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

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medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/9/2009 7:06 PM (GMT -7)   
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!!!

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/9/2009 7:23 PM (GMT -7)   
Forgive me if this sounds pessimistic or jaded, but just because your doc biopsied you for crohn's and it came back negative does NOT mean that you difinitively don't have crohn's. Lots of us have been biopsied time and again with no sign in the biopsy of crohn's. My diagnosis was missed for years because my symptoms manifested in fistulas around my anus, but there was absolutely NO sign of crohn's in my colon. Weird, right? More like annoying.

As you run out of diagnostic tests and run short on sanity (trust me, I know where you're at!) my best advice is to find another GI... or two. You need to find someone who is an "expert" of sorts at crohn's. 99% of your intestines could show no manifestation of crohn's what-so-ever, so you need to find a doc that is skilled and experienced enough to biopsy the most likely point of inflammation. Preferably SEVERAL likely spots.

I would have to agree with your instincts here... your symptoms are VERY crohn's-like. I hate to tell you to chug more nasty prep-juice and get scoped again, but I really think I would go for a second opinion if I were you.

Best of luck, whatever direction you go!

PS.
I also tested negative for celiac's, but I get TREMENDOUS relief from avoiding gluten. If you can stick with the diet for a month, a mere 30 days, you will either say "HOLY cow, I feel better," or "MAN this is stupid and I don't feel any better," at which point you can continue or abandon said diet. If you're really at your wits end, it is something you could try while you wait on other answers...
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (loading doses 2-12-09)
Probiotics, Digestive Enzymes, and Prednisone


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/9/2009 7:26 PM (GMT -7)   
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.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/9/2009 7:45 PM (GMT -7)   
Thank you for your replies...seriously...to be quite honest...at this point I am pretty convinced it is crohn's...but none of my docs are....I'm okay with the diagnosis...I would just like to hear it and treat it.

I was just actually considering a second opinion...I just found out about a Crohn's specialist in town...I am sure there is a waiting list, but he might be worth it.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/9/2009 7:50 PM (GMT -7)   
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 :)
My bum is broken....there's a big crack down the middle of it! LOL :)


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 4/9/2009 8:20 PM (GMT -7)   
House would just call you a lier and walk out :) I love that show
SCD since 01, remission since 01, occasional Arby's breaks :)


cutie
Regular Member


Date Joined Jan 2009
Total Posts : 80
   Posted 4/10/2009 4:21 AM (GMT -7)   
or maybe he would find a cure---he's The Man!!!!!
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2009 4:59 AM (GMT -7)   
I'm all for having one of those miraculous House-style colonoscopies that they seem to be able to do at five minutes' notice, without the patient having to do bowel prep.
Co-Moderator Crohn's Forum.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/10/2009 7:34 AM (GMT -7)   
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!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/10/2009 7:43 AM (GMT -7)   
I agree with Nanners pill camera might be the way to go here?
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/10/2009 8:05 AM (GMT -7)   
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.....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/10/2009 9:05 AM (GMT -7)   
thanks all! i was somewhat ignorant about the difficulty diagnosing this disease until i found this message board. i figured it was pretty cut and dry and any doc could discover it.

i work in the medical profession, which is good in a way because people are more understanding/accepting of my frequent bathroom trips. but, on the otherhand....most of the docs are just as bad...the ones that know say...if your colonoscopy and small bowel series were clean, you don't have crohn's...and you are too "healthy", whatever that means, to have crohn's....so it just adds to me thinking i am making things up in my head or am crazy

arghhhhh...i can't explain the gut feeling i have (no pun intended) that its crohn's...not that i want or am asking for it....would just like an answer

nanners...thanks....i actually just swallowed a pill cam wednesday...waiting for it to make its exodus!

can the pill cam miss it too?

please forgive my ignorance, but the pain that i am experiencing in my right lower abdomen is new...but my other symptoms are not...i guess there is a possibility that the side pain isn't related since my ileum was "clean" on colonoscopy...
my diarrhea is actually better than it has been in a while....could it be possible i am in a period of remission, and the pain is a fluke?
is it harder to diagnose if you might be in remission?

i know none of us are doctors....i'm just looking for opinions!

and an appt with the crotchity old house...if anyone has a hook up...or cuddy's direct line :P

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/10/2009 10:47 AM (GMT -7)   
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.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/10/2009 11:28 AM (GMT -7)   
If i were you I'd try bioentopic b12 creme - get a OBGYN with experience in endometriosis and adhesions and a GI doc that gets infections who's willing to speak to the OBGYN. Also, do you have any history of travelling outside the US?

HUGS!

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4099
   Posted 4/10/2009 2:31 PM (GMT -7)   
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.
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/10/2009 2:52 PM (GMT -7)   
I'll second the lower right pain -- last week I had a super resurgence of old pain, and i thought darn my ovary hurts! Then I remembered it got taken out. LOL. those pains are really ahd to seperate. Looking back, I realize now a lot of what I attributed to endometriosis/ovarian pain was adhesion and crohn's pain.
I learned last week that even mild crohn's makes pelvic adhesions around the bowel and intestines more likely. A problem inside attracts a problem outside, or something like that.... I had adhesions surgery and my last ovary and uterus out in July. No more blaming those girlie parts!!

medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/10/2009 6:55 PM (GMT -7)   
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!!

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/11/2009 7:10 AM (GMT -7)   
Here's a hug to you. what part of the country are you in? There are some pretty decent docs around!!

The higher pain your experiencing, maybe could be a colon adhesion or large intestine? all my right sided female stuff left me with a lot of random problems on the right side myself. But I am muchymuchy older than you now. Medicine is a lot better these days, so for YOU the trick is to find the right guys to help you along.... the blame game won't make you feel better. xoxo

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/11/2009 7:12 AM (GMT -7)   
And get that b-12 creme. Might not get rid of your pain, but getting rid of fatigue rocks!

medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/11/2009 8:35 AM (GMT -7)   
thanks janice! I am in central florida. I just found a Crohn's specialist named Dr. Shafram...I haven't made an appointment yet. Anyone heard of him?

thanks for the hug...I am getting B12 shots now...do you recommend the creme as well?

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/11/2009 4:08 PM (GMT -7)   
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

medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/11/2009 4:28 PM (GMT -7)   
that would be awesome!!! do you know any good GI's around here? that is exciting! thank you thank you thank you

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/11/2009 5:17 PM (GMT -7)   
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.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 4/11/2009 5:19 PM (GMT -7)   
BTW I had one surgery there with both docs. Kim did the gyno stuff and redan cleared the adhesions of the bowel. It was all laproscopic, I was outa there in 24 hours, feeling good.

yogaprof
Veteran Member


Date Joined Apr 2006
Total 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.
49 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. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

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