What is Crohns?

Hey there!  I thought I would take a minute to talk about my disease - Crohn's - and my involvement with the CCFA.  I get questions all the time about what Crohn's is, when I was diagnosed and how it impacts me.  So let's start from the beginning.

I have had gut problems ever since I had the capacity to remember, and even before that (I'm told).  I have early memories being curled up in the fetal position because it was the only way I could handle the pain.  I remember being out for dinner with my family and not being able to eat because I was in too much pain.  We could never figure out why I would get such bad "stomach aches".  I would try taking Tums, or other antacids, and nothing seemed to work.  As I grew older - with the help of my mother - we were able to uncover some trigger foods that improved my quality of life.  So I began to avoid things like soda pop, popcorn, milk, ice cream, and gum.  Keeping these things out of my belly helped me manage my pain.

Knowing what foods to avoid was only part of it because there were still times that I felt bloated and sluggish.  It always seemed so unfair that my belly protruded due to my sickness (as a teenager this is a big deal).  I often felt totally drained no matter how much sleep I got, and being an active young lady, this made playing the sports I loved challenging at times.

By the time I reached college, my gut problems were just life.  I didn't know anything different.  I experienced diarrhea frequently and continued to rely on watching what I ate as a source of comfort.  It was always a difficult thing to explain when people didn't understand why I couldn't eat or drink certain things. And the list of foods and drinks on the AVOID list continued to grow.  It was also embarrassing when I was gassy or bloated.  But again, it just began to be my normal so I lived that way without much notice.

After graduation I got a desk job and began a more sedentary life style with more stress. I think these were the triggers to finally lead to my Crohn's diagnosis.  It started out as a unexplainable swollen ankle.  It was swollen for a week or so and only got bigger and red spots of swelling began to spread across both my legs.  It became painful, and I could hardly walk without being in excruciating pain.

I didn't understand what it was from, so I went to the clinic to get it looked at.  They didn't know exactly what it was either.  I got a biopsy and was asked a series of questions.  She said it could be related to my GI tract.  Suddenly I had realized that I had been living with diarrhea for the past few months.  To my surprise, that was NOT normal.  I proceeded to get a series of tests - a colonoscopy and CT scan for sure.  It was quickly determined after I got the results that I had a disease.  Crohn's disease.  I can remember the look on my parents faces when they heard the news.  It was a big diagnosis, but also came as a relief to me to finally understand my body a little better.  I was immediately put on steroids to reduce the inflammation in my body.  That was my miracle drug for a while, but it comes with intense side affects.   As I tapered off the steroids I was put on Azathioprine (or Imuran).  This is a drug given to transplant patients.  It seems to work by stopping your body from attacking itself - which is what an autoimmune disease like Crohn's does. 

It was hard to accept the reality of being medicine dependent at age 23, but I knew I needed something.  Luckily my body responded well to this medication. I remain on the same drug and dosage today which after 9 years, is a really fortunate situation.  Many patients experience their disease progressively get worse meaning stronger and stronger medications, and larger doses.  The thought of reaching the top of the drug ladder sounds so scary.

Over the course of the last 9 years I have managed my Crohn's with diet, exercise, acupuncture, and stress management.  I am getting pretty good at it.  Yet, I still do have episodes.  Three years ago I had Iritis (inflammation of the iris) and needed steroid drops.  I also have days where I just need to slow down and sleep.  I still have to explain to people why I can't drink beer, eat salads, and soups, etc.

Since I moved to Seattle I have been a part of the CCFA (Crohn's & Colitis Foundation) community.  I have been able to interact with others who have similar problems and discomforts.  It really helps to keep things in perspective and remain positive.  I consistently feel lucky that my disease is not worse and that I am able to manage it pretty well with diet, exercise, medication, and acupuncture.  About 2/3 of Crohn's patients will have surgery to remove part of their intestine at some point in there life, and my hope is I never reach that time.  Hopefully, before that happens, they will find a cure for this disease.

For the past 4 years I have been volunteering for the CCFA and help organize and put on the Take Steps walk.  It is so much fun and a small way that I can give back to the community that has given me so much.  Last Sunday was the SEVENTH Take Steps walk event that I attended with my family by my side. Ben has been to every walk with me and is my constant support.    Here we are at the walk - it was a HOT, sunny day!

 

As I grow with this disease I find myself being somewhat of the spokesperson for Crohn's.  Several people in my life have been diagnosed since first found out.  I am so lucky to hear their stories and can understand their struggle.  It also allows me to share my story and the learnings I have uncovered over the last several years.   So when I was asked if I could tell my story (or at least a little bit of it) for the radio to help spread the word about this disease I quickly accepted.  I attached the recording below.  My part is towards the end.

So this is me.  The disease feels like me because I think about it everyday, multiple times a day.  It has become a part of my identity for better or worse.  I like to think for better.  It helps be consider my body each day and it helps me think about what I am putting in my mouth.  It gets me out there running on rainy days because I know I will feel better afterwords.  It helps me be a better mother because it reminds me to slow down when necessary.  It's certainly not ideal, but I know it could be so much worse.  I am so lucky to have a strong support system and understanding friends and family.

Thanks for taking the time to read about me and Crohn's. It was a LONG one.   It's because of people like you that I feel so strong and supported!