Here is my story--may have Crohn's-looking for help and advice

In a nutshell:

Premenstrual fevers (>102) and URQ abdominal pain; feel OK other times

Massive liver enlargement, mild to moderate LFTs (GGT 3x normal, ALP ~2x normal)

No D, some mild constipation

Colonoscopy shows narrowed/ulcerated junction between small and large bowel

Here's the full story. If you see something that looks familiar...if you think you know what my problem is...Please share.

March - May, I had mild URQ pain intermittently, it always came on at the same time--about 5-7 PM--and then disappeared within a few hours. I also got a hemorrhoid that would occasionally bleed.

End of May I had annual GYN exam and admitted the pain. When they palpated the LRQ it hurt, so they ordered an ultrasound next day. That evening I got the URQ pain, plus it radiated down to my pelvis...very bad. At night I spiked a fever >102 F, night sweat, the pain finally went away at maybe 5 AM. Ultrasound showed evidence of ruptured ovarian cyst, but that didn't explain the fever, and it should not happen since I was on BCPs. Bloodwork suggested inflammation so I was sent to ER. CT scan... no appendicitis...inflammation around R ovary and "mildly" enlarged liver. They suspected PID, gave me a heavy dose of antibiotics (doxy and flagyl plus IV in the ER). Also put me on a higher dose BCP. Fever went away after a few days, and had I no abdominal pain.

Then almost exactly one month later, I feel the mid/upper abdominal pain, plus nausea, during the day. I call the student health center and make an appointment for the next morning. By that time the pain was gone, but my temp was ~100. Bloodwork suggested inflammation plus my ALP was elevated. Now the doctor suspected Crohn's so they ordered a small-bowel barium series a few days later. I was skeptical because I never had D... and the result was my small bowel was normal, but my liver was HUGE, basically takes up my entire abdomen. They repeated my blood tests and ESR and liver function were worse. The health center doc said to me that the liver enlargement was serious, and that "when the liver is enlarged it could rupture, which would be worse than a heart attack." So back to the ER.

Based on another CT scan the ER doctor suspected I had Budd-Chiari (huge blood clot in portal vein... potentially fatal). The doc said it was very rare, one of those things you only read about it school. He didn't know much about it, so he printed off something from eMedicine (NOT kidding) and handed it to me.

I spent the next four days inpatent while the doctors were trying to figure out what was wrong with my liver. It was 4th of July but they came in anyways because I was "interesting." Couldn't find a clot, so every day it was some new rare disease that would likely be fatal, or minimum require a liver transplant. I had a ton of blood tests, Ultrasound, MRI, liver biopsy, and a venogram. Couldn't find anything except large liver and dilated sinusoids. They diagnosed me as "massive hepatomegaly of unknown etiology" and sent me home, because I felt OK, except for some pressure near my ribcage. No treatment, but they did tell me to stop taking the BCPs, don't take Tylenol, and no contact sports (don't want to rupture the liver).

I had two consultations, one with a hepatologist at University of Chicago, and they blamed it on the BCPs since I was getting better. Four months went by. I felt better, and my liver function tests and ESR were going down. No D, actually became mildly constipated and started taking fiber supplements regularly.

For one day in November I had a fever ~100 and lower back pain. I didn't think much about it.

Then in early December the fever is back, >102, I had chills for hours at a time, night sweats, the fever last for four or five days but I only had the URQ pain for about four hours one night. I realized that these bad episodes always happens premenstrually... Including May/June. Talked to GYN and he said PMS does not cause such problems. He ordered a blood test, which showed ESR was up again (about two weeks before was 27, now 50) but my LFTs were still near-normal. I also had a consultation with infection disease, doc told me to come back when I have a fever again. My primary ordered a HIDA scan and colonoscopy. 

HIDA scan-gallbladder is fine.

Colonoscopy was last Friday. I expected it to eliminate Crohn's from the list, since I don't fit the usual presentation. But the doctor found that the junction between my small and large bowel was narrowed, he couldn't even get the pediatric scope through. Also there were two ulcers. He took biopsies but I won't get the results for a long time. Based on the colonoscopy he ordered blood tests (don't remember those- Verced) and CT scan of the small bowel w/ barium. I did it that day so I wouldn't have to prep again. Don't have those results either. I don't have a followup with the gastroenterologist until Jan 31.

This is probably just coincidental, but I'm fairly prone to UTIs, and both the May and December episodes were preceded by a UTI about one or two months before, for which I took Cipro.

Nowadays I feel fine, except for intermittent pressure/bloating in my abdomen, near the end of my ribcage on the right. Which I am guessing is from the stricture.

Post Edited (Confused in IL) : 12/26/2007 8:59:24 AM (GMT-7)

other "theories" regarding what's wrong with me are some kind of intestinal infection, like TB or histoplasmosis, or intestinal endometriosis.

You pretty much summed up how I feel YP... I want a diagnosis so I can get treatment...or at least so I know what to expect in the future. But thanks to the colonoscopy I can now worry about liver failure AND intestinal obstruction >:-(