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Help!!! Tired of getting the run around..?

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Crohn's Disease
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Posted 10/3/2007 4:08 PM (GMT -8)

Oh so this is what has happened.. 2 years ago I was diagnosed with Crohn's Disease. Well my dr sent me to a gi who could not fix me so he sent me to an IBD specialist who said even though the ct entogeraphy (sp) showed inflamation and mucus consistant with cd and they was inflamation in my colon and stomach the biopsy says that it is not crohns. Now my thought is unless they can biopsy every single inflammed spot how can they say for sure that is not crohn's. He said he thinks it is IBS now and put my on antibiotics used to treat e-coli (which i do not have). He said if that does not hurt he will have to send me to another gi who only does ibs..
Ok so to sum up.. Is he just giving me the run around cause he does not want to take the time to help me?
What do I have? I am confused... Is anyone else going through this..
What do you think I have? What do you think I should do?

Posted 10/3/2007 4:35 PM (GMT -8)
Hi poobear, Have you had a colonoscopy test done? That is one way to see if you have Crohn's.
Also I would recommend getting a new Gi doctor. I hope things get better for you.

teddybear
Posted 10/3/2007 4:56 PM (GMT -8)
I have been living your life for the past 6 years. I know how frustrating it is. I have reserved myself to just wait until I develop an obstruction as I really do not know what else to do. My crappy insurance makes me use the small town hospital I work at and the only GI we have says IBS. about 3 years ago a went to a university hospital after waiting 6 months for an appointment and had the specialist summerise my previous test results for me. Thats it. Like I really needed her to explain my previous results. I have not been to another GI since. IMO, IBS is a cop out diagnosis.
Posted 10/3/2007 5:02 PM (GMT -8)
I have had 2 colonoscopy's 1 showed inflamation in my terminal illium 1 showed inflamation in my colon, 1 endoscopy that showed gastritis and inflamation in my stomach. 1 sbft which showed crohn's and 1 ct entography that showed inflamation in my term illium and mucus consistant with crohns.

Thanks
Posted 10/3/2007 6:38 PM (GMT -8)
Ok, so can some of the veterans help me out here? I thought that one of the main differences between IBS and IBD was that IBS never shows any inflammation. Am I wrong about this?

Posted 10/3/2007 6:53 PM (GMT -8)
Good question browneyedgirl? Wish I knew the answer, but it seems I've heard that too.

Poobear- I don't know if you are stateside or not, but if it were me, I would consider trying to get an appointment with the Cleveland Clinic or I believe there is also a Clinic in Florida that is highly known for treating this kind of GI problem. Sure sounds like CD to me. It took me 5-6 years to get my diagnosis because I thought all my symptoms were related to peri-menapause and kept going to a GYN that thought I was crazy to think I was even in that stage of my life. Guess what, I was, I am and that is in addition to the CD. Hang in there and don't give up! If your finances are an issue, you may want to consider some of the studies offered by educational/hospital institutions such as the Cleveland Clinic as well. They usually pay not only for your treatment but your travel and hotel stays as well. On the HW homepage there are resource links that give you the current "open" medical studies available and who/where to contact. I know this is a route that many do not support but it is an option to be considered. I once had to take my daughter every 3 months to NIH in Bethesda, Maryland for treatment for a non CD related medical problem and now that she's 29 and looking back, I'm so glad I did. Her condition was rare and we could not find medical support in my regional area. While a hospital that big is intimidating at first, I could not have found more caring and supportive people in my time of need. Good Luck to You, We are always here!
Posted 10/3/2007 7:30 PM (GMT -8)
I found this on web md
IBD versus IBS
Is inflammatory bowel disease (IBD) the same thing as Irritable Bowel Syndrome (IBS)?
No. Inflammatory bowel disease, including UC and CD, is different from irritable bowel syndrome (IBS). Unlike IBD, IBS does not cause inflammation, ulcers or other damage to the bowel. Instead, IBS is a much less serious problem called a functional disorder. This means that the digestive system looks normal but doesn't work as it should. Symptoms of IBS may include crampy pain, bloating, gas, mucus in the stool, diarrhea and constipation. IBS has also been called spastic colon or spastic bowel.

I am working on finding a new gi as we type..
Posted 10/4/2007 6:59 AM (GMT -8)
GOOD FOR YOU, POOHBEAR!!!! Good luck! If you are closer to Mayo Clinic, Rochester, MN they have the leading gastro department in the nation and have for years (CC is #2). Believe your body, it knows more than the doctors.
Posted 10/4/2007 12:08 PM (GMT -8)
Hi As someone who had IBS for 27 years I am glad you are not going to sit idle and take a IBS DX if you have Inflam. IBS is supposed to be caused by the nerve endings not inflam. so keep trying. lol gail
Posted 10/6/2007 3:30 AM (GMT -8)
I have learned at a late age to ask for what I want instead of not wanting to annoy the doctor or hoping he will understand my concern. So, after almost 10 years and 2 gi docs I came out and asked" Would it be ok for me to try a medication that is usually prescribed for crohn's to see what happens? Is there any danger in that? the last doctor I went to was considering that but it never got that far." This seemed to work for me. Other than time and some increased gi symptoms (which the last gi finally said was IBS) nothing else had changed in my condition, other than me coming out and asking if I could try a trial medication. All he can do is say no.
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