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

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Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 12/26/2007 8:40 AM (GMT -7)   
I just wanted to share. I've been suffering some strange symptoms, doctor's can't figure it out, and right now the going theory is that Crohn's is my problem. I'm not sure about that. I'm not even sure this is all caused by one disease process. Could it be Crohn's? I am also wondering... Since I have a stricture, is there anything I should/should not do? Is there anything I can do to help the healing process? 
 
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)


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 12/26/2007 9:37 AM (GMT -7)   
Wow...sorry to hear that you have been thru so many tests and such pain. Well, I'm not a Dr. so I won't try to play one here. Your symptoms could lead to so many different illnesses. I would be very concerned about your enlarged liver, that is very serious business. What are the docs gonna do about that?
Marci, 38 years old, Rockledge, FL
Dx with Crohn's disease March 2006, currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor, plus 3x per day heavy iron supplements for anemia


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 12/26/2007 9:48 AM (GMT -7)   
hi confused and welcome. I would say you are doing all the right things and answers will start coming soon I hope. the first few months (or years in my case) can be tough as tests and meds come and go. my wish for you is they find something soon so you can get on with whatever you need to do.

in my case, I had positive dx for crohns after fever, pain, and constipation. inflammation was found and biopsies showed crohns, but then all that went away, I still have pain, and no real answers. however, what i wanted to tell you is you sound smart and like a good researcher, so that will help the process for you. keep coming here and reading and writing--that will help you I am sure. let us know what the SBFT shows. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil and vicidin as needed.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 12/26/2007 11:36 AM (GMT -7)   
I was very concerned about the liver, that's still my biggest fear. It was so large that in the first abdominal MRI they missed the top, so I had to have a second MRI after my liver biopsy.

Throughout the entire process the only thing I have been "treated" for is pelvic inflammatory disease, which I may or may not have actually had, and that was in late May.

You can probably imagine how weird it was to be in the hospital, told I might have all these terrible diseases (Budd-Chiari, Wilson's Disease, Glycogen storage disorder, NASH) and that I "needed to get connected with a liver transplant center" only to be sent home four days later with no diagnosis and NO treatment. They tested me for everything obvious and rare, but found no explanation. All the docs said was (1) stay off birth control pills (2) no Tylenol (3) no contact sports... and my insurance has been billed >$40,000. I saw a hepatologist at U Chicago and he "had nothing to add." The health center gives me a lot of lattitude, I have been getting blood tests every month or two, which have showed my LFTs decreasing steadily. Although my ESR was up in December my LFTs were still down. I hope it stays that way. I was supposed to have a follow up CT scan for the liver in six months, but I just had the CT scan last week, hopefully it will show my liver is the same or smaller.

I was feeling a lot better and I thought it was over, but then the stuff happened in December. Now I'm nervous of course, it's cyclical and I don't know if it's going to come back next month. But I guess in a way I hope it does, because that will keep the docs interested, and the momentum going towards a diagnosis.

Personally I am skeptical about Crohn's, even when I had pain I never medicated myself for it, it wasn't that bad and it never lasted more than 12 hours, usually less (and I am confident my pain tolerance is at or below average). Honestly I look at the posts around here and in terms of pain/GI stuff what I have gone through pales in comparison. For me, the fever has always been more of an issue than the pain or GI trouble, and it's always been self-limiting. Plus I have found nothing about Crohn's only having symptoms before menstruation--that's part of why I'm here, to see if anyone experienced that. But I need to wait for the biopsy and SBFT results (my first in July was normal). My 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 >:-(

Post Edited (Confused in IL) : 12/26/2007 11:49:09 AM (GMT-7)


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 12/26/2007 1:31 PM (GMT -7)   
Hi, Welcome to HEalingWell!
Yeah, that sounds like possible CD.
As far as MRI's go though, I've found they have a habit of picking up all sorts of anomalies that aren't as serious as they sound..

Sincerely,
Matthew

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 12/26/2007 2:18 PM (GMT -7)   

Just to address one of your questions, I think a lot of (and perhaps the majority of) women with Crohn's and other autoimmune diseases have worse symptoms right before their period. I tend to get a low-grade fever then, and almost never at other times. (However, I may not be the best example, because I'm not actually diagnosed with Crohn's. I have an autoimmune disease that is more like Crohn's than anything else, but doesn't perfectly fit any of the normal diagnostic categories.) Anyway, hope that helps a little.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 12/26/2007 4:08 PM (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 >:-(
I am glad you are ruling things out. the real bummer that I hate for you to even think about, it that many of us have been diagnosed and then undiagnosed, so sometimes an answer isn't even an answer!  take care, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil and vicidin as needed.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 12/26/2007 6:36 PM (GMT -7)   
Thanks for your replies. If Crohn's does worsen before menstruating, then I guess there's a good chance that's the explanation. I know that the liver injury I have, centrilobular sinusoidal dilatation, can be caused by Crohn's. There are other explanations that hopefully the infectious disease doc will help me to rule out. Not keen on having IBD but (thinking positive!) it's better than the other things they tried to diagnose with me with in July.

Now it's wait-and-see mode...results can't arrive soon enough.
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