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Regular Member

Date Joined Jun 2004
Total Posts : 25
   Posted 6/21/2010 11:30 AM (GMT -7)   
After a couple of years away from this board, hi everybody! You helped me a great deal. Recap: First CT in 2004 (ER) said probable crohn's. Oral antibiotics and GI referral; GI gave no treatment. Next CT in 2005 (ER) said probable active crohn's disease - very high white count - wanted to admit to hospital but I refused. Took oral antibiotics; colonoscopy has pic of inflammation in ilieum. GI wrote "probably crohn's ilietis." I got Pentasa. After a couple of months on Pentasa, had the upper GI done. Rapid transit (30 min to colon) but otherwise normal. Camera endoscopy - had a wild vomiting episode when the camera passed through the "bad spot" - report says normal (wasn't flaring), so GI says: no crohn's. I asked for sulfasalazine instead of Pentasa, since I also had arthritis. about a year later, doing okay. Then comes a rectal/perineal abcess episode, and the nurse practitioner at the GI office said: "you don't have crohn's, here are some antibiotics." No follow up appointment. Went to rheumatologist and got on Humira for inflammatory arthritis/AS. The tummy has done fairly well on Humira, probably a coincidence (sarcasm) tongue
That was 2 years ago (no GI visits), and I've done pretty well except for still having to irrigate in order to eliminate (no signal). Wondering about colonic inertia. Since I have dilitation of the perineural root sleeves (or Tarlov cysts) on both sides at S2, also wondering about cauda equina syndrom, since the numbness around by bottom can't always be ignored and the bladder is getting a little numb and weak . . . . Anyway, going to a new GI in August. Any ideas on how to start off my relationship with her without sounding like an angry old woman (which I am)?

Regular Member

Date Joined Mar 2010
Total Posts : 303
   Posted 6/21/2010 12:43 PM (GMT -7)   
First and foremost let me warn you that I am a huge anal retentive nerd. What I do every time I see a new doc is I take a printout of my medical history. Every drug I have been on, every major symptom..etc..this keeps me organized and I know I am giving the doc all the info that they need.  Many times when you see different doctors they can't piece togther what might be wrong because they might only get symptoms specific to their specialty. I also bring print outs of any supplement I am taking. Please refer to above when I warned you I was a huge nerd. But I am sooo afraid of drug interations I want specifics of what I can take, how long do they need to be spaced out..etc.. This might help you bring up all your points in a clear concise way. Many times when I do it from memory I forget something and walk out of the office going DOH!!!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening

Regular Member

Date Joined Jun 2004
Total Posts : 25
   Posted 6/21/2010 1:24 PM (GMT -7)   
Ha! Great info. I did finally put all my records into a binder. I waited awhile before I put in lovely dividers for the sections, not wanting to be an anal nerd. But I have joined the ranks, and we aren't bad company. Thank you so much for your reply.
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