Skip to main content

Hi all,

I need urgent advice. I posted a question about fertility in the Women's tag a few weeks ago...and I will delete it soon because I am pregnant. I found out a few days ago, but I only tested because I had a sudden onslaught of terrible symptoms with my Jpouch, and I wanted to make sure I wasn't pregnant so I could try to medicate myself.

About 4 days ago I started having sudden difficulty evacuating the pouch. I've had great pouch function since my takedown almost two years ago. (I had one bout of C-diff right after, which was treated with a Vancomycin taper that cleared it up.) I had eaten cooked mushrooms in pasta before the difficulty started, so at first I assumed I had a partial blockage caused by a mushroom. I have never had a real blockage before, but I do occasionally struggle a bit to get things moving after eating mushrooms.

But then, as things continued, I was able to get...things out? Including several big pieces of mushroom. I strained a lot to do it though, and I noticed that I felt like there was gas inside that I couldn't relieve while on the toilet. I could only get the gas out from one position, on my back with my legs curled up, and I started to have stomach cramps every couple of minutes like I needed to go when I couldn't--this was a big sign of inflammation in the pouch to me because the only other time I experienced these symptoms was when I had C-diff post-takedown. The consistency of what was coming out was not hard and I think all the mushrooms were gone...so it didn't make sense for me to struggle to push things out. At first I thought maybe it was pouchitis because it didn't seem as painful as C-diff had been before....but then

As the symptoms continued, I thought that it had to be C-diff because it was similar. I had lots of Vanco left from my very long taper after my last bout of C-diff and it was the only drug I had here (I also had flagyl that I had to stop taking because of nausea and a few doses of an oral steroid) that was pregnancy safe. I started taking the Vanco that night...and have probably taken one whole day of 125 mg/4x, plus two doses the first night, and one dose this morning...

and I got a bit better. The stomach cramps stopped, and the gas eased up. I still can't pass it on the toilet like usual, but there isn't as much of it. I hoped that meant I was right about the C-diff and was treating it. I took a pregnancy test yesterday to rule it out--we have been trying to get pregnant, but obviously I thought it would be negative and would help me ease my mind about taking meds...we got wonderful news, except now my worrying about all this is quadrupled.

I have had rectal and pelvic pressure since this...whatever it is...started. I also had that when I had C-diff with a colon (I have had C-diff twice, before and after surgery. It nearly killed me the first time.) But I don't remember it taking this long to treat that symptom before. I am still having rectal and pelvic pressure--I cannot...feel when I go to evacuate the pouch. It feels heavy, like something is inside, and I can push out some...but I cannot tell how much or if the pouch is full or empty really. It is almost like my nerves back there are messed up.

I am very scared. I tried calling my GI here (who is not my old GI with me when I had surgery, I've moved since then. I have only had one telehealth appointment with this GI when I was healthy during my last pregnancy in 2020.) But they say they cannot get me on the schedule sooner than two weeks from now. Then I called back and talked to the nurses, who promised to pass on my questions to the doctor...the doctor still hasn't called back. I tried scheduling with another GI to see if they could see me sooner, and they also had a wait time of 2-3 weeks (plus also basically said their doctors don't "steal" other doctors' patients. Which I found very belittling since I am scared and in pain looking for help, not a commodity to be sold and stolen back and forth.)

I don't know what is going on. I thought maybe it is C-diff and is taking longer to respond to the meds? Or maybe pouchitis and I need different meds? I have never had pouchitis before, so I am not sure what it feels like. But at this point I am also very concerned that I damaged something straining, in which case I would think that could be life threatening if untreated. Best case scenario...I gave myself a terrible anal fissure or internal hemmorroid? I'm not having any stomach pain, just the rectal pressure and difficulty passing stool.

Does anyone have any ideas about what's going on? Should I go to the ER so I can get some sort of care? I have put off trying that because they usually don't know how to help me until the GI on call shows up (and they usually don't have a great understanding of Jpouches) and everything is full here because of Covid. I'm afraid I will go in, sit for 10 hours, catch covid while pregnant, and still not get any help. Alternatively, I could keep calling around to other GIs or local colorectal surgeons to see if they would see me instead? Or I could try to drive outside the city...(I am in the US, Dallas-FortWorth area) or I could call my surgeon who is in another state and try to get a plane ticket to go see him? Should I call my OB about the pressure and see if they will do something? I don't think the rectal pressure is related to the pregnancy, but my OB is much more responsive than this GI doctor.

