Tailbone pain as the main symptom? What is this?

Some people have reported tailbone pain as a symptom of an abscess or pouch leak. I had pretty significant tailbone tenderness for over a year, but it went away on its own. Sitting down on a bicycle seat was uncomfortable, and getting off the seat was very painful.

Interesting...abscess or pouch leak...that could be. Unfortunately the gastroenterology department where I go (Penn Medicine) is jammed out until next year so I think I have to switch doctors if I hope to see anybody.

I've attached a journal article by Dr Shen about complications and "Anastomotic Pouch Sinus" mentions that tailbone pain is a clinical manifestation of this sometimes. I don't have any of the symptoms of an abcsess, pouchitis, or crohns according to this paper.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6384396/

It might be worth trying a course of antibiotics, in case this is an unusual sign of pouchitis.

My GI doc called in a Flagyl script. I hope it works. Otherwise it means following up with my surgeon who I have not seen in 12 years and is 8 hours from me now.

I get the same symptoms when my pouchitis flares bad, back/tailbone pain. Usually antibiotics and making sure I'm hydrated sort it out but I try not to let it get that far. Being very dehydrated I also get similar symptoms but they go away with hydration.

Good luck

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.

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 emptying...as 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,...

If you’re struggling to empty your pouch, but the stool isn’t dense then it could be something like a stricture. I wouldn’t call it constipation, which could lead to treating the wrong thing. Have you had a pouchoscopy recently?

I had one last year and it looked fine.

What is the treatment for a stricture?

Strictures generally need to be dilated. They aren’t the only cause of difficulty emptying the pouch, though. Pelvic floor dysfunction can do it, as well as other things.

I am going through a really really tough time right now so I am sure it's some kind of muscle dysfunction related to the stress. I'll ask my doc. Thank yoU!

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.

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 (https://www.intimaterose.com/) 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.

@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.

@RHolt

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.