I've searched through some of the postings and can't quite find anything related to what I am experiencing. I'm wondering if anyone has had this experience, it's hard to explain but here it goes:

I pretty much feel like I just rode 100 miles on a bicycle, in a nutshell. (Thats the only way I can think of to describe it.) Meaning, I have pain in the perineal area, sort of on either side though (not rectal). It's deeper than just skin surface, but it doesn't feel like it is deep enough to be related to the pouch. My doctor thinks it is pouchitis and I have just finished a week long round of cipro/metronizadole with what seemed to be success, but a week later it feels like it's coming back. This is the third time in 3 months. Antibiotics seem to help, so it makes me think that it is an infection of sorts, but I don't have all the other symptoms of pouchitis that everyone describes. When the "infection" was at its worst, I had a lot of pain, it was somewhat swollen and warm to the touch as if there was a decent sized pocket of infection, somewhat localized to just one side and deeper than just within the skin layers, and I ran a constant low-grade fever with chills, and was super tired.

The first time I went to urgent care (I had no idea what was wrong with me, it was a Sunday, and didn't know what else to do) - they had no idea either, and told me to go to the emergency room as my pain was almost intolerable and I had a fever of about 103. Went to emergency room, had blood tests, abdominal ultrasound (still not sure why, pain was nowhere close), pelvic exam, etc. Doctors weren't sure, but elevated white blood cell count indicated infection so she let me go with a prescription for cipro, I think. After about 3 days on the antibiotics, I began to feel better, and by the 5th or 6th day the pain was almost completely gone.

So after a few weeks, it came back a second time (of course, over the weekend), went to urgent care and the doctor prescribed a different antibiotic - cefdinir (generic for omnicef). I decided to see my GP that week when this antibiotic didn't seem to be working as fast. She changed my antibiotic to cipro/metronidazol and said I should see my j-pouch surgeon to be on the safe side, as she was concerned about the proximity of the infection to the pouch.
So I was able to get in to see my surgen a couple of days later, after the antibiotics started taking effect and the infection was almost gone. She did a scope and looked around, and everything looked fine aside from just a little bit of irritation near the rectum. She wasn't too concerned and said it was probably pouchitis (I've never had any complications since my last surgery in March of 2005). So I just finished the third round of cipro/metronidazol about a week ago, and it seems to be coming back AGAIN.

I'm at a loss, no one seems to know what I'm talking about except for my surgeon, and even she doesn't seem to understand.... When I read what people say about pouchitis symptoms, it makes me wonder if I'm being misdiagnosed. I don't have the urgency, increased frequency, bleeding, none of that... everything is fine except for the seemingly localized pain, and if it gets worse, an accompanying low-grade fever and fatigue.

So.... thoughts anyone? Is there something that maybe I'm not explaining right, or something that I might be missing? Maybe I just need to be on the antibiotics for a longer period of time? Is this something that needs to be drained? I feel like a mutant!

Thanks in advance for any suggestions or advice... my husband and I are trying to plan a Carribbean vacation but I really want to get to the "bottom" of this first. It seems like something that could be very easy to treat, or on the other end of the scale - something really serious. It's a little concerning, as I have been so healthy and have had absolutely NO complications since my final surgery.

Is the pain burning, stinging, dull and throbbing, hot, stabbing, constant, or does it occur at certain times?

Sounds like a peri-anal abscess to me, and I'm not sure why your surgeon wouldn't be able to detect that just based upon your description. Best thing you can do is take multiple warm/hot baths everyday with or without some Epsom salts and keep taking the antibiotics. Some surgeons will drain abscesses. My surgeon would not for fear it would never close again because it was not open to the skin. While you're in the tub, feel around in your vaginal and anal area and see if you can detect any bulges. Best of luck

Hi Debra,
It is a constant localized pain, not sharp but always there... only sharp or worse when I sit, especially on the left side. I agree with you, Shelby, I think you are absolutely right about it being an abscess, and also confused as to why my surgeon was not too concerned about it. Although, in her defense, by the time I was able to see her the abscess was almost gone... and it was the first time I had seen this surgeon, as my original surgeon has moved to the East Coast.

Thank you for the advice, Shelby, I will try that today. I have already gotten the antibiotic scripts refilled, this time for 14 days. I am hoping that this is all I need... I feel very discouraged right now, and am not ready to accept that this could be another long battle to fight... I guess I am lucky that I have had no other complications in the last 3 years, and I was stupid to think that the rest of my life would be without incident when it comes to my health... but I suppose it was a good run while it lasted. I will be making another appointment first thing in the morning, and will be firm that she pay more attention to the abscess this time.
I have so much respect for all those who have endured setback after setback, and hope I can find the same strength, should I ever need it. I'm thankful for this community, as no one else in my life even remotely understands in the smallest way what I have been through, and possibly what is to come in my future (knock on wood). It's also so comforting to know that I need not feel embarassed having to describe my symptoms to you all - what a relief to just be able to talk about it and know that I will get real honest feedback, from people who just "know".

Anyway - Thanks very much for the advice, and I will let you know how things go!

It is possible that the antibiotics had battled the infection just enough so that it was not obvious at the time of your exam. That's the bad part; if you stop the antibiotics for it to get large enough, you're in pain. Still, your description sounds very much like an abscess.
I have had an abscess for over 2 years, and I believe it might have finally given up But, like I said, I might not know until I'm in pain if it is gone for sure. Try not to worry too much, it only makes things worse.

I agree, it sounds like a perianal abscess. I felt exactly like you for weeks and weeks and put it down to going to the toilet and straining so much. I described my pain as if I had been on a really long bike ride, given birth and being kicked by a horse. Eventually, it got so I just couldn't sit down at all and that's when they admitted me to hospital. By that time, I was in so much pain, nobody could examine me. And anyway, there didn't seem much to feel unless I stood up, then I could feel a swelling.

It just got worse and worse until during visiting time, after numerous pain killers, I suddenly felt wet and warm down below, and the pain just disappeared. The abscess had burst and I just felt relief, but still no one was sure where it had come from. I am still on antibiotics now, because whenever I stop, I start to feel sickly and ill, and there is still a tender spot there, and sometimes some swelling, but it tends to come and go. Had enough problems, so am just throwing in the towel and going back to a bag! Hope this helps!

Thank you so much for the responses. I finished a 2 week round of antibiotics last week, and it seemed to do the trick... but now I am feeling it is coming back again.

It is getting very frustrating... and I am hoping I do not have to be on these antibiotics while I am on vacation! The constant nausea and metallic taste in my mouth is almost unbearable, and all the other side effects add up to make life pretty much miserable while I am taking them.

Back to doctor tomorrow...

Thanks again for all the reponses!

Antibiotics will not cure an abscess. They can only serve to try to keep it from growing and hopefully, just keep it in check until it eventually "burns itself out." The risk with that approach is that it could lead to a fistula if it is not kept small. If you continue to have the pain and fevers, I'd ask for an pelvic CT scan or a repeat ultrasound. The location you describe sounds more in the perineal tissues (such as a bartholin's gland cyst or perirectal abscess) as opposed to a pelvic abscess (which would be less localized pain).

Jan