• 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.

Veteran Crohns Patient

This could be a long story... so I'll share the highlights...

I was diagnosed with Crohns when I was 5 years old. I am 29 now. My disease was always very active and severe. At my diagnosis I had disease from my mouth all the way through my intestinal track and into my anus. Over time my disease was brought under control and remained in my colon and anus.

I spent most of my childhood on high doses of prednisone, and combinations of zantac, flagyl, and I'm not sure what all. Somewhere along the line Remicade was introduced and I was among the first to try it. It worked miracles for me! I had felt the best I had ever felt in my life. Over time, the Remicade became less effective and my disease marched on.

I began experiencing peri-anal disease and had several fistulas coming into my bottom and severe stricturing of my anus. I was doing home dilitations to keep my opening open enough to pass stool. It wasn't too long at this point that I perforated my colon and had my first surgery and colon resectioning in 1999.

I was 15 and a sophmore in H.S. Coming back to school after that surgery and with a colostomy was a life changing experience. This surgery maintained my health, however, through most of my college and in 2004 I had a second surgery where they took my entire colon and rectum, leaving me with a permanent colostomy at age 20.

In 2006 I started Humira after maintaining my disease with 6mp and prednisone. Humira was good to me! I experienced remission and was symptom free until 2011.

In 2011 I caught valley fever and it sent my whole system into a tizzy! I have spent the last two years trying to get back on my feet. The valley fever has been under control for a while now, but my disease is running a muck.

It has been difficult dealing with this flare after spending so many years symptom free! The pain has been terrible, the loss of concentration and the lack of desire to do most activities that I find enjoyable is difficult. It is hard to maintain friendships as I never know from one day to the next how I am going to feel to make plans, etc... The quality life has been terrible, over all...

In October 2012 I started Cimzia, and after 6 months of little improvement, I am now double dosing the Cimzia. It seems to be working finally. My GI has talked about methotrexate or 6mp to help it out.

Today I have been dealing with a peristomal fistula that has erupted on my belly. I started antibiotics this afternoon and will wait through the weekend to follow up for the next steps, as I don't have a fever and feel much relief since it has pussed. I am actually hoping that this may be among the final layers of issues that need to be dealt with to really begin the road to recovery...

Some things I have learned over the years...

Stress is a huge trigger of my symptoms
Yoga improves my symptoms
Diet has been huge for my disease control
Enjoy the good days because you never know when you're going to get another one
As much as I would love to never take another pill/injection I am thankful for modern medicine
 
Top