Diagnosis and Hello again

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rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 9/27/2007 11:24 AM (GMT -7)   
Hello:
 
 I have been away for awhile but wanted to check in and say hello.  I got my official diagnosis of "inflammatory bowel disease, probably crohn's of the small bowel, based on positive reaction to medication" . Colonoscopies have always been normal and they never did the capsule endoscopy because he felt a trial of medication would be more reliable in my case.  I've been taking 500 mg pentasa three times a day since early May and it has worked very well. I don't think about my gut  much. Instead the problem is my feet- I have awful tendonitis. The podiatrist diagnosed it as atypical plantar fasciitis (no heel pain, all forefoot which refers pain up and around the lower legs), insisted it was a biomechanical problem, and the only thing he could recommend are custom orthotics at $400 which "might help" . I decided to hold off on those, have tried everything else. I just recently bought a $60 pair of orthotics from a shoe store chain which seem to be helping more.  I do yoga, sit with my feet on ice packs and just recently got a prescription for ultram. I'm thinking of adding acetominophen to it as I've read that the combo seems to work better, as is often the case in many other pain killers.   I suppose the next step is back to the rheumatologist but the gi office said NO NSAIDS. (I know this is somewhat controversial) so?????  I don't know what is down the road but at least someone has decided what is wrong with me.
 
Hello to everyone!  
 
By the way, Back when I visited the forum regularly we had a discussion about current travel restrictions and food requirements with IBD.  I traveled by plane in June. Restrictions on liquids included a maximum of 3 ounce containers, somethng like that. Well, everything on the market is 4 ounces minimum.  I had a separate lunch pack and when the inspector saw it, yelled out to another to inspect it personally. I just told him "I have a disease and can not eat airport food"  He asked me what disease that was and I said "crohn's". He said "ok, have a nice day"  So, that was that.  I didn't have a letter from my doctor (not required) but I had my meds and the info sheets that come with them describing what it is prescribed for but they weren't necessary.   I had items like yogurt, fruit cup, applesauce and a small juice.
 
Chris  
10 years, many tests, 3 gi doctors, no diagnosis yet.  Pentasa 1000mg 3x day


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 9/27/2007 11:28 AM (GMT -7)   
Oops- change that to 1,000mg pentasa three times a day. Each capsule is 500 mg
10 years, many tests, 3 gi doctors, no diagnosis yet.  Pentasa 1000mg 3x day


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/27/2007 12:07 PM (GMT -7)   
Well, I'm glad your medication is working at least. I'd love to find a doc that can judge this DD by something other than a scope & its results. Some gastros are positively addicted to the blasted things!


Matthew
PS.
My best Gastro based the CD dx on symptoms current & prior to my visit, including a complete health history.

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 9/27/2007 1:38 PM (GMT -7)   
My colonoscopies have all been normal (I've had 3) and the last two have had biopsies. My terminal ileum appears to be normal. The gi is basing his diagnosis on progression of symptoms over the years and the reaction to asacol (still had some pain with that) and then pentasa (very little pain). I realize it may not stay that way.

If I could guess where it is located, I would say higher up in my ileum and could be only at the microscopic level. Small bowel series (4 yrs ago) was normal but from what I understand, that is a crude test I had a CT Scan about 7 years ago which was normal but I've been told that is best for stricturing type disease.

There is no accepted standard protocol of treatment for these diseases so I guess the trick is to find someone willing to take a chance, think differently, etc. It took the third gi for me. Other doctors along the way have also suggested IBD. One rheumatologist (I have seen at least 4, stopped counting) told me I was on a search.
10 years, many tests, 3 gi doctors, no diagnosis yet.  Pentasa 1000mg 3x day

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