Please help: Difficulty Evacuating Pouch

Incomplete or difficult evacuation was, for me, a hallmark symptom of pouchitis. My initial bout of pouchitis was around 2 years after takedown. In regards to treatment, the pregnancy complicates matters. Not sure if antibiotics like cipro or flagyl can be taken by pregnant women. I am sure there are others here who can opine on that.

I think you need to see/establish a new GI and get it treated in some manner and have it nipped in the bud. Good luck!

Various things can cause problems emptying a J-pouch. It will now be hard to work out whether it’s C. diff because the test becomes less reliable once the Vancomycin is started. Perhaps the doctor (prompted by the nurses) would have been willing to order a prompt C. diff test before it came to that, but that won’t help you this time.

If you’re sure the pouch isn’t emptying (rather than a blockage upstream, which can feel similar) then it’s possible for inflammation to cause this, or (rarely) remaining chunks of mushroom, or a developing stricture. One strategy that folks have used successfully is to irrigate the pouch through a catheter. That might help get you through the wait until your GI visit, and you can call every morning to ask about a cancellation. Your out-of-state surgeon might be willing to have a televisit. Good luck!

Hi

Have you tried sitting in a warm sit bath a couple of times per day? Sometimes the moist heat will relax the muscles and get things flowing more freely. Also, if you are straining and causing hemorrhoids/inflammation, the warm water will help heal the area and that alone might alleviate the problem.

Congratulations on your pregnancy. I hope things resolve for you soon.  

Thank you all to replying. The issues are still ongoing after several days on the Vancomycin, so I am thinking it is not C-diff. I have a habit of trying to medicate myself (probably a hold over from UC that didn't respond to any meds and hating the wait to see doctors) though I do accept that I probably shouldn't do that.

Anyway, after multiple calls and requests, I was able to get on the schedule to see the GI for this Friday, which makes me feel better.

I have been combing the forum all day trying to get a sense of my symptoms and likely causes, and I think, like CTBarrister said above, that it sounds like pouchitis. I have never had pouchitis though, so my question there is that I am not having frequent BMs or a sense of urgency really. My main symptoms are difficulty evacuating, pressure (inside...in what was the rectal area I guess? the bottom of the jpouch closest to the exit it feels like) pressure on my bladder as well, kind of like a UTI but I don't have any other UTI symptoms, and I have started to get some mild tailbone pain that I think may be related. Is it common not to have stomach pain with pouchitis? Or frequency? Or blood?

My other, and still most serious worry, is that the straining with the mushrooms wasn't the result of pouchitis starting...but rather pregnancy constipation or an obstruction that I pushed too hard at and damaged the pouch. Is it possible to strain to the point of giving yourself a leak? Obviously, that is concerning to me because that would be life threatening, but the baby wouldn't be able to withstand a serious surgery. I don't even think it is safe for me to be scoped or to get an MRI, so I don't even know /ifhow the GI would diagnose me.

At this point, I am hoping it is pouchitis. The possibility still has negatives--I have heard starting pregnancy with pouchitis means you are likely to have pouchitis throughout the entire pregnancy. And cipro and flagyl are not considered safe in the first trimester, so I hope there is an alternative antibiotic I can take.

I am drinking kefir daily and taking Floraster probiotic, but thinking of ordering more Visbiome. I also have been taking lots of hot showers and sitz baths and using the warm water bidet (love that thing) which helps with the dicomfort.

Can anyone ease my mind about the possibility of my causing a leak/structural damage? I'm pretty worried about that.

Straining can cause hemorrhoids and occasionally prolapses, but I don’t think it’s likely to cause a leak in a mature J-pouch. Since you are straining *because* of your symptoms I’d guess that the straining didn’t cause them.

Pouchitis can behave however it wants, so it can be hard to rule out based on this or that absent symptom. I’m surprised, though, that you think a scope or MRI would be unsafe.  I think a scope (without sedation) or an MRI (without contrast) should be quite safe. I’m glad you were able to secure an earlier appointment.

Also: congratulations!

You could try using warm tap water enemas to empty the pouch. You could also start a low residue diet and drink tons of water in order to empty it easier.

It's my understanding that MRIs are considered risky in early pregnancy. I could have one later on. Scopes are fine without sedation, (I believe) but I have never been scoped without sedation, so I am not particularly looking forward to that.

The doctor's appointment was pretty unhelpful. He was reluctant to schedule a scope or prescribe meds without having it approved by the OB. He also wouldn't offer any theories to me about what could be going on. It seemed like maybe he thought it was pouchitis, but he didn't give me a solid answer when I asked, and I don't see why he would need to scope before giving me medication for pouchitis. He only talked about Cipro and Flagyl, neither of which the OB is going to OK until after the first trimester. I know there are alternative antibiotics that are considered safe this early, so I don't know why he didn't know or mention that.

