Here goes! This is my first time on this site. So please be patient with me. I was diagnosed with Crohn's disease over two years ago. My wife has been on this site ever since. She would ask me to get on and discuss my disease but me in my stubborn wisdom thought if I didn't acknowledge I had Crohn's it would go away and leave me alone. Guess what that didn't work so here I am. Sick as can be. I do want to thank everyone at this site. Through my wife everyone here as been a wealth of information. You have all helped both of us understand the in's and out's of Crohn's and have given us more information than the three doctors I have. So much for Modern Medicine. Background info. is this. Two and half years ago I came down with Crohn's and have been in the hospital more times than I can remember and been through one re-section surgery. They've had me on so many different drugs I can't even remember half of them. Currently they started me on Imuran about one month ago and I had a very bad reaction. Fevers, nausea, fatigue, headache. They just pulled me off it after I questioned the side affects to the doctor. He sent to the hospital for test and sure enough my liver panels were through the roof. I am waiting to see his next move. What a struggle this has been. So I could go on but I'll save it for another time. Again thanks to all on this Web site. You are GREAT!
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Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
My story starts
- Thread starter rrbluesky
- Start date
SarahBear
Moderator
- Location
- Charleston,
Welcome to the forum! We're glad to have you here!
Have you taken any medications in the past besides Imuran? Do you have an appointment to see your GI?
I hope things go well for you!
Have you taken any medications in the past besides Imuran? Do you have an appointment to see your GI?
I hope things go well for you!
Hey RR, welcome to the community.
Glad you've found us. This is really a great family environment. I know exactly what you're experiencing. I had the same thought pattern as well. If i didn't acknowledge it, it would go away. Well, no, not how it works unfortunately. It will get easier to accept as time goes on, i promise. It's just a matter of staying strong and understanding what our body is telling us. No, it's not easy by any means. Please feel free to look around, cry, laugh, share and ask. We are here for you. Best of luck...thoughts and prayers with you! - hugs-
Glad you've found us. This is really a great family environment. I know exactly what you're experiencing. I had the same thought pattern as well. If i didn't acknowledge it, it would go away. Well, no, not how it works unfortunately. It will get easier to accept as time goes on, i promise. It's just a matter of staying strong and understanding what our body is telling us. No, it's not easy by any means. Please feel free to look around, cry, laugh, share and ask. We are here for you. Best of luck...thoughts and prayers with you! - hugs-
I've been on most of the standard med.'s with not much results. Got my current test results back. Imuran after 3 weeks give me severe Pancreatitis (spelling?). I could even walk after one week on that stuff. They wanted to put me in the hospital but I told them leave me alone. My stubborn streak! I felt good enough just getting off that junk. Still recovering. Really Doc.'s. Is this what we pay you for. I got caught in a barn fire 3 years ago and was airlifted to a Burn Center with 3rd. degree burns and had a terrible lesson learned about the Medical Industry, still have scars. I've learned to question everything the M.D.'s give me. All my office visited are voice recorded for future reference and when I get home I listen again to make sure I heard them right and note the prescribed treatment. Doctors seem to have selective memories as to what they said. The only med that seems to help me at this point is Questron or Cholestyramine. Without it I don't think I'd be here. I do eat sometimes and really don't now how I hold the weight I have. My one local doctor put me on what I call the "jelly doughnut" diet. She said better go out and gain some weight because "when-not if" you go back in the hospital you'll have something to lose. I told her guess again. So that my rant for the day. Good luck to all!
RR,
Wow, I'm sorry you're not feeling best and can't seem to find a " working" treatment. Stay strong and positive. Hopefully soon you will be on the road to recovery!! And feeling better. Muah-hugs-
Wow, I'm sorry you're not feeling best and can't seem to find a " working" treatment. Stay strong and positive. Hopefully soon you will be on the road to recovery!! And feeling better. Muah-hugs-
- Location
- Los Angeles
I wish that I had something more helpful to say. You have certainly been through a lot already.
Have you been able to find any dietary changes that help relieve your pain? Switching to a low residue diet, along with the Questran may help some. I know that you are wary of other medications, and I can certainly understand that...Are your doctors suggesting Remicade or anything else?
I hope you find some relief soon,
Lisa
Have you been able to find any dietary changes that help relieve your pain? Switching to a low residue diet, along with the Questran may help some. I know that you are wary of other medications, and I can certainly understand that...Are your doctors suggesting Remicade or anything else?
I hope you find some relief soon,
Lisa