Hard to dx me! Help!

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Tam3
Regular Member


Date Joined Dec 2005
Total Posts : 211
   Posted 2/21/2008 11:18 PM (GMT -7)   
I have been a memeber here for a long time...but haven't posted in forever. Ok I have possitive DNA and Serology tests...whatever that is. High sed rates, fevers, 33 hospitalizations, D constantly (Mayo Clinic found drug to stop that called Nortriptyline for it's side effect of constipation in Dec.) 3 bleeds since Dec. 23rd of 2007 . One of which I had a blood transfusion. Constant anemia, fatigue, pain in left side . I take vitamin D 50, 000 units every Sunday...had to have a little bag of iv magnesium and a little iv ba of potassium instead of the pills cuz I was so defficiant last hospitalization. This all started on Feb 27th, 2004 with eschemic colitis. Well I was dx w/ crohns ...have had Imuran which caused drug induced hepititis. Asacol which caused anaphylaxis. Remicade which three months after first infusion caused what they now know ( cause ana and such test are going down) is "drug induced Lupus". Entocort didn't help. With all this said and done...I am constantly dx and undiagnosed w/ crohns cuz even though all my bloodwork is screaming YES...never out of 9 colonoscopies has it showed a possitive tissue biopsy for it. But I have had inflamation. How could I have all this and NOT have crohns? What do you guys think? Yes or no? Pred, which I have been on the better part of the last 4 yrs help me right away! I can't get under 30 mg though or D comes back and pain. I would love to hear your opions. Thank you, Tammi
     P.S. I have nausea every day all day...I take 25mg of phenegran and 8 mg of zofran every 4 to six hrs. Can't have nuts, popcorn, dairy, chocolate, red meat and many other things.  I also had a medi-port put in my chest r.subclavian for iv access since I am so sick and throw up and am dehydrated so much. I don't have any perifrial iv access anymore. Severe IBS? Hmmmmmmmm!


we live, we love, we forgive and never give up...cuz the days we are given are gifts from above and today we remember to live and to love...
35 yr old wife and mother of 3 boy's
     DX with Crohns Feb. 2004
  Re-diagnosed with Crohns Dec. 2005
 
 

Post Edited (Tam3) : 2/21/2008 11:34:15 PM (GMT-7)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/22/2008 1:27 PM (GMT -7)   
Tam, it sounds like you have really been through a lot. Have you had an SBFT, endoscopy and/or CT?

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/22/2008 1:38 PM (GMT -7)   
Tam, I have seen a lot of cases here where the Crohns did not show up conclusively by biopsy in the colon because it was most active in the small bowel, which could certainly account for your symptoms. I second the motion re SBFT and/or pill cam to see what is going on in there.

Tam3
Regular Member


Date Joined Dec 2005
Total Posts : 211
   Posted 3/6/2008 9:42 AM (GMT -7)   
 I have had many sbtf's. I had the cameral pill done as well a yr ago. Usually find some ulcers, but no positive biopsies. I have only had possitive biopsy for eschemic colitis. (which I almost didn't recover from). Had another bout just this past Dec. 23rd and had blood transfusion. So idk. They said they will just call it "Severe IBS" in which they feel it is "Worse Than Crohns". I just don't know. Thank you for your reply's blessings, Tam
we live, we love, we forgive and never give up...cuz the days we are given are gifts from above and today we remember to live and to love...
35 yr old wife and mother of 3 boy's
     DX with Crohns Feb. 2004
  Re-diagnosed with Crohns Dec. 2005
 
 


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/6/2008 10:34 AM (GMT -7)   
I also was hard to diagnose, as my colonoscopies never showed anything.  Finally, a capsule endoscopy revealed what the dr. thought was UC, but my symptoms were that of Crohn's, so it was "indeterminable colitis."  They said the colitis was in a part of my small intestines that the colonoscopy doesn't reach, which is why they never found it before.  Eventually, they just started writing Crohn's as my dx.  I was even questioned by the clinical trial people, when I tried to get involved, as to whether or not I actually had Crohn's (they weren't sure I did), as I don't have one of the biggest symptoms: D.  I always had the opposite problem.  Anyway, my new GI doc said that he has had some patients with Crohn's that never exhibited any GI problems at all, that they had arthritis problems and tests indicated Crohn's.  So, from what I have researched, know from experience and was told by my doctor, yes you can have Crohn's, even if the colonoscopies aren't showing anything. 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


