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Crohns/Fistula/GI/Help!
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kjsimps posted:
Hi! My husband was diagnosed with Crohns last year after a pretty severe flare-up landed him in the hospital. We were shocked by the diagnosis. My father also has Crohns but has a wonderful GI and has made great progress with treatment. My husband was referred to a GI center locally, and the Dr. that he is seeing is not being very helpful. My husband has a pretty bad anal fistula that is pretty nasty and will not clear up, he has had it for a very long time. He started to have a flare-up about a month and a half ago and he has been absolutely miserable since. He has severe pain in his intestines and constant diarrhea. He can't eat, and has lost like 25 pounds. He looks and feels terrible. He saw his GI 2 weeks ago and he told him that his only option was Remicade. My husband did a lot of research on Remicade and decided that it was not a course of action that he was willing to take because of the potential side effects and long-term effects. Because of this decision, his Dr. basically wrote him off and flat-out told him that basically, if he's not willing to do the Remicade then he isn't going to help him. He prescribed him sulfasalizine 3 times a day but it was making him so incredibly sick that he is only taking it once a day right now. He was throwing up every time he took it, couldn't eat, and felt awful all of the time. The fistula he has is in bad shape, he said it feels like poop comes out of it every time he goes to the bathroom and it hurts a lot. My Dad asked his GI about fistulas and she said that it should be surgically dealt with, but my husband's GI said that no GI would be willing to do surgery on him as a Crohns patient b/c he won't heal correctly. He refused to prescribe any form of pain medication because in his words, it "doesn't treat the disease" but my husband is in constant pain. He can't even sleep. He is exhausted and sick and miserable and I feel so bad for him. If he looses any more weight he will disappear. I don't know what to do for him at this point and frankly, I feel that the GI center here is being paid to push Remicade, as it is all over their website, their office, and it is the first thing they throw out as a treatment option. Because of my Dad's Crohns experience over the last 15 years, I know that there are many other treatment options available that are effective with less severe side effects. I'm wondering if this GI Dr. is just being dismissive as I suspect, or if the prognosis of Crohns really is this grim. He's been miserable for over a month now - he's 29 years old, this just seems ridiculous now. Advice?
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