Getting rid of J-Pouch

What kind of problems are you having with the J-pouch?

I seem to go up and down as far as being okay then not. My frequency isn’t terrible. In 24 hours it’s 7 normally. I keep trying to expand my diet but when I do that I seem to get more gas/more soft stools and sets me back. I am a skinny guy so I am trying to gain weight but all I can seem to eat is like chicken, potato, and a few other things without having issues. It seems for me moderation is key if there’s any sugar in anything.  Since I eat lighter cool foods it always seems my stool isn’t dark and has a more yellow tint too it(not sure if that’s normal or just cuz I don’t eat anything darker in color so doesn’t come out darker?  I’m tired of going and getting up 1-2 times a night and having difficulty getting everything out.

when I had the bag, I could eat everything and anything and nothing bothered me(99% of things).  Once I got the “hoses hooked up”, I developed pouchitis that I think went untreated for at least 6-9 months because I didn’t realize it was that, I had cuffitis, and prepouch ileitis proximal to the pouch. So I think becauseI had pouchitis for so long it caused that above issue since there’s no valve to stop Inflammation backwash. I go on antibiotic. I am pretty good for about a month or so then seems to slip back.

Again, I was so much happier, weighed more, and could eat more before this freaking pouch and the issues it brought. I’m really just done with it.

-Derrick

Hi Derrick,

My situation is somewhat similar to yours minus the pouchitis.

Most people here, have pouch issues. It comes with the territory.

I recently asked my GI practice, who have a large cohort of pouch patients; where do I stack up in the universe of your patients. She told me right in the middle with everyone else. Some better and some much worse.

In a prior post I listed all of issues I have; I won’t re-list them, but basically I feel this pouch of mine is a mediocre solution to a complex problem.  

I am so grateful I do not have a bag, but this pouch has to managed.

I have daily challenges that have to be addressed.  I don’t like my situation and if I had a do over, I would not go down the surgical path and would have waited to see if CRC ever showed up.

bottom line, I am never going back to an appliance.

Everyone has a different tolerance for how much suffering they are willing to endure.

There is one gentleman here, who I hope responds, has reversed and is happy with his decision.

@New577 posted:

Hi Derrick,

My situation is somewhat similar to yours minus the pouchitis.

Most people here, have pouch issues. It comes with the territory.

I recently asked my GI practice, who have a large cohort of pouch patients; where do I stack up in the universe of your patients. She told me right in the middle with everyone else. Some better and some much worse.

In a prior post I listed all of issues I have; I won’t re-list them, but basically I feel this pouch of mine is a mediocre solution to a complex problem.  

I am so grateful I do not have a bag, but this pouch has to managed.

I have daily challenges that have to be addressed.  I don’t like my situation and if I had a do over, I would not go down the surgical path and would have waited to see if CRC ever showed up.

bottom line, I am never going back to an appliance.

Everyone has a different tolerance for how much suffering they are willing to endure.

There is one gentleman here, who I hope responds, has reversed and is happy with his decision.

Do you have pre-pouch ileitis as well or not that either. Mind you I do not know if I have that still, cuffitis or pouchitis as I got my last scope done in May.  I can tell I am better now then I was then just not as good mentally and everything as I felt prior to the reversal. For me, I suffered so much prior to my bag that it was a blessing. Eating and not having to worry, good output, and I could do things and not have to worry. Granted I am leaps and bounds better than that now also, but I got a taste of basically feeling “nothing” so to speak so sliding backwards from that to where I am now just makes me feel defeated after having so much hope and not having to think about it. Now I do.

Eleven years ago, a significant medical condition made it necessary for me to have my J pouch removed.  I strongly did not want to get an ileostomy with its associated issues.  I was aware that there were options that did not require wearing an external bag. Soon after I had surgery, I wrote an article entitled, “Researching My Options” that was published in UOAA’s magazine The Phoenix. This article can be viewed by anyone on the Quality Life Association’s web page (www.qla-ostomy.org) under the Ostomy Options and Education tab.  On this web site, you can order full-length videos of QLA’s annual conferences that feature presentations by leading surgeons who perform continent ostomies.

