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HELP...Medical Mystery...I need Gregory House

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Crohn's Disease
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yogaprof
Veteran Member
Joined : Apr 2006
Posts : 1665
Posted 4/11/2009 5:40 PM (GMT -7)
I thought adhesions, too, when I read your post. 3 years ago I had horrible pain and was diagnosed with crohns, but later it never showed up again. however, pain never stopped. I had 3 pelvic surgeries 30-20 years ago. I had adhesions cut and it helped a lot. I also tested negative for celiac, but gave up gluten a year ago and am SO much better. so those two things pretty much cured me.
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medicalmystery
Regular Member
Joined : Apr 2009
Posts : 45
Posted 4/11/2009 6:15 PM (GMT -7)
that's great! thanks so much...this is my first experience with message boards...how do i make my email active???
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janicea
Regular Member
Joined : Feb 2009
Posts : 350
Posted 4/11/2009 6:48 PM (GMT -7)
yogaprof: interesting. I was 2 years on a liquid diet, because the adhesions were pulling so much I was all strictured up. then a year gluten free - a couple of months ago, my gi was like: just go ahead with the bread and stuff, i don't see why not (after an endoscopy and colonoscopy). I did. then she put me on asacol. I was allergic to it, but i took it too long, so now between going off it, and the gluten I think I'm worse the I've been in a year. thanks for the inspiration I'm going to de-gluten myself. interestingly, I just sort of noticed I've stopped eating it anyway LOL. I'm not eating much anyways. but you have inspired me. thanks.

(medicalmystery -- look in your profile when i clicked your name it said unavailable, mebbe you can switch it on? good luck i'll check tomorrow and see and send you an email) :)
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yogaprof
Veteran Member
Joined : Apr 2006
Posts : 1665
Posted 4/12/2009 7:08 AM (GMT -7)
I figure, no one needs gluten, so I don't care what my doc says, I don't eat it. it cuts a lot of junk out of my diet and makes me think about what I am eating, never a bad thing! and I can eat all the things I couldn't when I was eating gluten like salad and fiberous foods.
back to adhesions--I found some docs don't believe they cause pain or inflammation, but my GI believed all along that I do not have crohns, but it was just the adhesions causing the problems. it is an easy surgery (as surgeries go!) and made a world of difference.
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medicalmystery
Regular Member
Joined : Apr 2009
Posts : 45
Posted 4/13/2009 2:48 PM (GMT -7)
Thanks all...I have had several vomiting episodes, I attribute them to the pain...They seem to be mostly just bile and mucus...aka early morning or late at night....sorry...I know you've all experience worse...Anyhoo....and no i'm not preggers...Because of all the wretching...I haven't been hungry and have been nauseous...any higher calorie easy on the tummy suggestions out there??? I don't think I could do Ensure or something of the sort...The thick milky texture makes me nauseous thinking about it...

so far i have been living on gingerale...but i need some calories...i have never had appetite problems really until all this started, so I am at a loss

also...i noticed today....little red dots on my thighs...not raised...kind of diffuse...petichae maybe? anyone had any experience?
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JasminAline
New Member
Joined : Apr 2009
Posts : 1
Posted 4/26/2009 5:57 PM (GMT -7)
Hi there,

Thanks for sharing. I'm a writer for msnbc.com, and I'm actually working on a story about how some people wish their doctors were like House, and whether real doctors can learn anything from House.

I would love to talk to you for my story. Please get in touch - you can reach me at jasminaline@gmail.com.

All the best,
Jasmin Aline Persch

medicalmystery said...
I apologize in advance for the length of this....

I have been through the ringer a bit with tests lately and no one can figure it out. I will give you a brief history...if possible, I'm a detailed story teller...

I'm looking for answers...I know you might not be a doctor, but they can't seem to figure it out either.

