Hitting the Ground Running

August 22, 2009 at 5:19 am (Uncategorized)

So this 1/2 marathon is no joke, I’m totally serious about running this thing. I know it’s going to be challenging, but I feel it’s something I have to do; not just for myself, but for so many others. The run is a fundraisng/awareness event for the Crohn’s & Colitis Foundation of America, and for those of you who don’t know, I have Crohn’s disease. The money raised for this event will be used for research of new medications and the disease itself.

So, here is my story, I know it’s a bit long, but please keep reading. In December of 2005 I was diagnosed with Crohn’s disease, although I knew this meant I would be dealing with chronic illness my entire life, I was relieved to know that my symptoms actually had a name. I started treatment the same day as being diagnosed, I was put on the highest prescribable amount of cortical steroids, and had instant results. Things weren’t so bad the first few weeks on steroids, I felt better, my energy was up, and soon enough I feeling great. As I tapered down the steroids the symptoms came back, I also became really irritable, and noticed my body changing as a result of the steroids. One group of steroids stopped working, so I was put on a different group, then they stopped working, and the symptoms persisted. As my body shrank my face grew fatter, it was a very odd look, but it meant the steroids weren’t working. I was finally put on immunosuppressants to try and get my immune system to stop attacking my GI tract as if it were a foreign body. It worked…for a while, I got a head cold which almost turned into pneumonia, so I needed my immune system back. I was put back on the steroids, experimented with new ones, went back to high doses of old ones. I knew things weren’t working and my Crohn’s was spinning out of control, I was missing a lot of work, sleeping all through the weekends, eating less than 1000 calories a day so my stomach wouldn’t cramp up.

In November 2007 I was hospitalized, I thought it was only going to be a few days most; get some IV fluids and meds in me and away I go. I knew that wouldn’t be the case after I got the results from my first CTscan, my intestines had ulcers and abscesses, surgery looked like it was in my near future. However, surgery had to wait, my immune system was shot from all the meds I was on for the past 2 years. I was so anemic I needed a blood transfusion, I was so malnourished I needed TPN (total parenteral nutrition) and lipids administered through the IV, I also only weighed 99 pounds. I spent a few days at one hospital while my doctors decided what to do with me, finally the transferred me to a newer hospital that had teams who specialized in Crohn’s cases. This transfer probably saved my life. I was set up with a new team of doctors, put on new antibiotics, and had the sweetest room in the hospital.  I spent 6 weeks here, waiting for the next step, having CTscans and other noninvasive procedures done. People think I should have gone crazy, being trapped like a lab rat, not knowing what’s going to happen tomorrow. It wasn’t so bad, I had my family, I had amazing friends who would come and visit or call me daily, my doctors we great, as were the nurses, I also had a great view of the Golden Gate Bridge and the bay. I would spend my days walking the halls with my “dance partner”, which was actually my IV pole, talking with the nurses, watching the fog come in through the Golden Gate, and sipping on apple juice flavored contrast fluid for my CTscans. Apparently that apple juice concoction tasted pretty nasty, but to me it tasted great since that was the only thing I could have. My CTscans started to look normal, and then they looked great, and my blood levels looked great. It seemed I had dodged major surgery. I was released a day before Christmas Eve, it was great spending time with my family out of the hospital. I was so happy, and so was everyone I knew, I was so excited to be out and about again. 

Two days after Christmas I woke up sweating, I had a fever of 103, was delirious and felt like the Incredible Hulk had punched me in the gut. My mom rushed me to the doctors, again I was hospitalized and put in the ICU. I was rushed in to have a CTscan, my small intestine had completely ruptured and toxins were entering my body. I was septic, and was given a central line in my neck, giving the doctors a clear path into my heart. My blood pressure was extremely low and my pulse was racing at 150. I was being prepared for surgery and given a platelet transfusion, but they couldn’t operate until my pulse and fever came down. I was packed in ice and given an extremely low dose of childrens’ Tylenol. After 6 hours of this I was finallyable to go in for surgery. I was so happy that I was joking with the OR team about listening that radio station they had on. After the surgery I woke up, doped up, asking about what the doctor took out. I had to have a foot and a half of my small intestine removed and about 6 inches of my large, I ended up with an iliostomy. An iliostomy to most other 24 years olds would probably mean the end of the world, but it meant freedom to me. The diseased area was gone, I was finally going to get better and return to my life.  My doctor told me that within 6 to 9 months I would be looking at another surgery, but it would be to reattach my intestines…a good surgery so to speak. I was still on antibiotics, which slowed healing, but after 7 months I was healthy enough for my second surgery. In July 2008 I was pieced back together, I felt normal, despite having a 10 inch incision on my stomach.

It’s been over a year since my successful reattachment, during my recovery my doctor suggested I should get more exercise. I started with simple walk around the block, then started walking a mile, and I kept increasing the distance. While on the CCFA website I found out they sponsor runs around the US. I started thinking that it would be great to be able to complete one of these runs. 

So, here I am training for a 1/2 marathon, I’m not doing it alone, the CCFAhas set up training groups and coaches.  Right now in my training I’m moving on average 4 mph, so I’ll complete the half in a little more than 3 hours, not bad. In 16 weeks, after my training is complete, I should be able to complete the run in under 2 hours. Now, I don’t want to sound selfish in my reasons, I am running this for me, but I’m raising money to help those like myself who have suffered from Crohn’s disease.  So that’s my story, it sounds unique, but unfortunately it isn’t. So many Americans are afflicted with Crohn’s, and many haven’t even been diagnosed yet because their doctors don’t know the signs. This run will help those who still need help.

Thanks for reading. I will start my fundraising campaign soon if any one would like to donate.

If you would like any more information on Crohn’s disease of the Rock’n’Roll 1/2 marathon go to http://ccfa.org  or http://www.ccteamchallenge.org/site6.aspx