Please help...

Original Post

Replies sorted oldest to newest

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!

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 @Elif’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.

Last edited by CTBarrister

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 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.

@Elif, if the difficulty worsens, I will find out about the enemas. I have used some before--I think mostly before surgery, but I got pretty comfortable with them.

Currently, I am able to empty. I just have to be really careful not to strain, which often means multiple trips for one BM. The issue is moreso just that, for me, difficulty emptying and only being able to pass gas in one position usually indicates inflammation or some sort of problem.

Hopefully this is something I caused with the mushrooms/straining...and it goes away without invasive treatments. Just not really sure how things will go right now.

Thank you for the advice though! (and everyone else on here; it has been very helpful.)

I have spoken to my OB who cleared a sedated scope in the second trimester, unsedated in the first. He also said no to Cipro and okay'd Flagyl--although when I suggested doing an alternative antibiotic, like amoxicillan, he said that would be even better. I actually forgot to ask him about the high dose VSL, but I will probably just hold off on taking it and bring a packet with me to my first appointment so he can actually look it over in person.

I am still drinking Kefir, but I had to stop taking my Floraster probiotic for a few days because it made the gas (which, since I can only clear that by doing weird bodily contortions right now) worse. Gas seems to cause cramping/urgency in the pouch right now.

I have shown some improvements: less pressure/discomfort in my rectum, have passed gas more easily (even once or twice on the toilet), and it feels...less inflamed down there? I can kind of feel things moving through more easily.

But I have also not shown enough improvement to make me feel better about the situation. Several times I have eaten something that has caused urgency/trapped gas, which ultimately led to going to the bathroom more and caused other problems. A big problem was brought on from eating a cheeseburger (with no veggies on it) and fries. I have never had a problem with that before. I am assuming it is grease that caused the problem. Beef stew, with minimal very, very cooked veggies seems to be the most soothing to the pouch at the moment. And pumpkin bread also did well, oddly enough.

I am thinking that this sounds like pouchitis. I can feel inflammation inside--which I know sounds crazy--but it is a similar sensation to what I felt with UC. In fact, that is why I have been so scared. Right before I had my surgeries, I started getting these exact symptoms (except with addition of blood, of course...and the symptoms were magnified by a 100) and that was beginning stage Toxic Megacolon. So, naturally, I am concerned. My hope is that I am just feeling some lowgrade inflammation, like pouchitis. It came on so suddenly that I don't see how it could be severely inflamed? But I guess I underestimate my body' deep urge to attack itself. Can J-pouches suffer from TMC or something like that? I am really hoping not.

Now, everything seems to sit with me. I'm not sure how long I can play the "wait and see" game--how long should I try to go without treatment? How long would it take something to clear up on its own?

I also personally do not want to do a scope. I feel really iffy about this GI--he was condescending when I was fearful/asking questions about rectal exams and pouches. I cannot even begin to imagine how he will react when I start asking for alternative antibiotics for the first trimester and making sure he uses a pediatric scope for the pouch. Any sort of medical problem takes my anxiety sky high, I know I am going to freak out during a scope if I am awake to see it. I know you guys also are not therapists, but does anyone else suffer from this kind of medical anxiety after UC and surgeries? I just feel like...if the scope reveals something terrible, like a serious problem in the pouch requiring surgery or Crohns...I do not know how I will react, especially right now. It has been such a good 2 years. I hoped this healthy life would last longer. I do not want to do the scope for those reasons, but I do understand (deep down, mentally) that if something is wrong, I need to know, and the sooner the better.

However, another part of me feels pretty sure that this is pouchitis, and if it is pouchitis, I don't really think a scope is needed at the moment. Would it be stupid to want to try antibiotics first? To see if it responds?

