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Does anyone else have this kind of pouchitis?

It's like I was kicked in the tailbone from the right butt cheek. The pain is awful. My bowel movement consistency is normal and there's no blood. It's just pain. Sometimes NSAIDS help, sometimes they don't.

For years I controlled my pouchitis with Flagyl. Antibiotics usually take this away. Amoxicillin does, too.

I switched to Visbiome until recently I missed it. I haven't been able to catch up. THe pain is worse this time than other times. What is this?

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Oh dehydration? I am probably dehydrated. The weather has been very dry here and I'm bad about remembering to drink water. I'll get on that ASAP.

Update: it's 8 hours later and I've been pounding electrolyte drinks and I took ibuprofen and I'm not hurting now. Maybe it was the meds but maybe the hydration helped. I'll know in the morning as I keep drinking.

Last edited by GinaPouchtastic

Just posting an update. So ... i am not 100% sure of this but after 4 days the flagyl didn't help. So I started to wonder some stuff.

I am also currently in physical therapy for a lumbar disc bulge (and a cervical spinal bulge, too) which is like a pre-herniated disc. I found this out about a month ago and it is possible the tailbone pain is from that, and not the pouch. I've been having problems in it's been difficult, I'm constipated, but the stool isn't particularly dense. It's basically it's normal consistency but difficult to get it out.

I had  much less pain when I did more exercises from PT for my lower back. I'd been focusing mostly on my upper and mid back because there was more pain there initially than the lumbar but now the lumbar is the one that hurts, probably because I was ignoring it for the upper back. After a few days of focusing on that, I feel a lot better. Still constipated but the tailbone feels 99% normal.

I feel like I am a living construction project...tightening one bolt loosens another, and tightening that one loosens another one. At some point I'll be all screwed back together...maybe,...

Last edited by GinaPouchtastic

Hi @GinaPouchtastic, a stricture is just a "narrowing" of any bodily passageway. In our (J Pouchers') case, it could be our anus that is constricted because solid stool is not passing through the opening enough to keep it stretched out. As a result, the opening gets tiny.  Anyway, you seem to have a lot going on right now and I feel for you. I am glad that your tailbone is 99% better. One theory I had for that hurting was that perhaps you were not emptying your pouch enough or you chronically had a lot of gas in your pouch and this can push against the tailbone. (If I understand the anatomy of J pouches correctly, they sit right up against the tailbone or quite near it.) I hope that you feel better every day, regardless of whether you figure out what is causing it!

Thanks for your very empathetic reply.

After about 6 days of Flagyl 500mg twice a day I finally feel better and am pooping normally again. The results from my stool test finally came up and the calprotectin level was high but not high enough to be UC again or Crohns.

I'm doing physical therapy for my back and I told the PT about the butt pain and she's been doing some spinal compression and massage with me that has helped. Another thing I need to stop doing is  bending over so much when squatting is a possible alternate move.

Apparently a herniated disc can also create the same symptoms so I guess if you're reading this thread because you've got the same symptoms, get your lumbar spine checked out too. Maybe your pouch isn't 100% to blame.

I just posted this whole thing for the benefit of others and also to come back to, to remind myself that things get better.

Annoying but the pain is back. It seemed to correspond to a few things.

It's a week after I went from 1000 mg of Flagyl to 500. So maybe recurrent, maybe not.

Last night I also did a ton of lower back stretches that could have exacerbated the sciatic/disc bulge thing I have going on.

Yesterday I also took a medication called Risperidone that I use for panic attacks. I'm not on a high dose...only 1/4 of a 0.25mg pill. It takes the panic attack away within an hour, but I had wondered if it was the cause of the tailbone pain the first time I was on it. It started around when I started the drug. I'd been off of it for the whole duration of feeling better, and it came back the next morning after taking one dose.

My period is also starting today which sometimes corresponds with GI symptoms.

So the mystery continues. Is it pouchitis? Is it my period? Is it a Risperidone side effect? Is it sciatica? I don't know anymore. I think it will be a few months of trying controlled experiments before I know the answer.

The fun continues. @Scott F @PouchLogic and @RHolt Any thoughts of yours would be greatly helpful if you have any.

