Hello All,
I am new to this forum but not new to the Ulcerative Colitis. I am 33 years old and I was diagnosed with Ulcerative colitis in 2007. I am from South-east Asia(moved to US 10 years back), so I was new to this disease, in-fact i haven't heard about this disease before. My GI specialist, compared this disease with BP/Diabetes to explain it to me about this disease and it's impact on my life. Finally, I could conclude from the conversation that it is going to stick with me for life long. Initially, I was treated with Predisone, Canasa and Colazal. I have responded well and within a 2 months the disease was in control. I was in remission for 2 years and again in 2009, I had flareup's. This time predisone did not go well with me. I had lot of acne all over my body and face. I stopped the medication but continued to use Canasa and Apriso(Instead of colazal). I was in remission for 2 more years. Again, I got the flareup's last year. This was very long flareup. Finally, my GI specialist has suggested Purinethol 6MP last month. I took this tablet for 7days along with canasa and apriso, the side effects are horrible. I lost my Hair, it was very emotional to me. I stopped the medication in 7 days. With in 4-5 days, I lost complete hair(Finally, I have to shave my hair), I had black spots on my tongue, and severe acne on my face/body. Strangely, i have black spots on my palm. Even though, my wife is very supportive but i could see the scariness in her eyes. My wife thinks, I have cancer and I am hiding that from her.
This medication has changed my life completely. I lost my weight 15 pounds in 7-10 days. It's been 4 weeks since I shaved my head, even now, my hair is not growing uniformly, there are some some spots its not even growing. I dont know if I will ever get my hair back. I have gone through the side effects for purinethol and they dont have all these side effects on their website.
Now, my GI specialist is recommending Remicade. He said this is my last resort, if this doesn't go well then, i might go for the surgery. As such, my colon is not bad but it is very severe almost at the end(may be 5-6 inches from the rectum). I am scared of going to Remiacde because of its side effects. I am scarred to death of these two options.
I literally stopped going out of my house except for work. This disease not only take away your physical health, it will also impact your mental capabilities. To add to it, there are several layoff's in my company and it's putting lot of stress on me. I can't imagine myself with out a job(insurance) with this disease.
Sorry to write so long, I am frustrated and not sure what I am doing wrong..
I am new to this forum but not new to the Ulcerative Colitis. I am 33 years old and I was diagnosed with Ulcerative colitis in 2007. I am from South-east Asia(moved to US 10 years back), so I was new to this disease, in-fact i haven't heard about this disease before. My GI specialist, compared this disease with BP/Diabetes to explain it to me about this disease and it's impact on my life. Finally, I could conclude from the conversation that it is going to stick with me for life long. Initially, I was treated with Predisone, Canasa and Colazal. I have responded well and within a 2 months the disease was in control. I was in remission for 2 years and again in 2009, I had flareup's. This time predisone did not go well with me. I had lot of acne all over my body and face. I stopped the medication but continued to use Canasa and Apriso(Instead of colazal). I was in remission for 2 more years. Again, I got the flareup's last year. This was very long flareup. Finally, my GI specialist has suggested Purinethol 6MP last month. I took this tablet for 7days along with canasa and apriso, the side effects are horrible. I lost my Hair, it was very emotional to me. I stopped the medication in 7 days. With in 4-5 days, I lost complete hair(Finally, I have to shave my hair), I had black spots on my tongue, and severe acne on my face/body. Strangely, i have black spots on my palm. Even though, my wife is very supportive but i could see the scariness in her eyes. My wife thinks, I have cancer and I am hiding that from her.
This medication has changed my life completely. I lost my weight 15 pounds in 7-10 days. It's been 4 weeks since I shaved my head, even now, my hair is not growing uniformly, there are some some spots its not even growing. I dont know if I will ever get my hair back. I have gone through the side effects for purinethol and they dont have all these side effects on their website.
Now, my GI specialist is recommending Remicade. He said this is my last resort, if this doesn't go well then, i might go for the surgery. As such, my colon is not bad but it is very severe almost at the end(may be 5-6 inches from the rectum). I am scared of going to Remiacde because of its side effects. I am scarred to death of these two options.
I literally stopped going out of my house except for work. This disease not only take away your physical health, it will also impact your mental capabilities. To add to it, there are several layoff's in my company and it's putting lot of stress on me. I can't imagine myself with out a job(insurance) with this disease.
Sorry to write so long, I am frustrated and not sure what I am doing wrong..