Review of History and Symptoms:

-chronic painful diarrhea since 1995
-nocturnal diarrhea
-anal fissures
-unexplained bouts of weight loss
-history of anemia
-Chronic Fatigue
-mild to moderate lactose intolerance
-symptomatic low B12 level
-some random joint pain
-occasional vomitting
-as of late constipation a few times

TIMELINE...sort of:

-Diagnosed with IBS in ninth grade...exacerbated by stress....presented with lots of painful diarrhea...and somewhat frequent nocturnal diarrhea....doc's suggestion was to relieve stress....that was it....that was 13 years ago.
-For years after that I suffered diarrhea that made me late for things...I passed out from the pain a couple times...threw up from the pain a couple times...still had random bouts of nocturnal diarrhea...and rectal bleeding
-I had several periods...about every 2 or 3 years where I would lose 10-15 pounds without trying...no diet change...pretty unexplained
-I tried keeping bowel journals...I never could pinpoint any specific foods...except for most of the time Dairy made it worse, but not always...sometimes I could barely finish a meal before I was in the bathroom...Thank the Lord I'm not a germaphobe...I've experienced my fair share of public potties...It got worse with stress sometimes....but not always....
-Sometimes it seems to be better for extended periods...regardless of stress level or diet.

Recent History...
-I presented to the ER 2 days before Christmas with acute right lower quadrant pain and very slight fever
-I hadn't had much of an appetite and had thrown up a couple times and felt a little dehydrated
-It looked like a textbook case of appendicitis....they almost cut me right then...but my lab, not sure what all they drew, were normal and my CT with contrast was normal except for right and left ovarian cysts and a left sided enlarged lymph node...They gave me IV pain meds...which did NOTHING...a script and sent me home.
-I previously went to the ER in 12th grade with suspected appendicitis, but that did turn out to be ovarian cysts and one ruptured....this felt higher and much different. I have had cysts on and off for years..
-Christmas day it was worse...I went back in...They were positive at this point it was appendicitis....but last minute decided to scan me again...This time their primary diagnosis was constipation...never remember that as being a problem...but I was dehydrated and had been on narcotics for days...so who knows
-I did their prescribed colon clean out....no relief...just lots of hours on the pot with even more pain now
-Went to the GYN...ultrasound revealed cysts...considered endometriosis...scheduled surgery.
-Had the surgery...they found LEFT sided endometriosis...removed a cyst and drained 3 more...(they were embedded in fallopian tubes and would have required removing fallopian tube and ovary)
-This whole time none of the narcotics are working....I'm talking Lortab, Demerol, Dilaudid, Percocet, Vicadin...I can't sleep because of the pain...Two percocets and an ambien and I was wide awake all night.
-4 days after surgery I have no relief still
-Pain meds still not working...the only time I got any relief was when I took 4 advil adn a pain med...inflammatory, right?
-Went to GI...scheduled colonoscopy...we didn't really discuss history...more acute stuff...constipation...pain...nausea...vomitting...anorexia...
-Colonoscopy showed a polyp and some diverticula...I'm 28 and pretty young for that so weird, but...my terminal ilieum looked okay...At this point I discussed more bowel history with him...the polyp was precancerous...but other than that the colonoscopy was a bust
-Scheduled smalll bowel series....showed nothing
-he tried me on Librix, an antispasmodic for the IBS...no help, nothing
-I am chronically fatigued and having a hard time concentrating...etc...I have been non-stop googling symptoms....and I decided to ask for a B12 level
-I got a B12 and a celiac screen
-B12 very low...celiac negative
-At this point I am back to my regular diarrhea...with periodic anal fissures
-I did a camera study...pill cam...pending results
-next step figuring out why I am B12 deficient...Intrinsic fator?...Whipple's....small bowel bacterial overgrowth?
-My mom said she has been trying to get them to test me for Crohn's for 10 years.


Anybody have any ideas??? I just want to figure it out and treat it.

Everyone is still saying IBS...sounds like Crohn's to me minus the negative test results so far..

If anyone read this whole thing God bless you and thank you!!!

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