I know I am asking a lot of questions, but the truth is that I don't have anyone else to ask, and I don't know the right choices to make. I have talked to my husband, to my mother (who has RA and also a doctorate in nursing), my OB...none of them are able to give me a good sense of what I should do. My GI is impossible to reach, and also just did not seem receptive to questions. I tried asking him questions during my first appointment with him--and he kind of just side-stepped and refused to answer.

What would you do? What is the best course of action at this point?

IMHO, probiotics suck as a treatment for the vast majority of the pouchitis afflicted population. If you can tolerate your symptoms and want to try them great, but if not I would go with amoxicillin or better yet xifaxin, which stays in the gut and isn't systemically absorbed, and have an unsedated scope. Unsedated scopes are tolerable, I only get sedation because I can and because I prefer not dealing with the feeling of being a helium balloon that gets blown  up and then flies away.

In addition the cost efficiency of Xifaxin vs. probiotics is much higher. If you are going to spend significant sums on treatment, Xifaxin is the better value higher cost treatment in terms of bang for the buck.

Last edited by CTBarrister

So after reading all of this, it sounds like you may have what I have.  My inter Sphincter muscle is the problem.  I have finally found out why I have so much pain internally.  And I finally found someone who is helping me with the pelvic floor inter sphincter muscle.  Sadly not many GI Drs look into this.  But as someone put on this site we normally tighten down there about right after surgery so we did have accidents.  My muscle is so tight she was shocked. And it hurt so bad having her check it.  She explained that the muscle won’t relax and stays squeezed 24/7 and is surprised I can even go to the bathroom.  So for starts I have to change my diet.  And I have exercises for the outside core of my muscles down there.  She said I was so weak.  Usually after doing all these exercises my muscle might go right into where it needs to be.  It’s like the inside muscles are doing what the outside muscles are suppose to be doing.  (Butt, check, stomach and abdomen muscles).  I was so shocked when she explained it all.  It made so much since.  And I had my first surgery 10 years ago yesterday.  So for years I have been tightening that internal sphincter muscle.  

I am her to help if you want to send me a pm.  I’m slowly going to get better.  And I am so grateful I have found someone who can explain all this pain. And it all makes since.  I don’t think the GI Drs think about our pelvic floor muscles at all.  I truly think that is part of your problem.  She did give me an exercise to do on the bathroom while trying to go.  I can tell you in a pm.  Hard to explain it all on here.

I truly hope this helps you out.  Also your OB/GYN might really be a lot of help with this matter.  She would no best about the muscles down there. Good Luck.

I had my very first pouchoscopy a few weeks ago. I was very undecided about having it unsedated vs sedated, it took me months to decide. Finally, I decided to have it unsedated, and I am glad I did. Two nurses and my surgeon were there, and they were very professional. It was the right choice. Can you get a scope with your surgeon, if you don’t have a good relationship with this GI?

@CTBarrister she is pregnant and this is her first trimester. Using any antibiotics without empirical evidence for being safe during first trimester is a risk.

She might lose some money on probiotics, so what? I think it is totally irrelevant if she can afford them. That much money means NOTHING compared to taking risks with the health of that little person to whom she might one day have to explain why she took those risks with their health, in case they develop a disease with lifelong consequences.

When I was pregnant, I had a UC flare from the beginning, and the doctors were saying mesalamine is safe. Yet, there was not even one study following up on the kids who were exposed to mesalamine during pregnancy. I waited until the end of first trimester to take mesalamine, and sometimes wish I waited longer as my kids grows up.

@LizAdair posted:

I. He also said no to Cipro and okay'd Flagyl--although when I suggested doing an alternative antibiotic, like amoxicillan, he said that would be even better. I actually forgot to ask him about the high dose VSL, but I will probably just hold off on taking it and bring a packet with me to my first appointment so he can actually look it over in person

@Elif I was specifically responding to this post.  She spoke to her doctor who presumably knows she is pregnant and commented on the alternative treatment options she presented.  Almost every one of 4 pouch specialists I have had think very little of VSL3 or Visbiome as a treatment for active pouchitis.  The bottom line is whether the symptoms are tolerable, such that she can fool around and experiment as is being suggested here.  If someone who is pregnant has intolerable active pouchitis I would be less than enthusiastic about recommending probiotics as a treatment.

