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G
Hello all, this is my first post here but I've been reading this forum for a couple years, as I first got UC in October 2011.

I had 6 months from the construction of the j-pouch to the takedown surgery, which happened on September 18th 2013. Since then I have had huge problems emptying the pouch, even when my output is pretty much just water. I've had a couple pouchoscopies since the takedown, and every time they've told me the pouch is structurally perfect but haven't been able to explain to me why it's not working. I have to strain every time I use the toilet unless I take loads of stool softener, in which case my output turns to liquid and I become slightly incontinent (usually on my way to the toilet).

While on the toilet, it's like I'm forced to push involuntarily, like my stomach muscles involuntarily start to contract and I have no control over what's happening. It can be painful and always makes me feel sick. Despite this, I still only pass tiny amounts and need to go again soon after.

I was on antibiotics for a while just because I went in and complained and they said my sphinctor looked a little inflamed so just gave me some. That gave me a good amount of relief, although I still had to strain often and had a really hard time passing output and had to take stool softener a few times a day and always before bed to clear myself out before going to sleep. But the spasms didn't happen very much on antibiotics. My doctor told me to stop taking the stool softener, but didn't give me a reason why nor an alternative.

I came off the antibiotics because I'd been on them for about 6 weeks and they told me if I stayed on them any longer, they wouldn't be able to treat pouchitis if I got that later.

It's been hell since being off them. I have to be on the toilet constantly, straining constantly and in pain. My anus is swollen and inflamed, any time I get up, I have to run to the toilet, meaning I can't go anywhere or do anything. I have this constant ache inside what would be my rectum I suppose, as well as at the base of my groin. I'm also CONSTANTLY full of gas since going off the antibiotics and have to run to the toilet every 2 minutes to empty out the gas, but there's always a tiny bit of output in there too, but I can't get it out unless I've taken stool softener, so again, I have to strain.

I have been checked for a stricture, but I don't have one now. I had one in the beginning and went in for a dilation, which they said worked and now it's gone.

I also have trouble peeing, especially now that I'm off the antibiotics. I have to do kegel exercises and stop and start to get it going.

I basically haven't been eating much because I'm afraid it'll get stuck, since I can barely get liquid output out as it is.

Every time I go back to the doctors and ask if maybe I should get some other tests done or maybe we should try pelvic floor exercises they say no, we have to wait a few weeks. They always talk me out of any theories I've had about what the problem could be. I even went in and was told that there was absolutely no problem and when I asked 'well, surely if the antibiotics helped, then there must be a problem there?', they said no. The next doctor at the next appointment said yes, that is a possibility.

I am really at the end of my tether here. I haven't been able to leave the house since my surgery 4 months ago, or really the couch or bed for fear of immediately having to run to the toilet, and the doctors here in Ireland are absolutely NO HELP whatsoever and just keep telling me to wait. FOR WHAT?

Thanks for reading and any help or advice would be much appreciated as I'm really lost with this.

Graeme

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G GraemekMember
They haven't said anything about using a catheter or alternating antibiotics. They seem to be of the mind that I wait for my body to adjust and if that doesn't work then I just go back to ileostomy. I understand there is a training period involved with this operation(which is fine) but how do you train a pouch that will barely empty and generally ends up being full all day until I take stool softeners? I am willing to try anything at this point, is there any prep for the catheter? Does the output need to be watery? Do you still push? I'd continue taking antibiotics if that would work(I'd prefer to be drug free) but I always seem to be straining and never able to empty even on antibiotics but the discomfort is far better and I'm a bit more mobile. I'm dying to get back to college so I'm hoping something sorts out soon! Smiler
G
Jan DollarJan DollarModerator, RN, retired
Well, this just does not sound right. Problems emptying sound like a stricture, but that has been ruled out. Antibiotics should not make a difference with emptying problems, since those issues are usually mechanical. Antibiotics might help with problems that develop because you are not emptying properly (like pouchitis and bacterial overgrowth that occur because of the retention of stool).

So, that means that there might be a motility issue from a nerve trauma standpoint. I would be suspicious, since you now say you are having difficulty emptying your bladder too. Or, there might be a mechanical issue, such as a twisting of the pouch when you try to empty.

These things don't work themselves out over time, so I am not sure why your doctors are dismissing your troubles. If it was the typical problems of urgency and frequency that we all deal with in the early months, that would be one thing. But, this sounds different.

