Posted 11/3/2019 9:04 PM (GMT -7)
Hi Susie, thank you for your reply!
I’ve done Remicade (severe allergic reaction brought that to an end) and Humira (didn’t help). 6mp and Imuran both made me feel like garbage 24/7. I only have Medicaid for insurance, so my medication. options are limited. Same with the GI, the good ones don’t take Medicaid. I had a scope just over a year ago which showed no inflammation. My last several scopes were good. But then my gastroparesis hit hard, and I had to change my Crohn’s friendly diet to Crohn’s unfriendly nutritional drinks (so much sugar and dairy). I am seriously underweight, and since my GI (actually her assistant, I only get to see the real GI for scopes) thinks it’s a mental issue, she wanted to have me hospitalized with a feeding tube last summer. If I can’t absorb the calories I’m consuming now, I don’t see how a feeding tube is going to help, so I declined her insistence on weekly weigh-ins (give me a freakin’ break!) and haven’t been back. But now I have to go because of the fistula. I’m sure she’ll give me a ration of crap for not doing her weigh ins, but I’m going to bring my mom with me, so maybe she’ll lecture me less with an audience.
I’d do TPN, but I would need both a doctor to order it, and my insurance to cover it, both of which are iffy.
I read several threads here that had people with vaginal fistulas, and it sounds as if plenty of them dealt with them for years without repercussions. Makes me feel a little better, because when I posted this question at another forum, the responses were all “Go to the ER immediately!” I have serious hospital phobia and don’t think I could cope with it.