I am also not appreciating what the risk would be in using Xifaxin which is not systemically absorbed and stays in the gut.

Last edited by CTBarrister

I think everything becomes more complex with a pouch and an otherwise stellar ob/gyn may not know exactly how to handle gyn issues in the setting of our altered anatomy. They do, however, know which antibiotics, imaging studies and procedures (e.g. scopes) are safe during each trimester of pregnancy so I would figure out what your GI doc and you want to do (empiric treatment with abx vs scope vs watch and wait) and get the ok from your OB. You don’t need to figure this out on your own or with the help of the peanut gallery (myself included, of course ;-)

The actual pregnancy recommendation for Xifaxan starts “consider avoiding use in 1st trimester, otherwise may use during pregnancy.” It goes on to describe the lack of human data, but that animal data at very high doses caused 1st trimester issues. Pouch2021 is quite right to suggest that the peanut gallery here is not a substitute for qualified medical advice.

I appreciate everyone's responses. Thank you.

Naturally, I fall somewhere in-between all the opinions. I do not want to take any medication without my OB's approval and the approval of a GI. I would prefer not to take any meds at all--which is what I did in my last pregnancy with a pouch and what I have done for the majority of my time with a pouch.

However, this pain--though it seems mild by old UC standards--is not really livable. By the end of the day, (because it is worse at night) I am really in a good bit of pain--to the point that I don't want to get up and do anything because walking, going from sitting to standing and vice versa makes it worse. Besides that, it is likely that pouchitis or whatever else could be going on would possibly be dangerous for the baby as well. As my husband said yesterday, the stress alone and my (currently) unusual eating habits have to be considered as well. How healthy is that for a growing baby, you know? I will try VSL as long as it is okay'd by my OB, but I did have a hard time even taking Floraster, so I am a bit skeptical as to how much help any probiotic would be right now. The Kefir does not seem to cause any issues, so I will continue to drink that daily.

My plan is to call the GI's office today, and assuming they answer (which is a little iffy with this office) to pass along a message to the doctor asking him if he would rather prescribe an antibiotic now for pouchitis or wait and do a scope/meet with me/telehealth appointment first. I will defer to his expertise, BUT I will say that I plan to be very, very firm about my timeline here. If he wants to do a scope before treatment, then I want to do it ASAP, some time this week. I cannot wait around in pain longer than that. My surgeon is too far away to be much help, but I have sent my records from surgeries to another surgeon's office here in the city. The Referral Officer there had already said they could schedule me as soon as they had records; so, if that ends up being the quicker route, that is what I will do. (Hoping it doesn't piss off the GI. But...again, speed of reply/help and empathy are big needs for me in a doctor.)

My biggest question right now (besides, of course, what is wrong and whether or not I need a scope before treatment, and how quickly I could get treatment or diagnostic scoping, etc.) is: My OB okay'd flagyl, but up until recently flagyl was considered dangerous during the first trimester. Some women online even claim it caused miscarriages. The data is really sketchy. Older data says it is dangerous--newer data says it is not and that benefit outweighs risk. I would rather not take it, just in case. I would feel more comfortable with amoxicillian, which has long been considered safe during pregnancy. Has anyone here ever treated pouchitis with that antibiotic?

I plan to run it by the GI today in my message, but I am afraid he will say no--because it isn't considered to be a treatment for pouchitis. Obviously, people are given it for pouchitis, though...and if it is safer than flagyl in the first trimster, I don't know that I see the harm. At any rate, I would prefer to try amox first, particularly if the GI wants me to wait for a scope. If it doesn't work, we could always reassess.

Liz- I have used amoxicillin and it was effective in treating my pouchitis, but being a man, I have never been pregnant or used it when pregnant. Although my prior thoughts on the subject were shot down, it is or should be common sense that an antibiotic that is not systemically absorbed (xifaxin) is likely to be less risky, if not risk free, than an antibiotic that is absorbed systemically (flagyl and amoxicillin).

