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Gastroenterology  (Expert Forum)
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Misdiagnosis of Crohn's???
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MedHelp Member's Question

Misdiagnosis of Crohn's???

by Rhonda528, Sep 13, 2002 12:00AM
I was diagnosed with Crohn's disease two years ago, but nothing puts me in remission. I eat a low residue diet and I have been on Asacol, Prednisone (for the last 8 months), along with 6MP (which I stopped taking recently because I had a toxic level in my blood) and I have had five Remicade infusions. I am starting to think I have been misdiagnosed. I took Flagyl for 10 days and felt GREAT, but as soon as I stopped, my symptoms returned. Has anyone else had a similar experience? Thanks!
Member Comments (22)

by szilli27, Sep 13, 2002 12:00AM
I have been going thru the same thing, except I have had 5 surgeries, and I still have not found remission with all of the drugs I have been on and just found out that something may now be wrong with my liver. You're not alone, especially if you DO have Chron's, it's a very tricky and complicated disease.

by RTFLY, Sep 14, 2002 12:00AM
To: rhonda528
I agree with szilli27 when they said that Crohn's was a tricky and complicated disease. I suffered for years with ulcerative colitis and I am also a medical professional, so I dove into my medical books before I had surgery and did A LOT of reading about IBD. Also, kimbacat who is a regular in this forum, I think she suffers from Crohn's and may have some helpful tips. I do know that the medical treatment you are on is textbook for most patients. I thought that Pentasa was a better 5-ASA drug for patients with Crohn's, but your doctor knows best (Asacol is a 5-ASA drug that is time released in the terminal ileum and large bowel). The research on Remicade infusions also supports that this usually helps patients with active Crohn's. I am sorry to hear of your struggles. I know how frustrating it can be. After 2 1/2 years of 22 pills a day including 60mg of prednisone and 3.6gms of Asacol(12 pills) and 150mg of 6-MP and 3 Remicade infusions...I finally said "screw this" and had surgery. BUT...again, I had ulcerative colitis. Crohn's is a different ballgame. As for the Flagyl, that is an antiprotozoal and antibacterial drug that acts against certain anaerobes and protozoal parasites. Are you sure you didn't have a bowel infection? If you responded well to the Flagyl that would certainly be something I would tell your doctor. That may signal something was causing your Crohn's-like picture. I hope you get the answers you need and feel well soon. Good luck...

                                                    JCI

by kimbacat, Sep 14, 2002 12:00AM
Hi Rhonda,



speak of the devil, and here I am :)



I have Crohn's disease too.  couple of things come to mind.  you didn't mention what your symptoms are.  cause sometimes some of the symptoms can be treated separately.  how was your dx made?  thru biopsy reports?  because that is usually the definitive way to dx.  and if you had biopsies done, you can always send the slides to and IBD pathologist for a second opinion.  Flagyl and Cipro do help some people with CD.  while Flagyl can have some pretty nasty side effects, some docs will prescribe Cipro long term for maintaining remission.  when you said you stopped 6mp cause of toxic levels, where you referring to metabolite levels based on the tests by Prometheus Labs?  were you having any other problems/side effects from the 6mp (nausea, vomiting, elevated LFTs, etc)?  did you try to lower the dose first to see if blood work improved?  is your disease primarily in your colon? mostly distal?  or is it in your small bowel?  cause where your disease is, will determine which 5ASA formulation would be best (Asacol vs Pentasa vs enemas vs suppositories).

by kimbacat, Sep 14, 2002 12:00AM
sorry, got interrupted and didn't want to lose what I had already written.  



have you tried azathioprine (supposedly the 'kinder', 'gentler' form that breaks down to 6mp)?  have you tried methotrexate?  have you had stool cultures done to rule out bacterial overgrowth or bacterial infection?  have you been tested for Celiac disease?  



I think I've run out of suggestions.......



I hope some of this helped.  like the others have said, and to put it bluntly, it's a sh*tty disease.  it acts differently in just about everyone, so treatment has to be individualized.  good luck

by RTFLY, Sep 14, 2002 12:00AM
To: rhonda528
See...I told you kimbacat would have some suggestions...all of which are great suggestions. There are alot of things you may need to examine and find out before you assume you were misdiagnosed. Again...good luck and take care.

                                                 JCI

by ttcoffin, Sep 15, 2002 12:00AM
To: kimbacat
I was reading your post to someone else and found it interesting. My husband was diagnosed with crohns about 3 weeks ago. He had a colonoscopy and biopsy's came back negative but showed all the symptoms. So his gastro doc ordered the prometheus blood test. It came back saying that flags showed up a 94% chance of it being crohns and the other 6 % could be colitis. So the doc has him on Pentasa for the crohns. It is making him more regular and easier for him to go and helps the intestional pain some. I was wondering if you have ever heard of crohns NOT showing up on biopsy's but on the prometheus test?  Thanks for anything you can pass along to me..........Tanya

by RTFLY, Sep 15, 2002 12:00AM
To: ttcoffn
If I may share my experience with you. My biopsies, later in my disease(I had ulcerative colitis), started to show more of a Crohn's pattern than an ulcerative colitis pattern. All other colonoscopy's I had previously showed UC.  My doctor began to worry if maybe we were dealing with Crohn's Colitis. So, he sent my blood off for Prometheus Testing and it came back as 86% ulcerative colitis. After I had surgery, the surgical pathology showed almost 100% probability of ulcerative colitis. So, I would imagine that Crohn's may be as decieving as ulcerative colitis can be on biopsy studies. If your husband responds well to the Pentasa and Prometheus showed 94% probability, I would THINK that may be pretty accurate for Crohn's. Again I don't, nor did I, suffer from that form of IBD so my assumptions are just that. Hope kimbacat can offer more help. Take care...



                                                  JCI

by ttcoffin, Sep 15, 2002 12:00AM
To: RTFLY
I very much appreciate your post. It has taken almost 4 years to get this diagnoses, so we are happy to have one. All the other gastro docs we saw, would do the colonoscopy and biopsy's, and when they came back ok, that would be it. They called it IBS. Well, this new gastro doc is really good and she didn't stop there. He had an upper GI with small bowel follow through and it showed his intestines healthy. The radiologist lady said that it showed no crohns but maybe it just hadn't done any damage yet. Everything is so confusing, just depends on who you talk to. But yes, he is responding to the pentasa. He is scheduled for a liver biopsy in a week though. Has upper middle pain, it is getting really bad and Iam trying to get him to go to the ER when it gets sooo bad but he wants to hold out dor the biopsy. He is afraid the ER doc will just give him a shot of pain meds and send him home. I have always thought it sounded like his pancreas but they are thinking more liver, because of his blood results. Thanks again for you post. By the way, would you happen to know if a bad liver