Trsora1
Regular Member


Date Joined Nov 2007
Total Posts : 111
   Posted 3/6/2008 11:05 AM (GMT -7)   
this is so ridiculious what you have been threw. I would keep switching dr's until someone can find out what is wrong with you. You have too many things going on that ibs doesnt cause.  Me too they couldnt find crohns either so constant inflammation. Finally the 3rd colonscopy off all medications they found in all 9 of my biopsies.  I was put on steriods right from the start with positive promethus and antibody tests.  So i couldnt ever get off steriods because like you my body just loves them. I would flare usually around 20/15.  So i finally did get off them dealt with diaherra and they repeated colonscopy.  And found it.   When i was flaring too had so much nausea thank god for phenergan makes you loopy threw iv in hopsitals. Just keep going until you get an answer.  I didnt respond either to imuran, asacol, entocort. Never tried remicade. The only thing that was a life saver for me is predisone. I know exactly what you mean IBS yeah none of that medication worked for me the spasms medications and stuff.  They wouldnt diagnose me with crohns because they couldnt find it even though you know that it is there and this isnt normal for people to be this way.  Like even if you have crohns you can have ibs as well which makes matters even worse. I would keep switching doctors or do whatever i could to get an accurate diagnosis.  I know sometimes this stupied disease takes time in showing in most people.  I wouldnt give up this isnt normal and say ibs just because they dont know what else to say. Keep your head up and keep searching for answers.
 
6 pentasa
humira injections
2mg of sold medrol

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/6/2008 11:18 AM (GMT -7)   
Have they checked you for H. Pylori? Stomach ulcers can cause major problems including severe pain (especially after eating or drinking), diarrhea, etc.

If it is crohns, the crohn's could be in an area where the colono-scope doesn't reach. The scope only goes into the colon and beginning of small intestines. After that, there's another 15-18 feet of intestines they can't reach!!!

Did you have an "upper GI small bowel follow through" barium xray? This may show some narrowing in the other 15 feet of intestines. Also, if you have pain above your belly button, they may need to do an "esophogogastroduodenscope", a down your mouth into your tummy. And I recommend they check you for H. Pylori.

Hope you get some answers soon!

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/6/2008 12:00 PM (GMT -7)   
CD is pretty hard to dx anyway, & I've found a lot depends on what your GI believes or expects to find. Which doesn't make sense, but there you are..

Matthew

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/6/2008 12:10 PM (GMT -7)   
I also did not test positive for the biopsy or the Prometheus test.  The Prometheus test showed UC and not sure what the biopsy showed, just not Crohn's.  But, I am dx as Crohn's.  Have had fissure, skin tags, fistula, all in the lg intestine with both constant ulceration and spotty ulceration.  I also could not take AZA, 6-MP, Asacol, Remicade.  Humira, mtx don't help.  Steroids too often, but at least they help when I'm on them.  (Poor bones)  Best wishes to you...

Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/6/2008 7:32 PM (GMT -7)   
If it helps, my doc said I was a cross between Crohns and Colitis. I do not have the ulceration in my small intestine, which tends to be seen with Crohns, but have ulceration, inflammation and bleeding in the lower GI, seen a lot with Colitis. He said the fact that I had a flare of inflammatory arthritis a year ago, paired with a sore in my mouth and a fistula, I showed indications of both diseases.  I was on pred for te inflammatory athritis at 60 mg, which makes you feel like you can conquer teh world, but as others mention, your bones and ball and socket joints can suffer with long term doses of pred > 30 mg (high dose).

Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.

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