This is my first post, so hello everyone and thanks in advance for all the support and help

So I got my J-Pouch in April, and I still don't think it's functioning properly. My biggest problem is definitely incontinence, I have very little control. If I try to hold it in sometimes I can, but its painful and I have to concentrate hard. And I have to be sitting down. Most of the time when I am walking somewhere, I can't go too far without an accident. So that's pretty frustrating. And at night I don't wake up from accidents. So I wear protection every day/night.

Lomotil doesn't help, I got an endoscopy and everything looked fine. My surgeon wants to do a CT scan, but I'm weary to do it, especially since it requires tubes being put down my throat and I haven't gotten a straight answer about what the next step would be once I did more testing. I had to get three surgeries last year and I'm just not up for another one right now...

I've been taking codeine to try to control the symptoms, but it is honestly just helping me get from day to day at this point and I can't really see it being a long-term solution. I've also been taking VSL.

And the second surgery I got was for a perforated ulcer two weeks after the colectomy, so my GI said that my pouch might have trouble functioning due to scar tissue. He couldn't say if that would get better over time or not.

So what would you do if you were me? Did anyone have daily incontinence eight months after the surgery/could it get better over time/anything anyone has found useful I could try?

Tomorrow is the anniversary of my first surgery and I'm pretty sad that I don't feel any better today than I did then. So any help would be greatly appreciated

Everyone is going to pipe up with "do your Kegel exercises" and you should if you haven't but I doubt given what you are saying that Kegels are the answer. Seems to me you likely have more of a structural problem either how the pouch is connected and or your sphincter(s) may have been damaged or are naturally weak. Did you have a mucusectomy? A botch mucusectomy can cause incontinence. I also have this problem mine is caused by structural issues exacerbated by pouchitis. My incontinence is mostly daytime and not much at night as I am a light sleeper. Fiber can help to bulk things up and reduce leakage, other then that the most effective thing I have found is tincture of opium. I have been using it when I go out for extended periods of time and it works pretty well. I probably am heading back to the bag, I am about 13 months out and no answer in sight. I can tolerate minor leakage but mine is often worse then that.

Thanks so much! Yes, I do try to do Kegels when I remember. But I feel like half the day I'm doing Kegels when I'm trying to hold it all in.. lol. I don't even know if I got a mucusectomy, is that usually part of the total colectomy procedure? But I'm definitely going to ask my doctor about the tincture of opium!

It's so frustrating to me the idea of having to go under again and getting a permanent ostomy. Especially since two weeks after the colectomy I had a perforated duodenal ulcer, which was probably caused by the first surgery. And now if the pouch failed, I just don't really feel confident to put so much faith in this process.

I'm so sorry that you have to go through that! I wish I appreciated the bag more when I had it. I was so worried about the aesthetics of it and I felt insecure (to be fair, the ostomy leaked ALL THE TIME it was so embarrassing) but I was healthier and had much better quality of life than now. Which obviously you understand. Damn this all sucks. So nice to talk to people who understand for once.

Yes it seems once they start cutting on you it never ends. I did well on the bag so going back is not a big deal. Though I would prefer a well functioning J Pouch the bag would be definitely preferable to what I have now. Regarding the mucusectomy they are not done on everyone or even a majority of J pouchers. It involves striping the rectal cuff and is done for a number of reasons, in my case to prevent recurrence of cancer.

Tana,

Incontinence this far out from surgery is definitely not normal, particularly during the day. Nocturnal incontinence can take longer to resolve. One of the complications of this surgery is incontinence and can occur due to damage to the sphincters (from the anus being stretched open too long so that permanent damage occurs) or from damage to the nerves that control continence. These are the nerves at the dentate line in the anal canal that are at risk of damage during mucosectomy. If you did not have a mucosectomy, then sphincter damage is the more likely culprit.

I am unsure why you are hesitant to have the CT scan, since I think it is important to get this sorted out. If you have an abscess or inflammation outside of the pouch, it would not be visible on scope or even most x-rays. I have had numerous CT scans and have never had a tube down my throat for it, so I am really puzzled about what you are talking about. The worst thing I ever remember about them is having to drink the barium and the IV contrast. The scan itself takes only about 10 minutes.

Jan

Thank you!

Re: chiromancer- good luck and let me know how that goes I might be right behind you with that decision...

Re Jan: I forget what this type of CT scan with the tubes is called. But regardless, I guess since I am young (22) and I've already had CT scans I know they cause quite a bit of radiation so I'm hesitant for that reason as well.

But you are right, I have to deal with it and you have sufficiently scared me to figure out the problem. I am pretty sure I didn't get the mucusectomy (I got the surgery because of UC and haven't heard of it).

So if you think that it is the sphincter muscle that is the problem, do you know if there is a possibility it can be fixed through occupational therapy or something or if it would be damaged beyond repair?

I remember my GI suggesting that I do a test to test out the sphincter muscle tone and I haven't done it yet. So maybe my first step should be calling my GI to finally book that test. Then calling the surgeon to book the CT scan.
Thanks again!

The only exam I can think of that would require a tube down the throat is an ERCP, but it is not a CT (there is x-ray imaging though). This is similar to an upper endoscopy and is done under sedation. It is for checking for bile duct/pancreas issues. An MRCP can be done first that is not an invasive procedure. Definitely would not address fecal incontinence though.

Yes, doing some anal manometry will help to figure out if you have sphincter damage. As to whether or not it would be permanent, it is probably too soon to tell. For nerve damage, they generally say to give it a full year before assuming it is permanent. It can take that long or a little longer for nerves to repair themselves.

Jan

Thanks for all the information! At least there is some hope that it will get better over time.

I just called my doctor and left a message that I want to get the anal manometry test... so thanks again!

I have been reading more of the discussion topics lately and someone said that taking codeine relaxes the muscles which would lead to incontinence at night (or something like that?) So maybe the fact that I take tylanol with codeine (tylanol 1) during the day and night leads to some of my problems, does anyone have experience with that?

I'm not addicted to the codeine because sometimes I go days without it but it's just so much easier when I take it. I'm worried that taking so much Tylanol is harmful though.

Also, if anyone has had the anal manometry test done, does it hurt?

A few months ago I had an anal stricture that my surgeon, without warning me, stuck her hands up and stretched out and it honestly hurt so bad. Plus I was still dealing a lot with PTSD (which I'm pretty sure I still am) and it just added to the trauma of everything I've dealt with. I had nightmares about that for so long, I've just been really having a hard time with all these difficult procedures and tests that don't seem to ever end. SO FRUSTRATING. And now I keep having these thoughts that I'm going to have to get surgery again. It's really scary to me... So I guess anyone who dealt with incontinence this long after the j-pouch surgery (especially at night, a lot, without waking up from it) and it getting better without surgery- if you could tell me that and give some reassurance that would be really helpful

Hey Tana,

I suffer from nightime incontinence (solmetimes 3x/night) and sometimes from daytime incontinence. This also started months after the surgery and for me it seems related to the chronic pouchitis which is always simmering - but sometimes gets bad enought this happens. My surgeon said this for me was due to inflamation.

Re the codeine: My surgeon gives me codeine phoshate without tylenol (like T3 with no tylenol) as I did not want the tylenol. I have been on them for 2 full years - never yearn for them, only take them in response to my gut, they work better than anything else I've tried and I dont even notice taking them anymore. I would not worry about that.

Good luck

manometry test was not painful... just extremely invasive! Seems like this is the test you need to determine your muscle situation. Also they can do PT for things like that.