With my BCIR, I am leading a normal lifestyle.  I can eat almost anything I want and only need to empty the internal pouch with a small plastic tube (catheter) 4-5 times a day at my convenience.  The dime size flush stoma is located below my belt line and covered with a small absorbent dressing.  Like other major procedures, there can be complications.  Most of these can be handled with surgical and non-surgical means.  I wish you the very best in whatever you decide to do.  Please feel to send me a PM if you have any questions.

@Derrick I can’t tell if you’re getting adequate GI care, in terms of getting a proper diagnosis and appropriate treatment. You don’t say if you’ve tried staying on antibiotics. I can’t tell if you’ve tried the usual things methodically (mainly psyllium and Imodium/Lomotil). There’s a big difference between a failed pouch and a mismanaged pouch. Before you consider surgery it would be best to know which of these you’re dealing with. Having major surgery because no one bothered with necessary treatment is usually a mistake.

It is excellent that you did well with your ileostomy. If your pouch has indeed failed then your prospects are good. Most people who voluntarily switch back to an *end* ileostomy seem to be pleased, and (surprisingly to me) this seems to include both folks who have the pouch removed and those who just have it disconnected. If you go down this route try to get well informed about the trade offs between those two choices.

Scott,

I Have been on antibiotics on and off this yea. Took me 6 months from time of diagnosis to convince my GI doctor to put me on it as since I have prepouch ileitis and cuffitis he just we wanted me on entyvio because he said that would help with it all. He wanted to treat me as a crohns patient although I didn’t have the hallmarks of crohns. I pointed out can’t it be backwash since I had pouchitis for a while and he said could be but the entyvio should work for all three to be on true safe side. 6 months of not seeing any improvement and begging for antibiotics he finally gave it. I do well on them and notice a difference then when I’m off it slowly goes back to how it was.

I take 6-8’imodoum a day and citrucel 3 times a day. I have good formation some days and others just “okay”. I don’t have diharea though and from January this year to Now I feel a lot better since I have started doing antibiotics on and off. That’s where I can point to that I turned some sorta corner for the better.

That being said I am still struggling and seem to slide backwards a little after about a month off antibiotics. The frequency isn’t as bad as it was between January and June of this year but after some time off antibiotics I do notice a slip in the wrong direction.

try just pysillium husk powder instead of Citrucel or Metamucil as those have a lot of sugar in them.

Thank you. Does one work better than another?

I have had SIBO several times and chronic UC of the cuff. I take canasa suppositories daily to prevent cuffitis.

As Scott stated, the pouch has to be managed….in my case, daily!

It’s something that they do not tell us pre surgery, but we quickly realize the reality of the situation.

when my pouch is managed I tend to have good days, when not managed correctly, not so good.

I remember back in the early days post surgery and everyone telling me, just have patience.   I kept waiting for the day when the pouch would just start working. I’m still waiting.

I accept the fact that this pouch will be a lifelong struggle for good function. It’s doable, but I have to manage the situation.

i would urge you to find what ever works for you, get into a routine, and stay with it.

I for one, will never go back to an appliance. 13 weeks with the loop was the most miserable time of my life.

@Derrick, that’s helpful. I’m seeing a few things to consider in what you’ve described. It sounds like you’re trying to achieve formed stool, and for most of us this is an unwise goal. We’re generally much better off with a stool consistency more like a paste. I haven’t used Citrucel, but I’ve had good results with psyllium since the day I left the hospital. If sugar aggravates things for you then Poucho’s advice to use the unsweetened powder is good advice. I prefer Konsyl original formula, and it goes much better if you shake it up rather than trying to stir it. Why not try some things and see what seems to work best?

I’m not a big fan of the quantity of Imodium you’re taking (I limit my Lomotil to bedtime and occasionally before an extended time without a bathroom), but some folks do seem to need plenty. Make sure you know what you’re trying to accomplish with that much Imodium, since unrealistic goals guarantee failure.

I understand what your GI was trying to accomplish, and if it had worked you’d be a *very* satisfied customer. He may be being too stubborn here, though, or perhaps you and he aren’t communicating well. With any new treatment it’s extremely valuable to have a shared understanding with your doctor about what the goal is, what timeframe is reasonable for that goal, and when it would be time to declare failure and discuss options.

