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Have had Crohn’s since about 1774; dx finally in 1982; colon removed & with rectum saved & re-attached to small intestine; another surgery to remove diseased J-loop to remove; another for badly inflamed, diseased, small portion of small intestine around anastomosis site then Cholecystectomy. All in the 1980’s. Treated w/o success with every drug available during that eara. High doses of prednisone on & off and many, many, many months of elemental feedings to calm inflammations.
Since 2,000 I’ve dealt with constant diarrhea on my own by watching my diet, using anti-diarrhea drugs and a life-saving bidet!
In 2005 I developed serious acute episodes of pancreatitis followed each time by hospitalizations of at least 30 days. This pattern lasted approximately 7-8 years. Naturally, I developed Chronic Pancreatitis during all of this. No underlying reason has ever been found as to the causation of pancreatitis. I still have Crohn’s D. inflammation & mild-moderate episodes of pancreatitis but I’m so very tired of Hospitals that I treat myself at home by not eating until the pain resolved enough to do so (unless it’s too severe to do so).
I’m extremely leery of taking any biologics as past side effects of drugs have caused too many problems in the past. My GI specialist is younger and rather adamant I use Stelera but I’ve been used to treating / living with this common inflammatory state so resist her efforts. I am a bit uncertain about what is best since none of my previous GI’s have ever indicated they would be any less risky for me than doing nothing. I rather not worry about all getting CA, lymphoma, etc. from any biologic when I’mso used to my life-style and personally believe most of my diarrhea is a plumbing issue vs. an increased inflammatory state. I tend to think my GI Dr. simply isn’t familiar with my history, nor cares, to take it into account — she hasn’t treated me long enough to know when I do or don’t have increased inflammation in yearly scoping. Not to mention she contraindicates what she tells me.
Thanks for letting me VENT 🤗!
(I’m fairly certain ACCUTANE may have even caused me to have Crohn’s since I was the 1st generation of patients to take it and it was prescribed at the highest dosage possible (I think it was 80 mg.) for several years.
USA: South