I finally went to the ED to get evaluated because I was sick of begging for an appointment in our understaffed medical system. The CT scan found a stricture and pouchitis. Pouchitis isn't responding to flagyl and so they added cipro but I still don't feel better yet. Pain is still there. I felt temporary relief after they gave me IV fluids and some non-steroidal pain reliever called toradol in my IV. But it's back 8 hours after discharge. So this really sucks.

Real serious questions...

1. Is "Stress" really the cause of this stuff? Why is this happening NOW of all times, when I'm trying to adopt a child and move on with my life? I've been fine for 11 years. Why now??? I cannot live in a bubble. I already quit my job to reduce stress last fall. Am I supposed to just sit in my house quietly all day with no friends, children, family relationships, or any of the commitments that make life worth living?

2. What are the signs of pouchitis that has the potential to become treatment refractory? I am tempted to just tell them to take the pouch and save me 10 more years of medication trials. This is what my UC was like -- nothing they threw at it worked, hence the surgery. I CANNOT emotionally tolerate another round of that life. I feel like my dreams of motherhood are just slipping through my fingers. I had a vision of a normal life that almost materialized but it isn't seeming to go that way now and I feel like my heart has been ripped out.

Last edited by GinaPouchtastic

Hi GinaPouchtastic---at least now you know what is going on. I am sorry that your pain is continuing. I am sure that we J-pouchers will have different opinions about stress causing problems. For me, to be honest, it does not seem to be related to any problems I have with my pouch. Right before and throughout the pandemic, my work life became incredibly stressful and my pouch has been on its best behavior during this time. I don't know much about treatment-resistent pouchitis. I have made some behavior, dietary, and supplement changes that I think have really helped me with my J-pouch and I will tell you about them.

  • First, I eat a Nancy's probiotic yogurt for breakfast nearly everyday. This yogurt has 41 billion live probiotics per 6 oz serving and this seems to help me as much as taking the largest dose of VSL #3, which I cannot afford.
  • I have added lots of veggies to my diet and have followed the low FODMAP diet, for the most part (Monash U has a good app you can purchase to help guide you). Sometimes I chop up a bunch of eggplant, zucchini, yellow squash, and peppers and toss them in olive oil, sprinkle with kosher salt, and roast them at 425F for about 15 min or so. I keep them on hand to snack on or add to salads or use as a side.
  • I eat a big salad for dinner about 4-5 nights a week. I add sliced chicken on top for protein.
  • I add fermented foods to my diet. Nearly every day, I make a grilled swiss cheese sandwich for lunch and will add sauerkraut in between the 2 slices of cheese. It is yummy.
  • I exercise regularly. I do yoga online and Pilates in person once a week, do an elliptical machine, or go for a good (1.5-3 mile) walk routinely. When I walk outside, I try to breathe the air deeply.
  • I take these supplements: Vit D, magnesium, fish oil, CBD (25 mg gummies--one in the morning and one at night). At bedtime, I take 2 immodium, but to be honest I am not sure they help.
  • When I feel my pouch or my gut being upset, I take additional supplements: Dysbiocide and FC Cidal, or Neem or any combination of them. I may also add pepto bismol just to calm things down (the bismuth has some antibacterial activity, I believe).  When my gut is off, I also rest and take care of myself. I may use a heating pad and massage my belly deeply and let gas out. The deep massage is also a prevention just in case the intestinal upset is a potential blockage.

I know that I am fortunate beause I am able to work from home and use my bidet routinely (it really helps), my kids are grown, and I have financial security, which many Americans lack. This reduces a lot of stress. I also know that everyone's gut and body make up is different. What works for me may not work for you. We all have to make the journey of finding what works for us. Even following my new routines, I can still have flare-ups and it makes me wonder if I am just in a mostly-lucky phase and none of these changes really matter! But I have not had to use antibiotics for treatment for about 8-9 years. My pouch is mostly okay.

Re: your stricture, I had a friend who recently had a very painful fissure in her anus because of the straining to get even the soft stool of the J-pouch out. She has had to get botox injections in her anus (under sedation!) to help ease the situation and allow the fissure to heal. I am exploring (and plan to ask my GI doctor) if we can routinely dilate our anus with the smallest dilator tool used for vaginas.  There is a website called Intimate Rose ( that I searched to find a great tool for pelvic floor therapy (which I highly recommend you explore). I am wondering if routine dilation is a way to prevent strictures/fissures. I will post more on this site when I learn more about it.

