared to many here in this forum. I mean yes it was a shock but my gosh so many of you have been through extreme illness due to intestinal issues.
Im learning to live with it. It was 6 weeks ago so its still very new to me. Im glad i found this forum. I have stopped feeling sorry for myself due to what i have learned here about all of you poop heroes.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15235
   Posted 11/4/2017 12:40 PM (GMT -7)   
Mar, you may not need a jpouch. You still have at least some of your colon and your rectum. You could potentially reconnect to what's existing. With your natural rectum and part of your colon, you wouldn't deal with a lot of the issues jpouch people deal with. The colon and rectum absorb fluids and that compacts the stool. Since we don't have those parts, ours BMs will never be as infrequent as people with a colon. You should talk to your surgeon about what a reconnection would entail in your case. Jpouch is IPAA - they make a stool container from your terminal ileum. There is also IRA where they connect the small intestine directly to the rectum. That should yield a more "normal" result - though life with a jpouch is a great alternative. Maybe you wouldn't need either and you can keep the majority of your colon. What was the rupture due to?

and wow, a poop hero! I never thought I would get that title, but I like it skull
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.
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