Hi - I've only posted once before, but have been reading many of the discussions - you guys really are all so great. Here's my thing: I've had my jpouch 17 years. I feel like I've done OK with it, but my surgeon has never been entirely thrilled because I go about 10/day, with 2-4 (lately, 6-8) times/night. For the last 6 years I've been getting what I call "flu-things", which involve fevers, headaches, serious fatigue, diarrhea, etc. My surgeon feels they're probably pouchitis, and I've taken levaquin a few times, which helps, I think. I'm currently having another flu-thing that's been going on for about 3-4 weeks, I just started levaquin yesterday, but have a new symptom, that I've never experienced before - it's a dull, aching pain in the lower, front side of my .. um .. crotch, on the right side. After running across abscesses (never ever considered these, and no doctor has ever mentioned the possibility of them), I have to wonder if that could be what's going on, and has possibly been going on all these years? My internist did a slew of labwork, and said if nothing showed (which it usually doesn't, except for a outrageous CRP), we might do a catscan. I'm just wondering ... and you'd think I'd know after all these years, but ... could what I have possibly be an abscess, or does it sound "normal" to have fevers for 3 weeks, headaches, and fatigue - feels just like the flu w/o respiratory involvement - w/pouchitis? If it is an abscess, will the levaquin help it to resolve, so-to-speak? Should there be a rush to get to a dr. and get it checked, or lanced? My next appt. w/my surgeon is March 12th. One last note - 6 years ago at the start of all this, my surgeon did a blood test and told me I had Crohn's. I'm still not convinced of that, because most of the time I do just fine. My husband thinks I'm a mutant - in a loving way, of course. Sometimes, I wonder if he isn't right!

The elevated CRP could mean a lot of things, from pouchitis to Crohn's to something unrelated, since it is a nonspecfic indicator of inflammation. These intermittent fevers are troubling though. Back in the day we'd call them FUO (fever of unknown origin). When fever persists without any evidence of viral or bacterial infection, we think abscess, and yes, they can simmer for years. But, I am not sure I've ever heard of one simmering for nearly two decades.

Most abscesses associated with the j-pouch settle in the presacral area, which would be the very low back, right above your tailbone. Pain in the crotch area can be from an abscessed bartholin gland (but you would feel a painful lump near the vagina) or from irritated nerves arising from the sacrum. It could also be muscle irritation from a deep seated perirectal abscess. It is possible that you have been taking antibiotics just enough to keep this abscess simmering rather than becoming full blown.

A CT scan would show an abscess pocket if there was one...in most cases. Sometimes they are tricky and remain hidden, only to be found on exploratory surgery.

Some questions. Have you ever had your pouchitis confirmed visually with a scope? If not, why not? When you have recurrent pouchitis symptoms, it is sort of important to actually know what you are treating. What blood test did you have that indicated you had Crohn's? If it was IBD serologies (Prometheus test), then it is not diagnostic by itself. But, if you do have Crohn's, then that could explain your symptoms. You may need to be on antibiotics continuously.

Jan

Thank you Jan for your response. Sorry, I wasn't clear (brain fog - another one of my symptoms!)My fevers started in '04, so they've been running off and on for 6 years. The first episode lasted about 4 months! I had many scopes through my 17 pouch years, and they - the biopsies - always show some degree of inflammation. (As a side-note, my surgeon has recently taken a new approach w/pouchers, and feels scoping should not be overdone, i.e., should be done only every 2 years or so rather than yearly or biannually which we previously did). However, I could be feeling perfectly fine and inflammation would be present. I don't recall ever really get one of those "you definitely have pouchitis" confirmations after a scope. Does inflammation = pouchitis? I haven't taken Levaquin very often, maybe 3-4 times at most, only when I get the fevers and there seems to be some pouch symptoms such as diarrhea, frequency, etc. involved. It does seem to help, or else the fevers just kind of burn out on their own, who really knows. My surgeon did run the prometheus test in '04, which he said showed Crohn's. So, how does Crohn's actually get diagnosed, then? After all the scopes, biopsies, etc., shouldn't it be clear, in a somewhat muddy way, what is going on in there? Interesting about the sacral abscess - in the past, I've had "tail bone" achiness, which was diagnosed as sacroiliitis through xrays and symptoms. Haven't had pain in that area much anymore, seemed to have outgrown it. Thanks again - your insight is invaluable.

All pouches have some level of inflammation simply due to the fact that the ileum is being used as a reservoir and it does not necessarily mean there is pouchitis. So, it is a matter of degree. I think that most up-to-date docs now go with the notion that annual scopes are unnecessary unless there are specific problems or past questionable biopsies, because more frequent scopes do not improve outcomes and do pose some risk. You can have pouchitis symptoms without actual pouchitis because bacterial overgrowth would cause similar symptoms.

Fever is not a regular symptom of pouchitis, but does occur in many people, and fever is also a symptom of active IBD. The Prometheus test in 2004 was not as accurate as it is now, and even now, it is not 100%, and needs to be considered with other evidence. Have you had a small bowel series or camera pill endoscopy to rule out or diagnose Crohn's? I absolutely would not rely on IBD serology tests for a diagnosis. Interesting that you mention sacroiliitis, since that is a hallmark symptom of ankylosing spondylitis, one of the extraintestinal manifestations of IBD, and is not affected by colectomy. Could be that it is just in remission or that your SI joints have fused (pain stops once the joints fuse).

I am going to presume that diseases such as lupus have been ruled out through lab tests (you would have an elevated ANA if this were lupus).