Lastly--and I am sorry it took me this long--I want to acknowledge the real emotional pain you are feeling. You had hoped for a more normal life after living with UC and now you are legitimately worried that you will be back to square one even with the J-pouch. There are definitely people in this group who have their pouches removed and go on with fulfilling lives with an ostomy bag. I think that is a personal decision and I can see that if you go for a long time feeling miserable with your pouch and have tried lots of options, it could be a choice you would make!

Sorry for the long post. I thought it may be helpful to share my routines and changes I have made that you could try, if you haven't already. My GI doctor says that basically all GI inflammatory issues seem to be "dysbiosis". You can address the imbalance of the good and bad bacteria in your gut through different ways. I think some of my changes are toward adding the good bacteria--adding lots of veggies, probiotics through yogurt, eating fermented food, using herbal treatments if things seem off and exercising. The other side of the coin is killing off the bad bacteria with antibiotics. I am trying to avoid the antibiotics, but would not hesitate to use them if I needed them.

Mostly, I hope that you figure out what works for you so that you are not suffering. Having a chronic pouchitis/stricture/tailbone pain is not a fun way to live and can impact how you feel about your daily life.

I don’t think stress has much to do with it at all. That stricture could be significant. Do you know where it is? Flagyl and Cipro won’t help a stricture, so you need to find out if it can/should be dilated. Do you have a regular  gastroenterologist that you trust?

The stricture could have been caused by chronic inflammation, so it’s important to pay attention to the pouchitis even as other things distract you.

Last edited by Scott F

@Scott F Right now my GI doc isn't saying she wants to do a scope but I'm trying really hard to get an office visit with her soon. The hospital recommended it strongly so I can ask about those things.

I had really good control of my pouchitis using visbiome for a year and I lost control of it around the time I had to take two rounds of Amoxicillin for a tooth abscess. I stopped my Visbiome while taking the Amoxicillin and during that time my pouch was super great. But when that got resolved and I went back on Visbiome I had about a week of control and then it all went to hell. Flagyl hasn't worked, so now she's trying Cipro+Flagyl. I had asked her a long time ago if pouchitis ever becomes resistant to antibiotics when it used to work, and she was like "No not really, I don't see that." And here we are, it seems like it's happening exactly as I predicted. Maybe the whole thing got messed up by the Amoxicillin and it changed my microbiome permanently. It seems like that sort of question can't be answered by currently available diagnostic tools. I used to be a molecular biologist and have done microbiome work in the lab so I know we're kinda far behind in getting what's in the research labs into the hospitals. I wish so much that I could go back to the lab and test myself to answer these questions.


Thank you for your input. I actually have a pretty similar lifestyle as you do except i don't really do FODMAP. My diet leans more vegetarian. I don't drink, or eat white sugar or white flour. I limit saturated fats, too. Sometimes I eat chicken. We do eat a lot of eggs so we're not really true vegetarians. I guess I could try FODMAP but to my knowledge I'd probably need to get one of those breath tests done where I can see WHICH of the FODMAP compounds I can't tolerate so that I"m not cutting out foods unnecessarily. When I had UC I went on a lot of crash diets and hyper-restrictive fads that never worked and it gave me an eating disorder so I have to be very very careful how much restricting I do for my mental health.

You are very knowledgeable about the microbiome already as a microbiologist and it seems you have had good success on Visbiome. Your diet sounds really sound, too, so it seems you are doing a lot on the non-medication front to keep yourself healthy. I agree with ScottF that it really good be the stricture that is causing a lot of your problems.

One thing to know about FODMAP is that it is not about cutting out foods, but rather limiting the intake of foods that are causing problems for you. (It is "low" FODMAP, not no FODMAP).  I do not want a gassy J pouch, so I try to really decrease intake of foods that may cause a lot of gas for me, whether it is the hydrogen gas of FODMAPs or just regular old gas! The biggest change I have made is to cook with the green parts of scallions or leeks in place of white onions. It still adds an onion flavor to the dish, but eliminates the chance of onions making me gassy. I agree with you that you don't want to get too restrictive on any diet---it takes away a lot of the joy of life. I do eat sugar, drink alcohol, and eat things baked with white flour and it has not been a problem for me. All in moderation!

