I am a 37 year old female who has had Crohn's Disease for about 14 years. The title of my story thread is the motto I try to live by, though during a flare up it's difficult to keep up the optimism. I'm in the midst of a mild flare right now. I've had 3 infusions of Remicade, and have one more to go. In December, my doctor discovered that I have 4 tiny fistulas connecting my small intestine to my colon. He said that if the Remicade doesn't close the fistulas, I will have to have surgery. I have 4 more weeks until my next infusion of Remicade, then I guess we'll go from there.
I've been blessed in that I've only had 3 flares in the 14 years I've had the Crohn's. When I was first diagnosed in 1999, I was so sick by that point I thought I was going to die. It took a while to find the right combination of medicines, but when we did, I went into remission until 2006. At that time I was on Imuran and Asacol.
That flare happened because I came off the Imuran and the doctor didn't feel the need to explain to me what would happen if I did. But I wanted to get pregnant and didn't want to be on Imuran while pregnant. It took a few months to get out of my system, and I started to lose weight, lost my appetite, and eventually the fevers and diarrhea and abdominal pain kicked in. At my worst, I'd lost 30 pounds and had two different hospital stays in one week. After several months back on Imuran (with some Predisone and Budesonide thrown in), I went back into remission and stayed for almost 5 years until this latest flare.
This time it completely snuck up on me. With only occasional diarrhea and eventually acid reflux, I waited longer than I should have to see my doctor.
But I've learned that the disease, at least in my case acts differently each time it flares up. That's why it blindsided me this time.
I never could get pregnant, not even after 3cycles of invitro fertilization. My gastro said it could have had something to do with the medications I've taken.
Anyway, I have a long history with Crohn's, and I've studied it and read everything I can get my hands on about it. My advice to anyone new to the disease is to do the same. And be your own advocate because no one else is going to do it for you. If you go to a doctor that's not a gastroenterologist, they might know a little about it, but not enough. I've run into this several times. Having a doctor try to give you a prescription for something that could irritate the Crohn's is very dangerous, so you need to know what you can and cannot take. If you're not sure, ask your gastroenterologist.
That's another very important lesson to learn. Find a good doctor. One who is willing to listen, and be there when you need them. It took me 3 doctors before I found the right one for myself.
I could keep going, but this has gotten really long. I welcome anyone who wants to contact me. If I can help anyone at all I'd be happy to!
Currently taking:
Imuran 150mg per day
Lialda 2.4gm per day
Remicade one more infusion
Have taken in the past:
Predisone
Budesonide
Asacol
Flagyl
Cipro
I've been blessed in that I've only had 3 flares in the 14 years I've had the Crohn's. When I was first diagnosed in 1999, I was so sick by that point I thought I was going to die. It took a while to find the right combination of medicines, but when we did, I went into remission until 2006. At that time I was on Imuran and Asacol.
That flare happened because I came off the Imuran and the doctor didn't feel the need to explain to me what would happen if I did. But I wanted to get pregnant and didn't want to be on Imuran while pregnant. It took a few months to get out of my system, and I started to lose weight, lost my appetite, and eventually the fevers and diarrhea and abdominal pain kicked in. At my worst, I'd lost 30 pounds and had two different hospital stays in one week. After several months back on Imuran (with some Predisone and Budesonide thrown in), I went back into remission and stayed for almost 5 years until this latest flare.
This time it completely snuck up on me. With only occasional diarrhea and eventually acid reflux, I waited longer than I should have to see my doctor.
But I've learned that the disease, at least in my case acts differently each time it flares up. That's why it blindsided me this time.
I never could get pregnant, not even after 3cycles of invitro fertilization. My gastro said it could have had something to do with the medications I've taken.
Anyway, I have a long history with Crohn's, and I've studied it and read everything I can get my hands on about it. My advice to anyone new to the disease is to do the same. And be your own advocate because no one else is going to do it for you. If you go to a doctor that's not a gastroenterologist, they might know a little about it, but not enough. I've run into this several times. Having a doctor try to give you a prescription for something that could irritate the Crohn's is very dangerous, so you need to know what you can and cannot take. If you're not sure, ask your gastroenterologist.
That's another very important lesson to learn. Find a good doctor. One who is willing to listen, and be there when you need them. It took me 3 doctors before I found the right one for myself.
I could keep going, but this has gotten really long. I welcome anyone who wants to contact me. If I can help anyone at all I'd be happy to!
Currently taking:
Imuran 150mg per day
Lialda 2.4gm per day
Remicade one more infusion
Have taken in the past:
Predisone
Budesonide
Asacol
Flagyl
Cipro