I would wait for your current lab results, then go for the CT scan. If that is negative, I'd ask about small bowel investigations (small bowel series and camera pill endoscopy) to look for Crohn's lesions. If this is Crohn's, maybe all you need is maintenance medication to keep you in remission. Some people go many decades before being diagnosed, so it is no simple task. You would think that all your biopsies would be enough, but you need to find the lesions and test them, and they can be anywhere from the mouth to the anus, not just in your pouch. Even if lesions are found, biopsies may not be 100% clear if there are no findings that make it clear that this is Crohn's and not something else (such as granulomas or lesions that involve full thickness of the bowel wall). Even if you have an abscess, this could be Crohn's, depending on where it is located. It is complicated because abscesses can occur as a complication of this surgery too, unrelated to Crohn's.

Jan

Hi Nancy,
Sounds so very familiar...back in 1998-2000 my now hubby used to call me 'sleepy'...I was constantly tired out...Exhausted really...not thin, just could not get the strength up...worked madly and then slept ALL weekend...Ate, kept busy but had no energy, desire, low grade fevers, coughs, fluey sysmptoms... from time to time that I left untreated..too tired to take the time to go to a dr...took 2-3 yrs for the first 'cyst' to show up. then they started popping out all over the place every few months...then weeks.
In the end it was a combination of 2 things really..I had a staph infection simmering in my lymphnodes...wherever there was a lymphnode, a cyst appeared later..they looked like little pimples one day and the next they went balistic if I touched them...(I know..don't touch them!) my surgeon kept removing them but never bothered to look for the origin of the problem until an old family Dr. friend of hubby's told me to forget the symptoms and search for the cause...
The cause? Necrosis. The area between my K pouch and the ab wall was going necrotic...infecting my system and the nodes were trying hard to carry away the infection....I took every anti-biotic on the market for over 9 months strait..couldn't stop or the fever, lumps/pimples and fatigue came back...until my stoma slipped and a surgeon went in...and discovered the necrosis...cleaned it up and the infection disappeared...overnight.
They called them sur-infected sebacious cysts at the time but later on I kept getting these pimples around the groin and under the ass...hurt like crazy whenever I sat down...stopped waxing the fuzz off too...One day I asked a plastic surgeon to take a look and he ended up removing a whole chain of nodes...biopsied them and discovered non-hodgkins lymphoma...took the other chain out later...no more fatigue....fine now...
If you have swollen glands on and off get it checked out...it is silent and insidious but real. Had absolutely nothing to do with the pouch really...we tend to focalize too often on the pouch and forget the rest of our body...
Don't know if this will help but....

Sharon

Jeez, Sharon - what an ordeal! I am so glad they finally figured things out with you. That's quite an accomplishment. I guess I've gotten in kind of a bad habit of taking a "wait and see if it resolves itself" outlook, since I absolutely hate going to doctors. Anyhow I am able to report at this time that after 2 doses of Levaquin, I'm feeling a little better. Appetite is slowly coming back. Still had night sweats last night, but they seem to be letting up some. Daytime fevers seem to be mostly gone (evening, around 99, which is kind of high for me, who is regularly around 97.6 or so). Still very tired, and now fighting the infamous butt burn. Still have that achy feeling 'down there'. Jan, I had a upper GI w/small bowel follow-through back in '04 when all hell first broke loose. That turned up negative for anything. Is that the same thing as a small bowel series? I have been tested for ANA (normal) and all the other autoimmune things they can test for. I was diagnosed quite some time by one rheumatologist as having ankylosing spondylitis. The next rheumy who cared for me told me I did NOT have AS, and that the previous dr. should not have told me I did. OK, there's one reason I hate going to drs. - I always get the feeling they don't know as much as they should/could/etc. I should be getting my lab results in the next day or 2, and will follow through w/my internist about a CT scan. Thanks again for your insights and support! You really are invaluable. I'll keep you posted!

You didn't say how old you are Nancy...night sweats?? Tired out, exhausted etc....how are those monthly visits doing???any irrgularity on the periods?
Sometimes stuff is just stuff..we forget the normal stuff...fever spikes may be something else too...
keep investigating...
Keep us posted
Sharon

I've been going through The Change for a couple of years now (I'm 53). The hot flashes are intermittent - they're there for a few months, and then are gone, then reappear... My GYN said that's normal ... as they cycle, they're getting to be much less severe. I'm pretty sure (but now that you mention it, not 100% certain) that the night sweats I'm now experiencing are not my hormonal hot flashes. Ya kinda get to know them well as they're occuring! I think these night sweats are related to the fevers - they've been occuring w/these "flu-things" I've gotten since '04 (my hot flashes started in '08). I'm not too fond of taking my temp. at 3:00 am when one might be occuring, but I did the other night, and had a low-grade temp of just over 99. But, you are most definitely right, sometimes stuff is stuff. I have at times wondered if this pouch isn't just a medical red herring of sorts. Thanks for your thoughts!

As a quick update: my internist called me last night to discuss lab results. My CRP was 79 (the upper limit is 5), sed rate 36, and strep was found in the urine culture. He's treating me w/penicillin for the possible bladder/UTI infection, although I have no symptoms in that area. This is in addition to the levaquin for the possible pouchitis. He's also arranging for a CTscan. He believes there's an "indolent" infection somewhere. My jpouch is behaving a bit better since the levaquin, but still tired/headachey/not-feeling-right, etc. Will update again after the CTscan.

The CTscan showed only my sacroiliitis, as well as a thickening (8mm) of the pouch wall. My surgeon believes that's due to the inflammation (edema). I've finished all the antibiotics, and started on VSL#3DS this morning (side-note -my insurance comp. covers it - 2 sachets a day for $50/month). I was also given a prescription for lialda, but I'm first giving the VSL#3DS a chance. The scope was delayed for about a month. I'm going in this week to get a follow-up CRP and Sed rate done. Does anybody else get their CRP tested during pouchitis or Crohn's flare-ups? How high are the results?