Tailbone pain as the main symptom? What is this?

@RHolt posted:

@AMB, I signed up for that webinar but it clashed with my ferritin infusion, so I had to miss it. How was it? Did they say they would make a recording available?

I thought it was very good. They said they'd circulate slides.  Haven't seen them yet. Don't think it was recorded.

@GinaPouchtastic posted:

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.

Hi Gina, I never respond to posts but yours tugged at my heart. I too suffered from severe tail bone pain, for almost 2 years. Mine was extreme at times with limited amount of relief from (4) advil  4 times a day. Very upsetting time as was working throughout this nightmare. My journey was similar to yours . Many scopes , x-rays  and scans. No explanation could be found. Suggested pain management, acupuncture, pain patches , etc, all of which I did. Nothing helped, pain only escalated. Truly was desperate.....just as you are now. Just couldn't take any more pain. Decided needed to make a change . Went to new gastro dr @ Beth Isreal Hospital ,Boston. Best decision I ever mad! He too did the scope but went higher up. And there it was .....a big abscess from my leaking pouch, which I had done in 1997. Procedure scheduled to drain abscess right away. Results were immediate ...no more pain . Pouch was not repairable so ended up having to replace it. No issues with new one for over 15 years .  Maybe dr could try scoping higher? You never know.

Wishing you all the best in the hardest of times....

Liz

I never updated, mine is pelvic floor dysfunction. There was a small fluid collection near my tailbone but it has been there. I don't have pain these days now that I've been doing pelvic floor therapy and taking laxatives.

It's interesting that they didn't find your abscess in imaging. I'm glad you found a responsible doctor that did the proper diagnostics. It can be really angering when doctors don't do their jobs. They did "scope up higher" as you say along with multiple abdominal imaging.

Did your abscess cause you to feel sick, too? High white cell count? Fever?

@GinaPouchtastic posted:

I never updated, mine is pelvic floor dysfunction. There was a small fluid collection near my tailbone but it has been there. I don't have pain these days now that I've been doing pelvic floor therapy and taking laxatives.

It's interesting that they didn't find your abscess in imaging. I'm glad you found a responsible doctor that did the proper diagnostics. It can be really angering when doctors don't do their jobs. They did "scope up higher" as you say along with multiple abdominal imaging.

Did your abscess cause you to feel sick, too? High white cell count? Fever?

So glad to hear you doing better. Yes….felt pretty rough. High sed rate don’t remember wbc.  Low grade fever. All is well with that now except  for episodes of pouchitis.