My husband was diagnosed with Crohn's in June 2011 after over 6 months of symptoms. The diagnosis went from gastritis to IBS to Crohn's. His doctor tried all sorts of treatments including entocort and even effexor (an antidepressant his GP claimed helped "calm the bowel").
My husband didn't involve me at all at first, didn't tell me about certain tests (barium enema), and didn't tell me he had vomiting after all his various preps and barium drinks. I asked him why he didn't tell me, and he said "I just didn't want to bother you with it." That hurt me a bit, because I just want to be there for him and be supportive. He doesn't need to be embarrassed, we are both Paramedics, so I understand all the crazy stuff doctors sometimes put patients through.
After we realized his GI doctor didn't really know how to handle my hubbies case was when he started taking me with him to all his appointments and tests. He must have realized I am there for him and am willing to help him fight for better care. He did admit I usually remember to ask questions he wouldn't have thought of, especially if he isn't feeling well at the time of the appointment.
So I finally am involved, and am much less anxious about his condition, and I think he is too.
He has Crohn's of the terminal ileum with one area of stricture, more than one internal fistula (entero-enteric), inflammation of the mesentery, and mild hydronephrosis due to inflammation compressing his ureters.
He is currently being treated with Imuran, Prednisone (slowly tapering, currently at 15mg), and xifaxan (a fancy antibiotic that stays in the digestive system)
I have not been able to find much info on internal fistulas. His GI (thankfully his new one is wonderful) claims that she has seen some fistulas close with the xifaxan. I am somewhat doubtful, because everyone online seems to say they needed surgery. Any info would be appreciated.
Anyway, the good news is my husband is currently feeling better than he has in a year, and recently gained 15lbs after losing almost 60 since January.
My husband didn't involve me at all at first, didn't tell me about certain tests (barium enema), and didn't tell me he had vomiting after all his various preps and barium drinks. I asked him why he didn't tell me, and he said "I just didn't want to bother you with it." That hurt me a bit, because I just want to be there for him and be supportive. He doesn't need to be embarrassed, we are both Paramedics, so I understand all the crazy stuff doctors sometimes put patients through.
After we realized his GI doctor didn't really know how to handle my hubbies case was when he started taking me with him to all his appointments and tests. He must have realized I am there for him and am willing to help him fight for better care. He did admit I usually remember to ask questions he wouldn't have thought of, especially if he isn't feeling well at the time of the appointment.
So I finally am involved, and am much less anxious about his condition, and I think he is too.
He has Crohn's of the terminal ileum with one area of stricture, more than one internal fistula (entero-enteric), inflammation of the mesentery, and mild hydronephrosis due to inflammation compressing his ureters.
He is currently being treated with Imuran, Prednisone (slowly tapering, currently at 15mg), and xifaxan (a fancy antibiotic that stays in the digestive system)
I have not been able to find much info on internal fistulas. His GI (thankfully his new one is wonderful) claims that she has seen some fistulas close with the xifaxan. I am somewhat doubtful, because everyone online seems to say they needed surgery. Any info would be appreciated.
Anyway, the good news is my husband is currently feeling better than he has in a year, and recently gained 15lbs after losing almost 60 since January.