I’m fascinated by the fact that you and I may have very similar clinical situations, but very different treatments and outcomes. Like you, if I’m off antibiotics for more than about 10 days my pouch function becomes unacceptable, with nighttime incontinence, urgency, increased frequency, and cramping. I’ve been on nearly continuous antibiotics for about 15 years, with combination antibiotics for about 8 years. My pouch function is generally excellent, and I scuba dive fearlessly about once per week, which is about as far away from a bathroom as anyplace. I’m certainly not having any thoughts of pouch removal. I just have basic antibiotic-dependent pouchitis.

I have no idea if continuous antibiotic treatment is right for you, and I don’t know if your doctor would be supportive. There are resource papers linked to at the top of the “Pouchitis” forum here that could educate him, but that can threaten a fragile ego badly. He might prefer to try a different biologic first, and if that worked you’d be delighted. If you do go the continuous antibiotic route, most folks recommend rotating antibiotics: find about three different antibiotics that work for you, and switch to the next one every 2-3 weeks. This is supposed to help prevent any of them from losing efficacy. I wasn’t able to do this because I couldn’t find multiple antibiotics that worked for me, but I’ve done okay anyway. Cipro alone eventually stopped working, so I added metronidazole.

Good luck!

Scott,

thank you for your input. Ultimately what is the problem the you have? Is it pouchitis or something different?

I have pouchitis. Instead of the more common acute pouchitis that many J-pouchers get now and then, I have chronic pouchitis. In my case, because it responds to ongoing antibiotics (and relapses otherwise) it’s called antibiotic-dependent pouchitis.

Understood. Thank you!

It's a decision only you can make in the end.

Advice is good.

The loop was mentioned above. Can't compare a loop to an end ileo. I've had both. Loops are nightmares. And end ileo as in my case doesn't burn my skin. Leak. All the nonsense I put up with a loop. Loops are meant to be temporary. Not a permanent solution.

I opted for an end ileo. Had my pouch removed and never regretted it. So much less maintenance. I change once a week. More if it leaks. But it doesn't happen often. All the maintenance mentioned for maintaining a J pouch is gone. I change my appliance once a week and move on.

Appliances made nowadays are so sleek and simple. Trust me. If I can do it anyone can.

Keep in mind. You don't have to as in my case have your rear end removed and sewn up. My anal canal is still in place. My surgeon left it in case I wanted to get a pouch in the future.  But what I have works well and as some would never have a bag. I'd never have any kind of pouch again.

I don't have to watch what I eat. I can eat anything.  I don't have to worry about butt burn. That's terrible. 

Having an end ileo saved my life. Period. I was at my wits end also. I never thought I'd end up with what I have. But it works so well.  And so what? I have a bag. No one knows unless I tell them.

Only changes I made is my clothing. That was simple. Just can't tuck a shirt in. I stopped all the drugs I was on to try and control my pouch. I may add none of them worked. Neither did changing my diet all the time to see what works. Got my end and moved on. It's not a curse to have one. I don't feel stigmatized by it.

That being said. Only you can make the decision that's right for you. Getting advice here is a good start.

Most won't like my advice. But I'd get rid of it and get the end ileo. A person can only take so much before they break down from trying to keep it and getting it to work. As in my case. It didn't. No matter what I did.

But in case you want to try later ask your surgeon to leave everything in place to have a pouch created in the future. It can be done. If that's what you decide.

The answer to your second question is all the problems I was having. Were gone. Immediately.

And I do mean that. My whole gut area just felt relaxed. And looking back. That's where all my stress was or went. My gut still feels relaxed and no stress is held there. If you can understand that.

Richard.

Richard,

I appreciate your insight as that is very helpful. There’s not a lot of data on these things unfortunately so I really do have to rely on others experiences to see what can happen and how it is for them.

Derrick.

You can pm me anytime if you want to talk private or have any questions.

Richard.

I am sorry you are having problems hon! I was the opposite of you, I had severe problems with my ostomy but not problems with J-pouch. Everyone's body is different. I will keep you in my prayers, if you need emotional support you can always message me.