I am really surprised that I am actually posting on here. I often read peoples posts, which I have found very helpful, but never thought I would say anything myself....for whatever reason, I felt compelled to to share my story and I would love feedback from anyone because I'm very confused.
I am 28 years old and was first diagnosed with Crohn's disease about 3 years ago. My symptoms started about 4-5 years ago and the diagnosis took forever and included multiple CT Scans, MRIs and even what turned out to be a completely unnecessary appendectomy. After my diagnosis, I really wasn't very upset, I was actually happy to have an answer and was relieved it wasn't something like cancer. However, it has been 3 years and I am really at the end of my rope with all of this stuff. I have been on various medications including Pentasa (which give me terrible side effects), Entocort and 40 mg of Prednisone for a year which caused me to gain 25 lbs. I have since been taken off the Predisone and am finally back to my normal weight after 9 months of dieting and working out like crazy. I was put on 6-mp (went form 75-100mg) about 2 years ago which I thought was helping somewhat (I don't know that I've ever been in remission) I still had pain, but not much diarrhea or blood. I recently had 2 flares and it appears the 6 mp is also not working. I am currently having some diaherrea (twice witt blood), bloating, slight abdominal pain and joint pain.....sorry to be so graphic. They want to put me on Remicade. I am definitely not comfortable taking Remicade or any other anti-TNFs after doing my research and seeing the increased risk for hepatosplenic t-cell lymphoma (HSTCL). I actually am not even comfortable being on 6-MP now that I know it also slightly increases your risk for HSTCL even when taken alone.
I don't know what to do. I don't want to take any of these medicines and I'm worried I've already put myself at risk by taking 6MP at all. To top it all off I really want to have a baby. My husband and I have wanted to for a very long time but I can't seem to get myself healthy enough to be able to get permission from my doctors to try to conceive. I really don't want to miss out on having kids due to this disease, and I feel so guilty that I am keeping my husband from having kids. I am just getting to a point where I feel like I'm never going to have a life again. I used to be very social and go out with my friends but I feel like I am so different from them now. They are all having children and getting out an enjoying life. I am so tired a lot of the time and am probably not that fun to be around because I am so down about this illness. I don't like to talk to people about my illness because it's embarrassing. My husband is amazingly supportive, I am so lucky to have him, but I know I am bringing him down too.
Anyway, I am sorry for writing so much, I'm sure I sound very dramatic. I am so confused and I have no idea what to do. Any feedback about other possible medicines (or medical alternatives) or other peoples experiences, or really any hope at all would be appreciated. Thanks.
I am 28 years old and was first diagnosed with Crohn's disease about 3 years ago. My symptoms started about 4-5 years ago and the diagnosis took forever and included multiple CT Scans, MRIs and even what turned out to be a completely unnecessary appendectomy. After my diagnosis, I really wasn't very upset, I was actually happy to have an answer and was relieved it wasn't something like cancer. However, it has been 3 years and I am really at the end of my rope with all of this stuff. I have been on various medications including Pentasa (which give me terrible side effects), Entocort and 40 mg of Prednisone for a year which caused me to gain 25 lbs. I have since been taken off the Predisone and am finally back to my normal weight after 9 months of dieting and working out like crazy. I was put on 6-mp (went form 75-100mg) about 2 years ago which I thought was helping somewhat (I don't know that I've ever been in remission) I still had pain, but not much diarrhea or blood. I recently had 2 flares and it appears the 6 mp is also not working. I am currently having some diaherrea (twice witt blood), bloating, slight abdominal pain and joint pain.....sorry to be so graphic. They want to put me on Remicade. I am definitely not comfortable taking Remicade or any other anti-TNFs after doing my research and seeing the increased risk for hepatosplenic t-cell lymphoma (HSTCL). I actually am not even comfortable being on 6-MP now that I know it also slightly increases your risk for HSTCL even when taken alone.
I don't know what to do. I don't want to take any of these medicines and I'm worried I've already put myself at risk by taking 6MP at all. To top it all off I really want to have a baby. My husband and I have wanted to for a very long time but I can't seem to get myself healthy enough to be able to get permission from my doctors to try to conceive. I really don't want to miss out on having kids due to this disease, and I feel so guilty that I am keeping my husband from having kids. I am just getting to a point where I feel like I'm never going to have a life again. I used to be very social and go out with my friends but I feel like I am so different from them now. They are all having children and getting out an enjoying life. I am so tired a lot of the time and am probably not that fun to be around because I am so down about this illness. I don't like to talk to people about my illness because it's embarrassing. My husband is amazingly supportive, I am so lucky to have him, but I know I am bringing him down too.
Anyway, I am sorry for writing so much, I'm sure I sound very dramatic. I am so confused and I have no idea what to do. Any feedback about other possible medicines (or medical alternatives) or other peoples experiences, or really any hope at all would be appreciated. Thanks.
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