My symptoms all started with the mushrooms. I didn't have any symptoms before that point, which is why I kind of doubt it is pouchitis. It has also improved a little (not significantly enough for me to feel secure) and I have never heard of pouchitis improving without treatment.

the GI gave me a rectal exam--said everything felt normal inside at the bottom. He said there was no stricture there. He otherwise wasn't forthcoming about the exam. Would he have been able to feel it there if the jpouch had prolapsed?

I think I did something when I strained. But I don't know what I did or how serious it may be. Would my symptoms be more painful if it was prolapsed? Could it be a mushroom is stuck? If it is--would he have felt it on the exam? Should I be trying to get this scope sooner? Is a stuck mushroom dangerous??

I go back in a month after getting possible treatments cleared with the OB in two weeks. (My OB is lovely though and would probably tell me over the phone what was safe and what wasn't) so should I even wait for two weeks?

I am so sorry this is all over the place. I'm just so worried and feel like I'm not getting any professional help at all. Doc told me to buy VSL (capsules as he didn't give me a prescription for the packets) and do a low FODMAP diet.

Has anyone else ever strained and then had these symptoms after the fact? Did they resolve on their own? Do you know what happened?

Also, there was some blood during the exam. Light pink. But I haven't noticed blood at any other time, so the doctor didn't say for sure whether it was exam-induced blood or that there was something going on.

And to clarify, my OB appointment is in two weeks. GI appointment is in a month. And that's just a follow up, not a scope or anything.

A prolapse can’t be diagnosed with a manual exam. A severe one can be felt protruding from the anus during straining, but most are milder than that. Unfortunately the test for a prolapse (a defecogram) requires radiation, so the best thing you can do (if possible) is to explore various ways to make this work for a while. The fact that things have improved a little is a good sign, and @Former Member’s suggestion of warm tap water enemas might help get you through this very well once you got used to the nuisance and unpleasantness. Delaying the need for medical intervention has real advantages under the circumstances, and VSL #3 helped me delay the need for antibiotic treatment for about a year (Visbiome would work just as well, and may be easier to find).

I believe I am able to empty completely--I am not having incontinence or seepage. It just takes me several trips because I only get out a little at a time. So I don't know that I need an enema (at least not currently.)

The problem is more the difficulty itself is unusual for me (and I have some rectal pressure, especially when I need to empty) and also some occasional bladder pressure. I can pass gas only when lying down. This happened very quickly. Of course, if there is a prolapse, we'll try out best to make-do until after pregnancy.

But I am frightened. And I want to know what is going on in there. Would a scope not reveal a prolapse at all? Or is there something else that could be going on?

A scope could show pouchitis or a stricture, but probably wouldn’t be able to see a prolapse. This early in pregnancy you’re unlikely to have any issues from the uterus pushing on the pouch. I always skip the sedation for a pouchoscopy, which lets it be no big deal.

Since you’re able to empty your pouch, things aren’t anywhere near grim. A strong probiotic may help things. It sounds like you’ll be fine. You now have some suggestions available in case it gets more difficult. Give your OB a call if you feel like you can’t wait (or if waiting would make you miserable). Remember to breathe.

@LizAdair posted:

My main symptoms are difficulty evacuating, pressure (inside...in what was the rectal area I guess? the bottom of the jpouch closest to the exit it feels like) pressure on my bladder as well, kind of like a UTI but I don't have any other UTI symptoms, and I have started to get some mild tailbone pain that I think may be related. Is it common not to have stomach pain with pouchitis? Or frequency? Or blood?

Liz, I never had bleeding once in 25 years of treating pouchitis. Bleeding was something I had frequently with UC and NEVER with pouchitis.

I can only give you my experience but the first symptom is incomplete evacuation. The other symptoms develop as the pouchitis goes untreated. The frequency, urgency, and cramping all get worse as the failure to treat the pouchitis continues. I know this well due to my then GI's instructions to go off antibiotics before starting VSL 3, which proved to be the most expensive placebo ever. Each time I went off antibiotics onto probiotics- and I tried perhaps a dozen times with VSL 3 and other placebo probiotics, it was the same pattern:

1. Incomplete evacuation was first thing noticed.

2. Frequency then started to increase as the placebo treatment continued.

3. Urgency would then increase.

4. Night time incontinence would then begin starting  with spotting and then waking up with massive stools in underwear or diaper (which I would start wearing when spotting noticed).

5. Late stage UC-like incontinence would then begin where every trip to toilet was preceded by a Carl Lewis-like sprint to get there.

The symptoms due to placebo treatment would become virulent usually within 7 days and intolerable by any human within 10.

It's not an on or off switch. The situation slowly gets worse. And it always got to be intolerable and then as soon as I re-started antibiotics, it would be OVER.