@RHolt That is encouraging that you can even eat white flour without issues. My crash diets during UC made me terrified of carbs and getting to where I can eat a whole grain vegetarian diet was a big emotional hurdle. I always had this lingering guilt that bread = evil. But avoiding gas seems like a good strategy. My pouch does get gassy. My husband is Indian and we make a lot of curry and onions are such an integral part of that. I wonder how I'd deal with eliminating onions. haha! That sounds harder than quitting sugar at this point! =)

I'll read up on FODMAP and see if I can figure out something.

So I went back to the hospital. Pain is worse. I also have fatty liver disease somehow even though I don't have any of the risk factors. Maybe it's all those years of colitis meds and antibiotics? Maybe the one time in grad school where maybe ate a little too much fatty food and the years before that where we drank a little too much? I certainly wasn't pounding the junk food and booze as much as my friends but maybe I'm more fragile. I've had good eating habits for three years now. Maybe my exercise could be more intense. Maybe it's too late.

I'm also starting to see pinkish stool. I have a canker sore. This feels like ulcerative colitis all over again.

I think we have to call off our adoption plans. I have to pull away from my family. I had a hard relationship with them anyway because of my UC. They always acted like my personality was the cause of the UC...I was so sensitive, I was so emotional, I couldn't handle stress. That's why I had it. And now it's back. Maybe they were right all along. But either way I'm really ashamed of this because I thought I had my health in a really good place. What a fool was I to claim victory over this monster.

This is NOT your fault and you are not a failure. I know it is true but I have trouble believing it for myself when I am not well, probably because my family's beliefs are a lot like yours. Instead of beating ourselves up, we should cut ourselves some slack. Chronic conditions are difficult and depressing. We were handed this through a karmic chain that started long before we were born. It is totally OK to release unnecessary things that are adding extra stress. The illness is a sign that we need to pay attention to what our bodies are saying and take care of ourselves like a good friend would.

@Sara Marie Thank you for your kind words. You're absolutely right and people are kinda awful with blaming the victim. It's quite sad.

I am really scared of what is coming next. I see the doctor's NP tomorrow because that was the earliest they could get me in. Doctor is too booked out. With the fatty liver thing, if it's medication caused, then I don't know how I will solve that seeing as how I need a bunch of heavy medications to get the pouch under control. Apparently I am on the short end of the stick....the main drugs that cause liver damage are antibiotics, corticosteroids, antidepressants, and antipsychotics. All drugs I take or have taken or might need to use. After spending 7 years on steroids during the UC hell, I cannot tolerate prednisone at all. Since Flagyl and Cipro aren't working, i fear this is the next line of defense. And then what will happen to me?

If there's a procedure for dealing with the stricture, that's good, except I'll have to go on anaesthesia then, which ... liver. And will it hold it off forever so that I know I can safely adopt a child and finally stop worrying about my own stupid health? Nope.

The weirdest thing is, I have none of the classic symptoms of pouchitis but they keep calling it pouchitis. No diarrhea, no high frequency, no cramping, no blood, no itchy butthole, etc.. Only pain. And TYLENOL takes the pain away? Weird. I have never used tylenol when I had UC. It's not recommended by anybody. I'm sure it's terrible for my liver. But the pain is unbearable. And I can't poop. If I go to this office visit tomorrow and they just tell me to go home and keep living this way, I'll scream. I'm pretty sure not being able to poop without like 4 consecutive enema is an emergency, right?

I can't even keep my emotions together right now. Our last visit with the social worker for the adoption is this wednesday. The timing is so bad. We're going to have to tell them that I'm sick. They might fail us. We've already told our family we're adopting. If we have to say we're not, so many people are going to be disappointed and they will all blame me. My husband's health is flawless. THey'll all know why we failed.

@GinaPouchtastic, you are not to blame for your illness. People who aren't going through the same suffering as others love to blame the person themselves for what is happening to them. They say it is caused by stress, but honestly, it seems the stress you are having is caused by the illness. It really seems like you need to get your stricture addressed. That might be 95% of your problem!

I have a feeling the empathy you are building through this suffering will make you a really good parent. I have some faith that parenting is going to happen for you. Right now seems hard, with your pouch issues, but I think you will get to a resolution and feel better about the future.

So this thing just got way worse.

My gastroenterologist admitted me from my appointment because I was super sick, in pain, and couldn't poop at all.

