Hi all,
This is my first post! I was diagnosed with Crohn's in July of this year. My daughter was born September 2012, and I had diarrhea and bloating/cramping most of my pregnancy but my OB/GYN said it was probably just related to being pregnant. After she was born, my symptoms disappeared BUT I had fissures that would not heal! Assuming they were just from childbirth I gave it time. But after a few months my OB referred me to a colorectal surgeon. After some steroid creams and treatments he was starting to get very perplexed as to why I wasn't healing. The diarrhea didn't start back up again until about April 2013 and wasn't even that bad... more annoying than anything! End of May, my colorectal surgeon suggested I get a colonoscopy done by GI to make sure I didn't have Crohn's. I seriously barely knew what it was at that point. I remember I Googled it in the parking lot after my doc visit Convinced myself I didn't have it... didn't have fever, weight loss, loss of appetite, severe pain, etc... none of that. But my GI wanted to do a colonoscopy anyway before letting the colorectal surgeon do surgery to fix the fissures. Had colonoscopy July 5th and yep... diagnosed w/Crohn's!! He said I was pretty inflamed and was surprised I was feeling as well as I was. He started me on Entocort but I actually got worse. Started getting cramping on the right side, diarrhea was increasing (but still bearable). My GI rated my Crohn's a 3-4 on a scale of 1-10. Since the Entocort wasn't working, he suggested Remicade. Mostly because the Remicade would be the best thing to treat my fissures. Oh and I should mention I was also diagnosed with Celiac's on top of this. The diet change has sucked, but at least I don't have to take meds for Celiac's. My GI doc says I am his only patient with both and it's pretty rare that I have both.
I had my first infusion on August 30th. I've had the 3 loading doses, and actually responded almost immediately (within 2 days of first dose). I felt great, back to how I felt before. One BM a day, (formed), no cramping, and fissures no longer hurt and I could tell they were healing. I am now in the first 8 week span... and I can tell my symptoms are returning They bumped up my infusion 1 week so that I am waiting 7 weeks instead of 8. Anybody else have these breakthrough symptoms? My Remicade nurse said it was common especially for the first 8 week span since my colon is not healed yet.
I have had anxiety most of my life anyway, and as you can imagine it about quadrupled after all of this along w/depression. I had to start seeing a therapist but am currently not taking anything for anxiety because I want to learn how to manage it on my own. I am scared for the long-term expectations. I wonder what my life will be like now, and I wish I could just be healthy for my daughter as I was before (or THOUGHT I was). My GI doc says the fact that I responded so quickly to the Remicade is a good indicator that it will work for me long term. I am just scared of the fissures coming back and Remicade wearing off eventually... then what? Ugh.
Good news is, I have a wonderful husband and good support system of family and close friends.
Thanks all for reading! I'm glad I found this forum.
This is my first post! I was diagnosed with Crohn's in July of this year. My daughter was born September 2012, and I had diarrhea and bloating/cramping most of my pregnancy but my OB/GYN said it was probably just related to being pregnant. After she was born, my symptoms disappeared BUT I had fissures that would not heal! Assuming they were just from childbirth I gave it time. But after a few months my OB referred me to a colorectal surgeon. After some steroid creams and treatments he was starting to get very perplexed as to why I wasn't healing. The diarrhea didn't start back up again until about April 2013 and wasn't even that bad... more annoying than anything! End of May, my colorectal surgeon suggested I get a colonoscopy done by GI to make sure I didn't have Crohn's. I seriously barely knew what it was at that point. I remember I Googled it in the parking lot after my doc visit Convinced myself I didn't have it... didn't have fever, weight loss, loss of appetite, severe pain, etc... none of that. But my GI wanted to do a colonoscopy anyway before letting the colorectal surgeon do surgery to fix the fissures. Had colonoscopy July 5th and yep... diagnosed w/Crohn's!! He said I was pretty inflamed and was surprised I was feeling as well as I was. He started me on Entocort but I actually got worse. Started getting cramping on the right side, diarrhea was increasing (but still bearable). My GI rated my Crohn's a 3-4 on a scale of 1-10. Since the Entocort wasn't working, he suggested Remicade. Mostly because the Remicade would be the best thing to treat my fissures. Oh and I should mention I was also diagnosed with Celiac's on top of this. The diet change has sucked, but at least I don't have to take meds for Celiac's. My GI doc says I am his only patient with both and it's pretty rare that I have both.
I had my first infusion on August 30th. I've had the 3 loading doses, and actually responded almost immediately (within 2 days of first dose). I felt great, back to how I felt before. One BM a day, (formed), no cramping, and fissures no longer hurt and I could tell they were healing. I am now in the first 8 week span... and I can tell my symptoms are returning They bumped up my infusion 1 week so that I am waiting 7 weeks instead of 8. Anybody else have these breakthrough symptoms? My Remicade nurse said it was common especially for the first 8 week span since my colon is not healed yet.
I have had anxiety most of my life anyway, and as you can imagine it about quadrupled after all of this along w/depression. I had to start seeing a therapist but am currently not taking anything for anxiety because I want to learn how to manage it on my own. I am scared for the long-term expectations. I wonder what my life will be like now, and I wish I could just be healthy for my daughter as I was before (or THOUGHT I was). My GI doc says the fact that I responded so quickly to the Remicade is a good indicator that it will work for me long term. I am just scared of the fissures coming back and Remicade wearing off eventually... then what? Ugh.
Good news is, I have a wonderful husband and good support system of family and close friends.
Thanks all for reading! I'm glad I found this forum.