I would ask about a defogram imaging study that would look at how your pouch functions when it empties. It reveals information you cannot get from being scoped or a digital rectal exam. You may find it difficult to find an imaging lab that performs it though, especially if you are having trouble even getting your surgeon to understand what your issue is. https://www.lahey.org/Departme...or_Defocography.aspx

Jan Smiler
Jan Dollar
M MarkGregoryMember
The catheter just needs some lubricant, and then gently inserted. Sometimes, gas pressure alone will let everything come out. Other times, some pushing is required. If stool happens to be too thick to come out easily, then water enemas before the catheter is required for me, but not too often. Ive had all kinds of scopes, xrays, defocographies, but nothing shows up. Its just like pressure in the pouch kinks off the outlet, and blocks anything from coming out. I am so used to the catheter, it is second nature to me. I bought several, keep one in my pocket, extra one in the car, one in luggage, one in each bathroom, etc. One thing with the catheter is that a somewhat low residue is helpful, as the holes in the catheter are small and easily plugged. No sweet corn, no mushrooms, watch out for beans and nuts, veggies cooked to mush, etc. There is no reason to be bloated and miserable, when you can easily use a medina catheter and get some relief. And to be able to empty the pouch out more, should also help reduce future pouchitis problems.
M
M MarkGregoryMember
I should also mention that antibiotics just made my stool thicker, and also increased my problems emptying. I have been dilated several times, and the doctors were certain that would take care of my problems. I had very little benefit from that, and the results were very short lived. So i just stick with my catheter, and go on with my life. I have traveled overseas several times, catheter in pocket, and get along just fine.
M
G GraemekMember
Thanks for the advice everyone! Very much appreciated. I'm glad to hear someone else say it's not normal, the doctors really had me worried. I think I will try the catheter, I'd love to be able to get out of the house for at least a couple of hours. Is the pain in my groin normal? When I'm straining or when I feel like I need to go it starts to ache and peeing becomes difficult. My doctors say this will get better with time, it also gets a lot better on antibiotics.
G
pouchingtonpouchingtonMember
i have the same issues 16 months out. dr shen at cleveland clinic diagnosed me as having paradoxical sphincter contractions which means the sphincter tightens up when its supposed to relax. if you have access to cleveland clinic physical therapy that would be great otherwise try to find a pelvic floor dysfunction therapist in your area to try and help you out. im still dealing with it but many get relief from this. one other thing shen diagnosed is called levator ani syndrome. its all pelvic floor related...
pouchington
Jan DollarJan DollarModerator, RN, retired
It concerns me that you have this groin pain that improves with antibiotics. That suggests to me that you have an undiagnosed infectious condition, perhaps a perirectal or deep cavity abscess. Hopefully, it is not this, but when there are localized symptoms that are not associated with something easy to diagnose, like pouchitis, then I start getting suspicious.

It is not normal to be having groin pain, difficulty urinating, etc. Sure, the doctors expect you to have fevers, chills, and more telling symptoms when there is an abscess or other infectious process going on, but sometimes the symptoms are quite vague and mysterious. There are a number of members here who were told to be patient with intolerable symptoms, and later were found to have a pouch leak, an abscess, or something equally sinister. Usually these things can be found on CT or MRI, but even then they can be missed. Some people only found out with exploratory surgery.

So, keep pestering your doctors to get to the bottom of this! It is OK to give it time to improve, but when it is not improving, it is time to get proactive. My point is that this does not sound like the normal adaptation challenges of frequent bowel movements and urgency.

Jan Smiler
Jan Dollar
Jan DollarJan DollarModerator, RN, retired
She could easily be moving stool beyond the obstruction, but vomiting above it. But, this soon after discharge, you should not be messing around with it. If she is not having any abdominal pain, it could be due to intolerance to oral pain medications. Regardless, you should call her surgeon (unless she was doing this before discharge and they are aware of it).

An obstruction is usually due to a twist of the intestine from internal scar tissue (adhesions) that keep the intestines from moving properly. They usually clear it by stopping all oral intake, possibly inserting a nasogastric tube to keep the stomach empty, giving IV fluids and pain meds. Sometimes surgery is necessary.

Jan Smiler
Jan Dollar

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