I've been kind of lurking around just reading and decided to post!
My name is Danielle Im 21 and I was diagnosed with crohns when I was 12 years old, though I probably had it for about 1 1/2 years before that because I hid it. I am very bad with that.:shifty-t: I am a VERY shy person, don't like talking about my problem, I have a pretty high pain tolerance, so I tend to hide and put things off for as long as I can, which has gotten me in trouble a few times.
Anyway, for years I was put on a lot of different kinds of meds to try to find something that worked for me.Metronidazole, asacol, immuran, and more.. I was put on prednisone at high doses, including being hospitalized a few times for IV prednisone. It helped for the time I was on it(about 2 years) but stopped working soon after I stopped. I REFUSE to ever take this medicen again. I had pretty much every side effect possible from it, one of the worst being a huge moonface and I gained about 80 pounds, and at the time I was only 13 years old and in 7th grade, and kids are CRUEL. I went into "semi remission" for a few years. Meaning things were pretty much under control, but not 100%.
In 2006 I started to flare up badly again. One of my hardest things I suffered from were horrible mouth ulcers. I would literally have up to 20+ big ulcers in my mouth at a time. Constantly. I would never have a time where I didnt have them. If I had only 10 or so, I would consider that "relief". I lost a good bit of weight from this because it was so painful to eat with them. Then I started to bleed a lot. I hid this for a good while, and almost landed myself in the ER with a blood transfusion. We changed Doctors and he of course wanted to do a colocoscopy, and EGD...so those test showed that I was in a bad flare up and he wanted to do a CT scan and start me on remicade the next week.. He also said I had UC instead of crohns, which really confuses me as I was diagnosed with crohns, and have more of the symptoms of crohns than of UC, but not complaining. Anyway.. Well the next day after my colonoscopy, I started to have severe cramps, I couldn't hardly walk it was hurting so bad, so my Doctor tolded me to go to the hospital and they would do the CT scan that day, and probably start remicade that night. Well the CT scan didnt show nothing and I was given my first remicade treatment that night. Which I have no memory of because I was so drugged up from demoral.:shifty-t:
Anyway, remicade has given me back my life! I no longer live with mouth ulcers, I occasionally get 1 or 2, but compared to what I used to go through, this is NOTHING. I do not know how I used to live with them like I did! A month ago, I had to have another colonoscopy and EGD because I've been having problems, and I was afraid the remicade was not working anymore, but it actually showed my colon looks the best it has ever looked since I was diagnosed, and the problem that has been causing me so much pain the past year is a severe fissure. Besides that problem, its amazing how good remicade has helped me! I don't think I have ever heard the word "remission" since I was first diagnosed!!=)
So now we are looking into trying to get this fissure healed up. Thats my next hurtle to get through.
Anyway, thats just a very(VERY) brief summory over my struggle with this decease...
Just a little more about me. I LOVE animals. I work at a vet clinic and I do a good bit of everything there ranging from assisting the vet, either restraining, or prepping for surgeries, or bathing/grooming, kennel worker, janitor, you name it, I probably do it. My home life, I have 4 cats, 2 dogs(actually my parents dogs) a bird, chickens and ducks and I raise rabbits for show. So I have my little mini zoo at home that keeps me really busy. haha Other than that, im pretty plain!
My name is Danielle Im 21 and I was diagnosed with crohns when I was 12 years old, though I probably had it for about 1 1/2 years before that because I hid it. I am very bad with that.:shifty-t: I am a VERY shy person, don't like talking about my problem, I have a pretty high pain tolerance, so I tend to hide and put things off for as long as I can, which has gotten me in trouble a few times.
Anyway, for years I was put on a lot of different kinds of meds to try to find something that worked for me.Metronidazole, asacol, immuran, and more.. I was put on prednisone at high doses, including being hospitalized a few times for IV prednisone. It helped for the time I was on it(about 2 years) but stopped working soon after I stopped. I REFUSE to ever take this medicen again. I had pretty much every side effect possible from it, one of the worst being a huge moonface and I gained about 80 pounds, and at the time I was only 13 years old and in 7th grade, and kids are CRUEL. I went into "semi remission" for a few years. Meaning things were pretty much under control, but not 100%.
In 2006 I started to flare up badly again. One of my hardest things I suffered from were horrible mouth ulcers. I would literally have up to 20+ big ulcers in my mouth at a time. Constantly. I would never have a time where I didnt have them. If I had only 10 or so, I would consider that "relief". I lost a good bit of weight from this because it was so painful to eat with them. Then I started to bleed a lot. I hid this for a good while, and almost landed myself in the ER with a blood transfusion. We changed Doctors and he of course wanted to do a colocoscopy, and EGD...so those test showed that I was in a bad flare up and he wanted to do a CT scan and start me on remicade the next week.. He also said I had UC instead of crohns, which really confuses me as I was diagnosed with crohns, and have more of the symptoms of crohns than of UC, but not complaining. Anyway.. Well the next day after my colonoscopy, I started to have severe cramps, I couldn't hardly walk it was hurting so bad, so my Doctor tolded me to go to the hospital and they would do the CT scan that day, and probably start remicade that night. Well the CT scan didnt show nothing and I was given my first remicade treatment that night. Which I have no memory of because I was so drugged up from demoral.:shifty-t:
Anyway, remicade has given me back my life! I no longer live with mouth ulcers, I occasionally get 1 or 2, but compared to what I used to go through, this is NOTHING. I do not know how I used to live with them like I did! A month ago, I had to have another colonoscopy and EGD because I've been having problems, and I was afraid the remicade was not working anymore, but it actually showed my colon looks the best it has ever looked since I was diagnosed, and the problem that has been causing me so much pain the past year is a severe fissure. Besides that problem, its amazing how good remicade has helped me! I don't think I have ever heard the word "remission" since I was first diagnosed!!=)
So now we are looking into trying to get this fissure healed up. Thats my next hurtle to get through.
Anyway, thats just a very(VERY) brief summory over my struggle with this decease...
Just a little more about me. I LOVE animals. I work at a vet clinic and I do a good bit of everything there ranging from assisting the vet, either restraining, or prepping for surgeries, or bathing/grooming, kennel worker, janitor, you name it, I probably do it. My home life, I have 4 cats, 2 dogs(actually my parents dogs) a bird, chickens and ducks and I raise rabbits for show. So I have my little mini zoo at home that keeps me really busy. haha Other than that, im pretty plain!