• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Interesting path to diagnosis

Hi all you wonderfully supportive people. I was diagnosed with Crohn's last year (at age 44 - how's THAT for denial), and the journey was sort of interesting so I wanted to briefly share how I got there. My family has a significant history of cancer, particularly breast, so my GYN wanted me to get breast MRI in addition to mammograms. Insurance wouldn't cover it until I had genetic screening. During the screening, it came out that my sister had had colon cancer, so they strongly recommended I have a colonoscopy. While I'd had some colon symptoms for many years, I'd recently started having lots of pain with BMs so I agreed, and they diagnosed me with Crohn's after the scope.

When I was younger and had symptoms, I was just told "you have your father's bowels" and to put up with it. I thought it was somewhere in the range of "normal". So many things began to make sense after my diagnosis. I wonder how many people suffer in silence instead of seeking help (until forced to). Anyway, I didn't respond to Lialda, or to just Entocort. I tried Humira, but after two months, had an allergic reaction. I'm now on Cimzia two shots every two weeks and Entocort. Still having a lot of pain, but we just increased the frequency of the Cimzia so we'll see if that helps.

This is a very isolating disease. Having read a lot of the posts, I just want to thank you all for the wonderful support you provide here. You people are superstars!
 

nogutsnoglory

Moderator
Welcome to our online community. I truly hope the double dose of Cimzia works for you. I know a few people have done it and I was considering it as well when on the drug but my doctors wanted me on Remicade. Please keep us posted.
 
My family has a significant history of cancer, particularly breast, so my GYN wanted me to get breast MRI in addition to mammograms. Insurance wouldn't cover it until I had genetic screening. During the screening, it came out that my sister had had colon cancer, so they strongly recommended I have a colonoscopy. While I'd had some colon symptoms for many years, I'd recently started having lots of pain with BMs so I agreed, and they diagnosed me with Crohn's after the scope.

When I was younger and had symptoms, I was just told "you have your father's bowels" and to put up with it. I thought it was somewhere in the range of "normal". So many things began to make sense after my diagnosis. I wonder how many people suffer in silence instead of seeking help (until forced to). Anyway, I didn't respond to Lialda, or to just Entocort. I tried Humira, but after two months, had an allergic reaction. I'm now on Cimzia two shots every two weeks and Entocort. Still having a lot of pain, but we just increased the frequency of the Cimzia so we'll see if that helps.
I'm a little surprised they put you on Humira at all, since it has a potential of causing cancer. I had heard they don't usually do that with people who have cancer in their genetic line.

I'm happy to hear you have a diagnosis and can treat. Hopefully the Cimzia starts working soon and you feel better, it does seem like for a lot of people a little time is what does the trick once the meds are started.
 
Top