Sandra's IBD Story

It has been over half... over half of my life I have been diagnosed with Crohn's Disease. I was 16 and taking life guarding courses when something was wrong. I had come off a great summer and fall where I had brought my 3km cross country running down to under 15min. I was planning on completing my black belt in Karate before the end of my senior year and then off to university and then to the Air Force. But much of that changed. I started to get killer cramps and diarrhea. These cramps would be like running full on into the corner of a table, then taking that initial can't breath, knock you on your knees pain and stretching it out (without pause) for hours. After 3 months of this, many pounds lighter and my mom hassling the doctors, we finally had a diagnosis. Then started the medications. I have been on most things going for Crohn's but have found that prednisone, flagyl and Imuran are still the best for me.

I had to give up the running and the Air Force doesn't take IBDers. I didn't get my black belt. However the karate training and the incredible understanding of my trainer has made me a stronger person. I have always been very open about my disease and have found many great people who are willing to make the exceptions I need to get on with life. Whether that be extra bathroom breaks or a moments rest before I can continue. After finishing high school I was off to University. I had a small flare in the first year, which was controlled with medication. I finished my Bachelor's of Science Honors in 4 years, had made many friends and great experiences...but years of prednisone use was starting to catch up. I now add osteoporosis to my medical chart. I started medication for that at the beginning of my first year as a grad student. I managed along with minor flares and medication till after I finished my Masters Degree in Molecular Biology. Half a year later I was in major pain and being bounced around doctors to find the cause. My back and left hip where painful and limiting in motion. I was tossing back ridiculous amounts of pain medications. After three weeks of this, no sleep and constant pain, we had a answer, an abscess. The Crohn's had created a fistula to a muscle in my back which was pushing against a nerve for my leg. They placed a drain and after taking 500ml out, things were much better. Ironically the day they finally figured out what was wrong I was to start a new job, and here I was in the hospital. My new employers (truly an exceptional situation) took me anyhow!!! After 6 weeks with the drain I went for my first surgery (9yrs after the first diagnosis). They removed all of the descending colon and a good portion of the transverse colon. This situation, while 'fixing' the current problem, highlighted something I will have to deal with. The Crohn's was affecting my rectum heavily and I would have to have a colostomy in the future.

So after all that I finished up my contract with my very understanding employers and started to look for something new.....this took me to Germany where I worked for 5 years before moving to Sweden this for a great job. Starting new in a new country with new doctors and not knowing the language was and is an amazing challenge. I managed it, amazingly enough. While in Germany I received Remicade but suffered severe infections from this.

Of course while I have been here in Europe I have traveled. I have used bathrooms all over the place (I can say I have pooped in almost every country of the EU), some more interesting than others, some more disgusting, some in the most bazaar locations. I have somehow even managed Oktoberfest, although getting home with dry pants has not always been the case.

So now I have started in a new country with a new language, new job and new friends. I am still very open about my illness (especially as I have dietary restrictions because of the disease). I believe that being open allows others understand what it is like to live with this disease. I try to do all the things that I want but there are limits. I need my sleep and I can't go out and party without paying for the fun, for days afterward. I have to be a bit more careful with ordering new things at restaurants.

Because of the Osteoperosis I can't pick up a backpack and go for a number of days, I can not carry heavy things without back pain. I also am limited on contact sports due to the risk of breaking bones. But I go then instead for canoe and bike trips, where I don't carry the pack.

This past year the damage caused by the disease to my rectum finally caught up with me. I went though the operation to create a permanent ostomy. While this has forever changed how my body looks it has improved my life so far, unfortunately it does NOT cure my Crohn's disease. The ostomy comes with its own set of troubles. I will have to forever wear a bag on my side; therefore, I must always have a supply of the bags with me and when I travel, extras and the worries at increased security points. Between the stool and the bag I have to also be very careful of the skin in the area of my bag. It can become infected and damaged easily and take a long and painful time to heal.

I try to have a good outlook on life, and I have a great collection of supportive friends and my family to help me out when the going gets rough.

Updated 6/28/2006

Return From Sandra's Story To Home