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Maybe it's NOT Crohn's?

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Crohn's Disease
Do you think I have Crohn's?
yes - 100.0% - 2 votes
no - 0.0% - 0 votes
food allergy possibly - 0.0% - 0 votes
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Posted 2/1/2012 8:30 PM (GMT 0)
I have been diagnosed w/Crohn's but just don't feel that I have it. Has anyone ever been diagnosed and then it ended up being a food allergy or something else causing ulcers? It started Jan 2011, when I got bronchitis and took a Z-pak. Tested negative for C-dif. March 2011 - colonscopy - found ulcers in large intestines. GI said I had acute colitis, one time thing and will not come back. Prednisone kicked it and I was healthy and not on any meds from June - October 2011. October I started having diarrhea again, went to another GI Dr. and she started me on Aprios. I had a 2nd colonoscopy in Nov. 2011, this time showed ulcers in small and large intestines. Started Prednisone and finished it on 12/26/11. No diarrhea since then but I did have 9 days of nausea and vomiting a week about two weeks ago which sent me to the ER two times for fluids. I also got a CT scan, which showed NOTHING wrong with intestines, not even inflammation. So, I had my gall bladder tested last week but it is not the problem, it's functioning properly. All blood work throughout the entire year always comes back normal but sometimes shows a little inflammation. I have had no other symptoms, no fever, ulcers in mouth, etc. Do you think it's really Crohn's? I have never had bowel problems like this. I have 2 second cousins that have had ulcers and bowel issues. One is now gluten free and no problems, the other drank Aloe vera juice and all of her problems went away. My doctor wants me to start on Humira shots but I don't want too!
Posted 2/1/2012 8:41 PM (GMT 0)
swmilam, trust the diagnosis made with biopsy. There are other meds out there besides Humira if you don't want to do shots. You should not be cycling between Prednisone and nothing. You need a maintenance program. Has your DR talked to you about 5-ASA meds like Pentasa?
Posted 2/1/2012 8:56 PM (GMT 0)
I have been on Apriso since November. I am also now on hyoscyamine and prevacid. The biopsies from my 2nd colonoscopy were not conclusive of anything. Oh and I also had the blood test done testing for antibodies for Crohn's and Ulcerative coliltis and it was negative, meaning my body does not produce the antibodies for either of these.
Posted 2/1/2012 9:10 PM (GMT 0)
The blood test is not conclusive. Apriso is only active in the colon - for Crohn's disease in the small bowel you need a medication that is active in the small bowel. Pentasa is the only 5-ASA med I know of that is active in the small bowel.

Prevacid is used to treat acid reflux. Do you have upper gastric pain from acid reflux? If the prevacid is not helping you then stop taking it, and try another. Often we are responsive to one kind of proton pump inhibitor (ppi) and not another.
Posted 2/1/2012 9:22 PM (GMT 0)
I do not have upper gastric pain. My Dr. said it would help with acid in my stomach though. I'm really not sure why I'm on it! Nothing makes sense, which is why I do not think I really have it! I have never been anemic, never had a fever, never had ulcers in my mouth, etc., etc., etc.,
Posted 2/1/2012 9:39 PM (GMT 0)
Prevacid is not a Crohn's medication and if you don't think you need it then stop taking it.

I've never had a fever from Crohn's either. I get ulcers in my mouth when I get a virus, get my period, eat too many lemons.

I've been anemic many times over my life and my DRs always blamed my menstrual cycle. I didn't get diagnosed with Crohn's until I started having rectal bleeding. We all have different stories and different symptoms. Hang out here for a while and see how many people you'll meet with stories just like yours - and then a whole bunch more with completely different experiences.
Posted 2/1/2012 9:43 PM (GMT 0)
Thank you!
Posted 2/2/2012 4:10 AM (GMT 0)
My CD has been treated successfully with antibiotic combos, diet, and predisone. My symptoms improved with a gluten free diet. This board has CD that affects them differently and in various severity. We all have CD. Can people be misdiagnosed? maybe..Just because your CD follows a pattern of symptoms and severity of symptoms does not mean you don't have CD..Different doctors follow different methods of treatment per your severity and symptoms. There are some members on this board that are treated by nature-pathic physicians even..I can't vote yeah, nah, or possible food allergy if I truly don't know you or live in your CD experience..It would be a complete guess..
Posted 2/2/2012 5:16 AM (GMT 0)
Welcome to HW.

Doesn't hurt to try gluten free, even temporarily. You also might want to try dairy free at the same time.
I suggest you get on some proper treatment though, if not humira, there are other meds for CD. Ask your GI about imuran.

Please don't rely on a poll here to diagnose you for Crohn's. If you don't trust your doc, get a second opinion. :-)

Good luck!
Posted 2/2/2012 1:53 PM (GMT 0)
Please believe your Crohn's diagnosis.

The standard list of symptoms for Crohn's is just that: a standard list. Not everybody will have all of the symptoms on it. To this day, I've never had mouth ulcers and have had blood in the stools only extremely, extremely rarely. Other symptoms of Crohn's did not manifest themselves for me until years after diagnosis: fevers, abdominal pain, anaemia. Basically, I was a far milder case than you when I was first diagnosed; the only symptom I had was diarrhoea.

Secondly, a clean scope does not mean you don't have Crohn's. Crohn's disease comes and goes all the time, either spontaneously or after going on medication. If you had evidence of Crohn's disease in the past, that means you still have Crohn's disease - and if any doctor tries to tell you otherwise, then they are an idiot and their opinion should be discounted. Crohn's is a lifelong condition. It may go into remission, sometimes for years at a time, but it does not go away forever.

Finally, I can well understand your reluctance to go on Humira and I'm not gonna try to twist your arm into taking it. But don't automatically discount it either. There is some evidence available that hitting Crohn's hard early on with the 'big gun' drugs puts it into remission faster and for longer than *****footing about with the milder drugs. If I could go back in time and choose my treatment, I would choose to be treated with a big gun treatment from the start or, the least, 6MP or Imuran.

Good luck...
Posted 2/3/2012 5:29 AM (GMT 0)

 I think it is normal to be in denial, I was and it is right to question. I was told I had CD about 9yrs ago & it seems I may not have it. If you are a female like me I had " flairs" every time I had my cycle & the Dr.s didn't believe me after 4mo they started too. You know you body! I took pentasa, remicade infusions & imuran not to mention prednisone & iv steriods (30 pills a  day & infusions!!!)  Ct scans, swallowed a camera, xrays, more nasty barium than I care to mention & upper & lower scopes! I finally had them put me on deproprovera stopped my cycle & felt better! When my ca125s kept coming back high (ovarian cancer blood test) We ( Obgyn & me) decided to have a Hysteroctomy funny thing next to no GI symptoms left except a little stress realted irratable bowel stuff & I had that all my life. No meds for CD now, but I now have been told I have UCTD lucky me. My point is YOU know YOUR BODY. find a Dr who will work with you try the meds but stay off of the pred as much as possible it has it's own bad side effects. BTW My GI Dr retired & told me at my last apt. "maybe you never really had Chron's" Duh  Wish you luck & be your own advocate.

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