Results of my GI visit from Monday 8/30/10

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Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 9/2/2010 4:10 PM (GMT -7)   
Well, I finally went back to the GI - it had been a year or so since I last saw him. I went to my rheumy this spring because I was so frustrated with my knee and lower back pain, and after helping me understand those problems he strongly encouraged me to follow up with the GI. He seemed annoyed that I am taking so many meds and the GI was not keeping up with my blood work.

Anyway, this is my 3rd GI in 10 years (I started down the diagnostic road in '00, getting my first IBD diagnosis in '01). I like him. He's very conservative about meds (I've never progressed beyond the 5-ASAs). Last year he added sulfasalazine to help with joint pain in my wrists and hands, but other than that he's done nothing to my prescription plan.

So we met. I happen to be having some more problems than usual so I got to complain about how tired I am, no appetite for 5 days, a little blood last week....all in all, I'm really doing fine for a Crohnie but it still sucks sometimes.

He did tell me to take my 6 capsules of Pentasa in a 3-morning/3 night plan, just like some of you are doing - hallelujah! Now I can get my whole dose without forgetting. I asked him about moving up the list of meds to address my sacroileitis, and he just about freaked out. He's had a few patients with nasty, nasty side effects and he basically said unless I came to him having lost 30 lb and diarrhea 15xday he wouldn't change a thing. sigh.

He ordered some blood work (full count and metabolic panel) and we'll see if anything turns up there. The highest my CRP has ever been is ~4.

I'm going to see how my new Pentasa plan goes; maybe getting my full 3 g in every day will resolve some of these lingering problems. If not, I think it's time to try out GI #4, at least for a second opinion.

What do you guys think?
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Post Edited (kazbern) : 9/2/2010 7:29:41 PM (GMT-6)

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 9/2/2010 4:45 PM (GMT -7)   
It sounds like to me that he is not treating the disease but the symptoms. If you are having bleeding you are slowly doing damage to your guts. My opinion is the best course would be trying to keep the disease from doing damage. I lost half of my colon because the disease wasn't being treated. I never had bleeding and only had "d" a few times a day. If you have fatigue and are bleeding you should probably be on something stronger then Pentasa.
Started having issues with the Big "D" at age 19.  Doctor said Lactose Intolerance
Daugher diagnosed when she was 12 and I was 33.
My doctor said I had IBS.
8-2006    Emergency resection for fistula to bladder at the age of 47.
"Oh, it is Crohn's"     Dah!!!!
11-2006   Reaction to 6mp - isolation with bone marrow suppression and found out I had steriod induced diabetes.  Yeah!!!
4000mg of Pentasa only for Crohn's
Cymbalta, Metformin, Lipitor, Lisinopril
Update.  6-10-2010  Started remicade today.

Veteran Member

Date Joined Mar 2007
Total Posts : 1632
   Posted 9/2/2010 5:57 PM (GMT -7)   
I agree. I think you need to be on something stronger.
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