Hello everyone! I have a question that I hope I can get some insight on. I had a complete colectomy in 2010 and have a J pouch. I am currently 12 weeks pregnant and have had pouchitis twice in the last month which landed me in the hospital both times for a week. Before I got pregnant since 2010 I have had pouchitis over 15 times. I have read a lot about anabiotics being used but I have never been put on them and I find that sort of odd . I see my new G.I. doctor on Friday and I'm hoping he can put me on a regimen that can help because since I am pregnant I am more prone to getting it due to my uterus expanding and causing inflammation in my J pouch. I have tried my hardest to stay away from narcotic pain medication but sometimes the pain is so excruciating I don't have a choice. But thankfully it's always in the hospital , the baby is monitored, and when I get sent home I'm better and don't need any more pain meds. I was also notified by the hospital doctor in charge of my care That there have been studies conducted about people with chronic pouchitis being treated with probiotics. Has anyone experienced this and what was the treatment you were given? I have six months to go before I give birth and I do not want to spend my whole pregnancy in the hospital with pouchitis.
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Hi Krista,
I'm sorry that you are suffering...I've been there, too! I went through 2 pregnancies successfully with a Jpouch and now have two boys (ages 13 and 11). I had my first bout of pouchitis in the first weeks of my first pregnancy. My UNconfirmed theory is that the pregnancy changed the shape of my pouch and caused bacteria to linger (I am petite and had HUGE babies). Gas no longer exits unless I lay sideways---but it did before. Who knows? Anyway, I was put on all kinds of antibiotics - starting with the "light weights" moving up to the "big guns." I think I might have settled on Cipro, but I don't remember. At that time, there were no prescription probiotics (like VSL3). My babies were born healthy and are thriving! (My 13 year old just hit 6 feet tall!!!) I have had chronic pouchitis ever since my first pregnancy - Mostly just severely watery stools with times of dangerous dehydration. No fever and only gas pain. I did try VSL3 when it became available, years after I was pregnant. It didn't agree with me and gave me severe diarrhea. I think it is odd that you have had 15 bouts of pouchitis and haven't had any antibiotics... I'm curious as to how your pouchitis is being treated by your doctor? I am not a doctor, but I would want a round of antibiotics and then a follow up with probiotics (VSL3?) to try and prevent a future recurrence. I have had less and less success with antibiotics (overuse), as I have been off and on Cipro and Flagyl for 14 years. So, I moved on to Humira (biologic) - not working. I had a flex sig today, and my doc is suggesting that I might consider removing the pouch and trying again once we confirm that it isn't Chron's (all ulcerations are in pouch). I could then test my theory about the pouch being "crushed" by my uterus! ----But I don't know if I am up for it at this point. I hope this info/experience helps you!!! ---Hang in there and feel better soon! I'm sending good thoughts your way. 
Sorry you are suffering 
What were the reasons that they chose NOT to put you on antibiotics when you were hospitalized? You must have been pretty bad off to need to go to the hospital. Did your GI officially diagnose you with pouchitis in those cases? It won't just get better on it's own without treatment. So, yes, you need to be put on antibiotics if you, in fact, have pouchitis. You will have two options available to you at this point. Augmentin or Flagyl. I was on a low dose of Augmentin my entire pregnancy. Hope you can get some help and relief soon!!
Hey guys. Thanks for all of your comments I appreciate it. In response to one of the questions regarding how my pouchitis was diagnosed it's always the same thing. I go in with nausea and vomiting and severe pain and before I got pregnant they would do CT'S and ultrasounds to rule everything else out and then they just go with pouchitis. While in the hospital they gave me IV fluids, IV nausea and pain medicine, and put me on NPO for a couple days and then slowly increase my diet until I can eat without pain and then I go home. I have never once been offered anabiotics by any of the three hospitals I've been to. I am hoping when I see my new G.I. doctor on Friday they will order a scope to look in my pouch to see what's going on. This last time in the hospital they said by inflammatory markers were extremely elevated whatever that means. that was the first time I've ever heard of that term and the doctor said that most doctors don't order the test but he did. This was at Stanford. Now after reading all your comments I am really confused as to why I've never been offered antibiotics. I will definitely be bringing this up with my doctor on Friday !
On another note I've never had pouchitis that wasn't bad enough to be in the hospital. Every time I get it I'm in excruciating pain and can't eat or drink anything for days. If what I've been having is not pouchitis I will be very angry but I really don't know what else it could be. But I have never been offered antibiotics one time. The doctors ask me if I've ever been given them and I say no and then they choose also to not put me on them. I'm not sure what the reasoning is, but I do know that they always take good care of me when I'm there. I'm just not sure why there haven't been any preventative measures taken especially now that I'm pregnant.