At some point I became disgusted with VSL#3 and flushed a large quantity down my toilet, which probably had a "street value" of hundreds of dollars at that time, pre-VSL fraud litigation. But I was so annoyed by the cost and ineffectiveness I needed to do it. It was therapeutic for me. It was going to either be a ceremonial burning in the fireplace or ceremonial flushing down the toilet. Since I didn't have a fireplace, the decision was easy.

VSL definitely doesn’t help everyone, but it’s pretty clearly not a placebo.

A pouch prolapse can be seen on a scope but I think it’s operator dependent. I have an anterior prolapse diagnosed by Bo Shen on scope but he looks for these specifically (as he can intervene). He does a maneuver where he uses suction to test for weakness in the pouch walls. I don’t think my CRS (who is great) would have identified it.

I read there is an internal sphincter that is suppose to stop you pooping while sleeping,then there are your hemorrhoids that tell you you need to go toilet and then your sphincter that releases stool.I think if instead of straining or pushing you could relax and almost like meditate to try and relax the inner sphincter.not sure if this is right but might help.

Well, I will say that there is nothing/no part of my pouch or anatomy that is "hanging out," which has made me feel a little better about the possibility of a prolapse. I even did some (TMI sorry) investigating while having a BM and nothing is coming out--except the excrement itself. And I hope that the GI would have told me if he felt something unusual, like a prolapse, during the rectal exam.

I assume, of course, that there could be prolapse problems further upstream? But right now, to keep myself calm, I am going with the view that it would be more obvious that I had a prolapse then anything I am currently seeing right now.

My symptoms seem better when I have gone a long time without eating and/or doing liquid foods, like smoothies.

I was actually curious about the internal hemorrhoids possibility--because I have read that they are "soft" to the touch and may not have been easy to distinguish during the rectal exam. I did strain a lot, so I wonder if large hemorrhoid(s?) could be causing the problem. I did have some bright pink blood during and right after the exam, which I assume could be caused by hemorrhoids. But I also do have some stomach gurgling and whatnot (which isn't unusual for me) but perhaps I could also have pouchitis?

I am a bit torn at this point because the waiting to try treatment upsets me/makes me feel anxious. I could call my OB now and do as the GI wanted me to do in two weeks during my appointment: ask about his approval for Cipro, Flagyl, unsedated scope, and an enema (I am assuming for the scope.)

BUT it just seems kind of like a waste of time. My next GI appointment isn't for another month (OB appointment is in two weeks, but he would answer my questions over the phone if I called.) I don't know that I need to ask my OB about those meds as I already know both are not supposed to be used in the first trimester. Even if he approved them, I don't know that I would want to risk it. I would be more comfortable with an alternative antibiotic until out of the first trimester (I have heard of several.) My GI did not seem to know anything about that, which doesn't give me much faith or hope. I also really don't know if I feel comfortable doing a scope this early either. I know it may be considered safe, but scopes are so...anxiety-inducing, even when not pregnant. I barely got through the rectal exam, I don't know how I feel about having a scope. Plus, I really was worried about the rectal bc I have not had a rectal (except maybe by my surgeon, but I don't remember for sure) since I had a colon! This GI was very condescending about my fear and questions, so I just know my questions about a pouchoscopy and making sure he uses a pediatric-sized scope would be treated the same way.

Any opinions on the possibility of hemorrhoids? Should I call my OB early and try to get the ball rolling before the 1 month mark? Or should I try to find another GI to get a secondary opinion?

From my experience, Visbiome is not a placebo. There is a survey I posted here about effectiveness of VSL/Visbiome, you can search and see what the community experience is. Sure everyone has a different problem, and they might not help everyone. I think you should give it a try before antibiotics, because you are pregnant. Many medications are “believed” to be safe without empirical support. Especially the first trimester is very very important. Trying a strong probiotics in order to avoid antibiotics during pregnancy is a good idea. Many disease have environmental links during pregnancy but the causes are not well known. Self-medicating or experimenting with drugs during pregnancy is a very very bad idea.

I had difficulty emptying right after takedown, and my surgeon’s PA recommended water enemas. I remember I had to do them before going to bed for a few weeks. I am not sure how long term use of them would effect pouch microbiome, but I have to say they are easier to do in a shower.

I ordered the 450 billion Visbiome probiotic packets (the largest dose I can get w/o a prescription) to try. I have used the capsules before and didn't notice any difference in pouch function, BUT I took them when my pouch was already functioning well, so I don't know that I would have noticed anyway. I only stopped using them then because of the cost. It was just too expensive to continue at that point. I will post back after taking these packets for a few weeks for anyone who is curious. I assume a large dose of probiotics is pregnancy safe?

I would for sure like to avoid any meds or medical scopes. I am hopeful that things are getting better. I just don't really know how long to continue trying alternative options before giving up on it. If things are mild and healing, then avoiding meds is priority. But untreated pouchitis can be dangerous as well. The waiting game is just...stressful, I guess.