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

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!!!

Your symptoms sound very crohn's-like to me, I'd go for a second opinion as well, it's not always easy to DX so having a good doc helps.

:)

In the mean time may I suggest you take a good probiotic (if not already taking one) and probably a fibre supplement daily as well since it can aid with D or C, just be sure to drink plenty of water with your fibre supplement if you choose to take one...probiotics are beneficial for anyone with gut issues (IBS or IBD), same with fibre supplements.

Hope you find the answer soon :)

or maybe he would find a cure---he's The Man!!!!!

Maybe you can try asking for a pill cam. These generally help folks get diagnosed when they have had no luck with the other tests i.e. c-scope, SBFT, CT etc. Good luck!

I need House too. If he failed to help me, at least I could steal his vicodin....

On a more serious note, I'm with everyone else, I think you need a second opinion. Good luck.....

medical mystery sometimes we just have to wait until it mainfests itself to the point they can see it...in the mean time it feels like you are going nuts... but hopefully the pill camera will give you more info...just remember on EGD and colonscopy they miss 18 feet of intestine.

There is special bloodwork called Serology 7 that is sent to a lab in California that may help to confirm a Crohn's diagnosis. The problem with the colonoscopy is that you may not have active inflammation at the time of the test, and so everything looks fine. A year before I was diagnosed, I was hospitalized for severe anemia, and all of the tests which included colonoscopy, endoscopy and SBT came back completely negative. They gave me an iron infusion and sent me home. A year later, the anemia returned and the doc found an ulcer in my small intestinc with the pill cam, and a repeat colonoscopy revealed a stricture and biopsied Crohn's in my ileum. When I get right sided pain in my lower abdomen, I can never figure out if it is my ovary or my ileum. Don't give up, and definitely see a Crohn's specialist. The low B-12 levels and anemia make me very suspicious. BTW, I'm not a doc...just a Crohnnie! Good luck.

thanks janice and gumby...

it is comforting to hear so many on hear that have multiple conditions...it seems difficult to get my docs to acknowledge that there might be multiple things going on and quit blaming each other!

i was super suprised at how many have IBS and Crohn's...so not fair!

I have usually been really in touch with my ovarian cyst pain and stuff...and this time its so different and higher than normal, etc. not to say that it couldn't have changed....but even with the draining and removal of them no relief...the suggestion of my OB was to try removing my right fallopian tube and ovary...I am not ready for that as I am still single and childless....

I am so sorry to hear everything that all of you have gone through and continue to go through...but in a bizarre way it is comforting to know I'm not alone...no one in my life can really relate.

thanks!!

And get that b-12 creme. Might not get rid of your pain, but getting rid of fatigue rocks!

I can recocomment an adhesion/colon/pelvic surgeon (reminds me of dr house ironically) and the absolute best obgyn and doc (and surgeon) I ever met ever ever ever at celebration hospital (celebration fl) ..... I flew there from nj to get surgery. let me know if you want more info. The obgyn was so good, I was so sad that I would not need him anymore (because of the hyst). I would 200% suggest the obgyn, and 97% suggest the adhesions guy. they have a special center for womans abodimainal and pelvic pain that works with them also, including diagnostic tools that are not available anywhere else.
-j

take a look at this:

http://www.adhesionscenter.com/

the super duper amazing ob/gyn is Dr. Kim and the dr. house type surgeon is Dr. Redan. If you email the CAPPS center they'll start you on your way. I'd suggest you make an appt with Dr. Kim (guy but soooooooooooo nice) and then ask him about GI docs - or just get in the CAPP program. They have everything you need there (including GI guys) and it's all coordinated. CAPPS will assign you your own patient care coordinator. They're easy to deal with.

http://www.celebrationhealth.com/

http://www.celebrationhealth.com/physicianDirectory/details.asp?physicianId=2298&specialtyId=39&city=&lastName=kim

The hospital is like a spa, and the offices around it are also very nice. Designed by Disney, but now FL hospital owns it. You're email is not accessible or I would have sent this all directly to you.. :) I had no problem with insurance with them at all. It was a good experience pretty much. if you have more questions, ask.

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.