Krista,
Any of the MANY times that I have gone to the ER/Hospital for pouchitis, I am the one who tells the doctor how to treat me (even while pregnant). Then, they go confirm with research or talking to a specialist to confirm what I say. The doctors in the ER/Hospital are meant to treat all emergencies that immediately threaten your life and aren't up to date with information regarding pouchers, healing pouches, and long term care---especially pregnant pouchers. When I was pregnant, I went to a OBGYN who specialized in high risk pregnancies and he was very familiar with IBD. You have a very specialized medical history and should be treated by the best doctor available for GI issues (preferably one at a teaching hospital who is up on all the latest data, medicines, and procedures). Your GI doctor should be treating many people who have pouches, and your OB and your GI doc need to agree on a treatment plan for you. An ER doc or a general OB will not have enough information to treat you with the highest level of care that you and your baby need. I don't know where you live, but I like Dr. Jane Onken at Duke University in North Carolina for my general GI care. You are on the right track being on this website. I would also suggest that you read as much as you can to familiarize yourself with treatments so that you can thoughtfully discuss matters with you specialists and ask lots of questions. I always go in with a list and grill them to understand why they are prescribing what they are choosing. Also, don't be afraid to respectfully disagree or challenge them---you know your body best and it may not always respond as they expect. Good doctors will value your feedback and input - It is a team effort. Good luck!!!
Valerie, I do have a high risk OB and he has been great. My GI dr retired so I had gone to a different one that was HORRIBLE. Wouldnt even spend 2 min with me during an apt and would just send me to surgeons saying he cant help me i need surgery. Idiot. So I was referred to another dr that is in the same office as my old dr. I see him on Friday.
Oh and Im in CA
Update: I saw my new GI Doctor and he too was curious as to why I have never been treated with antibiotics. He also was curious as to why the treating doctors assume pouchitis everytime without doing a scope to confirm. He is a specialist in IBD and is thinking I may have IPS which is Irritable Pouch Syndrome. So we are doing a flex sig to rule out pouchitis and go from there. I have high hopes. My new doc is very thurough.
Krista...so, after reading your symptoms and how they treated you each time in the hospital, it sounds much more like partial obstructions than it does pouchitis. Pouchitis should not affect your ability to eat and cause vomiting like that. The severe pain like that also sounds like an obstruction and not pouchitis. I've been hospitalized too many times to count for partial and full obstructions and the normal protocol is X-rays/CTs, IV fluids, NPO, and pain/anti-nausea meds until it passes (or results in surgery sometimes). Without a scope, I think diagnosing as pouchitis seems very odd as those are classic obstruction symptoms. And again, with a pouchitis diagnosis, the obvious choice is antibiotics. SO GLAD to hear you found a new doctor!! Sounds like he will get to the bottom of your issues!
clz81:
The times before I got pregnant I was given all tests possible and obstruction was ruled out except one time. I feel like the doctors at the hospital see that I'm there so often that they just assume it's pouchitis instead of taking the time to do the necessary tests to check for something else. That's why I'm so glad that my new G.I. doctor ordered the flex sig. He is the only dr (and ive seen a lot) that had ever even mentioned IPD to me. I didn't even know it existed. Also, since I'm pregnant they can't do the normal diagnostic tests to check for an obstruction so that further gives them a reason to just assume it's pouchitis. From what my G.I. doctor said IPD sounds like a pretty good candidate. I have my scope Thursday I will update everyone after I and normal from the sedation LOL. Thank you for all the support everyone!
The times before I got pregnant I was given all tests possible and obstruction was ruled out except one time. I feel like the doctors at the hospital see that I'm there so often that they just assume it's pouchitis instead of taking the time to do the necessary tests to check for something else. That's why I'm so glad that my new G.I. doctor ordered the flex sig. He is the only dr (and ive seen a lot) that had ever even mentioned IPD to me. I didn't even know it existed. Also, since I'm pregnant they can't do the normal diagnostic tests to check for an obstruction so that further gives them a reason to just assume it's pouchitis. From what my G.I. doctor said IPD sounds like a pretty good candidate. I have my scope Thursday I will update everyone after I and normal from the sedation LOL. Thank you for all the support everyone!
Hi Krista...just wondering how your scope went and what the verdict was. Hope all is well now!
Update: I was admitted to the hospital Monday but great news came out of it. I do not have pouchitis. It's Irritable Pouch Syndrome, which for those of you who don't know is pretty much like it sounds. Its like IBS but in the J-pouch. This condition is treatable with a low dose of antidepressants which actually work in the small intestine to slow down the nerve impulses that trigger pain. I am so relieved. Hopefully this will be the end of hospitals every month and I can go back to enjoying my life! Thanks for all the support! I'll keep updates on how treatment is going!
Glad you are doing better. To answer your question about probiotics... I have a 4 year old , 3 year old, and 3 month old. I started taking VSL#3 probiotics since the baby was 1 month old. It cleared up the pouchitis after child birth and got my system back on track. It is ok to use when nursing too and I think it helped the baby get good flora in her system. It is expensive. I got it on amazon. I only used it for about 2 months. It is only for people with uc or crohns.
Good luck!