Long story short after an MRI and a flex-sig scope and an x ray no obstruction or stricture was found. I don't actually even have any pouchitis. My mucosa is actually significantly improved over my scope a year ago.

Yet...there are some weird anatomical features of my pouch they can't quite explain. For one it has a weird shape. They found some kind of extra lumen that formed behind my pouch near my tailbone. Like a second mini pouch that goes nowhere about an inch deep. There's a trivial amount of fluid on the outside of the pouch that the doctors can't all agree on whether it is clinically significant. Worst of all even since the massive colonic style irrigation they did to clean me out for the scope I STILL CANT POOP and I STILL have the stupid tailbone pain.

I'm still in the hospital and tomorrow may bring a barium enema and a needle aspiration of the fluid in question to culture it.

At this point it looks like my two potential treatment options are to spend a few years with a pelvic floor PT and laxatives and enemas....or....give up the pouch. I hate to even put that out into the universe and the doctors see it as a last resort but it would crush me to have to remove a pouch that has no IBD in it.

I read multiple threads on here about how people deal with constipation in the pouch and this seems standard.

Nevertheless I feel angry and depressed and hopeless.

This sounds like a pouch sinus, at least if it’s connected to the main pouch. Bo Shen has tried some treatment methods for sinuses, but I don’t know how well they have worked. I’m sorry you’re still struggling.

People sometimes get good results with pelvic floor PT. Why not give it a try and see how the reality measures up to the prospect of it?

Another update just for completion.

The GI doc is calling this thing a "fistula-like" lumen and they disagree that this is a pouch sinus. He isn't even fully committed to the idea that this is a fistula either. He tells me the lumen probably gets stool stuck in it. And that it is residual damage from inflammation which is now interfering with the evacuation process that once worked so He wants me to take laxatives and follow with a pelvic floor specialist. He also said there is fluid in the area that they want to sample with a needle to make sure it's not infected.

This whole thing is very weird because the internal medicine team and the GI team keep telling me slightly different things so this might all change tomorrow. I would like to get a second opinion from one of the j pouch gurus at Columbia or CC. I don't trust their diagnosis but I'm going to at least give it a try for a while.

GinaPouchtastic, I have a friend who developed a fistula in her J pouch and her GI doctor put her on immune modulating therapy, suspecting that ,even though she was diagnosed with UC and that is why she had her colon removed, she really had Crohns and it was impacting her J pouch. She said she is doing MUCH better on the immne modulating drug (I cannot remember which one she is taking, but it is a common one for tamping down IBD. I hope the doctors figure out exactly what is going on. Re: your emotional health, is there a counselor you can talk to? Sounds like it would be helpful. You are going through a lot.

You're right to want to get to a place where they treat a lot of j-pouch complications. I just got off the Cleveland Clinic webinar where Surgeon Tracy Hill discussed management of complications like sinus which she can treat to preserve the pouch.  At least they'd know what they were looking at.  Cleveland would be a good bet.    Or Columbia.  Dr. Shen is hard to get by phone. Emailing his office works best. PM if you need that contact.

Final (I hope) update to this thread.

They are taking a conservative approach. I drew a picture of the problem based on the doctors sketch for me.

The problem is either a sinus or a fistula but they cant tell if the thing is connected to the fluid pocket or not. Either way they are reluctant to operate because im otherwise healthy and the laxatives and fluids have been effective the last few days at keeping me flowing okay. So they recommended a trial of pelvic floor therapy to see if I can learn to work around the problem over time.

They said no evidence of inflammation anywhere so if I'm stable on visbiome just keep using it since pouchitis was never the problem. It was the fluid collection (which they say has been there for years based on past imaging) and stool getting stuck due to a random change in the shape of the pouch since 2011. It's not really a J anymore.

I didn't get any specific diet recommendations. Just stay hydrated and eat what works for you, they said. The hydration seems more important than the food.

If the pelvic floor treatment doesn't work then they did say there are surgical options we can explore but they think the risks outweigh the benefits right now. Even draining the fluid seemed risky to them since there's no evidence it is infected and draining it could introduce infection or more scar tissue.

So home I go with senna and miralax and hopefully the PT works.

Thank you all for your feedback and support through this. I hope I stay quiet for a while!



Images (1)
  • Capture+_2023-03-09-15-17-37: Drawing of pouch abnormality
Last edited by GinaPouchtastic

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