That being said, and apparently I have to add this caveat to my posts here although it should also be obvious or common sense, any suggestion I post here is for the express purpose of giving you ideas to discuss with your doctor and not to act upon on your own. Obviously, these antibiotics cannot be obtained without a scrip from your doctor, anyway. This caveat of running my suggestions by your doctor shall apply to any post I make on any suggestion I make on this board. All posters here are anonymous and we do not know their medical histories as do their doctors.

Good luck with resolving this tricky issue. From your last post it sounds like your pouchitis is similar to mine when not treated.

Last edited by CTBarrister

I am glad to here amox worked for you! That gives me some hope. I was able to get a message to the GI's scheduler (and sent a message through the patient portal) asking about options, so I am hopeful that we will figure out a plan of action today. I am also thinking of asking about Augmentin (which I know is basically amox with increased effectiveness) for pouchitis as well--

amended to add they called back pretty quickly and the GI doesn't want to treat without doing the scope. I am not particularly happy about that--but my reasons are related I'm sure to my fear that the scope will reveal something untreatable or requiring surgery. I really hope that's not the case. If it is just a case of pouchitis, then I don't know that a pouchoscopy is even needed in the first place. Either way, here we are. I go in for the scope on Thursday. I will let you all know what happens.

Like I said, I appreciate everyone's feedback! It is just good to know that I can get immediate help/responses from other people who intimately understand my situation.

Liz, FWIW I also used Augmentin with good results. Regarding the pouchoscopy, I think it's a good idea if you haven't had one in a while for diagnostic and treatment purposes. It does help to know where the inflammation is and what they are dealing with exactly. In my case it's mostly at my J pouch inlet. This area seems to be the most resistant to treatment in long term pouches like mine. We mostly effectively treated the inflammation elsewhere. Good luck with it.

Updates:

I had the pouchoscopy, unsedated for the first time, and it was okay. I did struggle to do the enema prep because of pain with insertion (which I did not experience last time I had a scope with the pouch and used enemas, so I don't know what the problem is there.)

The results are positive. No inflammation in the pouch--no sign of pouchitis or C-diff, no swelling, and no strictures. Lots of nice pink, healthy tissue.

So, the good news is that there is nothing seriously wrong. My symptoms have improved so that the pressure is gone, and I am emptying a little easier.

However, I still am not able to pass gas normally. It doesn't really cause much pain, but it is a strange, new annoyance. I have not dealt with that since takedown (and even then I could pass gas on the toliet with a bm...now I can only do that rarely. No idea why, since there is nothing obviously wrong in the pouch.)

I do not have more gas than normal, but it is more difficult to pass. I also still cannot seem to empty with complete, normal ease. I am hoping that I continue to improve with time though, assuming it is somewhat related to the mushrooms. The GI did say there was some fibrous residue in the pouch--which, since I have been eating a very low-fiber diet for the past few weeks, is strange. I am still eating things like cooked onions and herbs/seasonings in food, and I really, really don't want to have to cut those out of my diet too. I love veggies...sucks to have to cut everything out.

Seems like the only theory right now is pregnancy constipation caused by the ramped up progesterone production during pregnancy. Except, of course, my constipation is worsened by fiber. Most pregnant women are told to eat fiber for constipation. Not me. It is weird that pouches are so unlike colons in that way?? It does seem to make since. My symptoms started right around the time I conceived, before I even knew I WAS pregnant.

Because there's nothing "wrong" with the pouch, I was just told to eat a low-res diet and wait it out. I am thankful that there's nothing seriously wrong. I am also thankful I don't have to take an antibiotic during pregnancy or have surgery. However, I am a little disheartened that there is no real diagnosis or treatment. I have been eating pretty low-res for weeks, and while I have improved, the improvement is not 100% yet.

Thanks for all your comments. I'll try to update if anything else comes up.

Last edited by LizAdair

I'm glad there doesn't seem to be anything awful going on. If you've been straining to try to pass gas that might explain the painful enema insertion. Folks have described a bunch of positions, contortions, and maneuvers to facilitate passing gas (on and off the toilet). My favorite name for this is bathroom yoga, coined by one of our wittier members. You might try searching for some of those posts and seeing if any of that helps. Good luck!

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×