There had been signs for years. My buddies always thought I was hungry, as my stomach growled so often and so loudly. On camping trips the guys in the next tent would comment on the noises coming from my tent. Then there was that mysterious illness that kept me out of school for a couple of weeks when I was about thirteen. The small town doc in Jamestown, North Dakota in the early sixties wasn’t able to give us a good diagnosis.
My first ten years at my new job in Rochester were medically normal. Then minor trouble, diarrhea the morning after an evening meal of popcorn. That was a problem, as I was playing a lot of league racquetball in those days, which often meant missing the regular dinner. A huge bowl of popcorn was a perfect substitute for a balanced diet. It was just the morning after that was an issue.
Other foods began causing trouble, too. Then one night we had ribs for dinner. Wonderful, greasy ribs. They were great! Until the next morning. Oh, my, maybe it wasn’t the popcorn, it was all the butter I put on the popcorn? It must have been a big deal, because this thirty-something man went to the doctor to talk about a pooping problem.
He sent me to several humbling tests and eliminated a lot of easily treated problems. He finally got to the point where he suspected Crohn’s disease. I had no idea. Confirmation of the diagnosis would come from a barium follow through X-ray. This is where I discovered the serendipitous benefit of living in Rochester, Minnesota with the Mayo Clinic.
A barium follow through X-ray is a multi-hour ordeal. Drink this, sit and wait. Take a picture. Drink more slime. Sit a little longer. One more glass of awful glop. Repeat until done. There was a whole crowd of us on the third floor X-ray department that day. One of them was a guy about my age. He was from a small town in western North Dakota. He had doctored for six months, and was finally at Mayo getting the same procedure as me, with the same probable diagnosis.
I had been doctoring for a week.
Confirmation of the diagnosis was a life changing event for us. It started our tradition of going out for coffee to discuss things. We sat in the coffee shop across the street from the clinic for a long time, talking about how things would change, and how the disease would effect our lives. In the 1980’s Crohn’s was not a terminal illness, but it was barely treatable. As we talked and watched other people come and go from the coffee shop, we realized that we were the lucky ones. The disease was uncomfortable and unending, but it wouldn’t end my life soon.
But it did change everything. I decided to focus more on family and less on work. I became much more observant of the goodness in the life around me. Learning about this disease became a priority, and that encouraged my learning tendencies in general.
Treatment was spotty at best in the eighties. Most drugs were marginally effective. Those that worked, like prednisone, had deadly side effects. I got to know the medical team very well. There were the half-dozen abdominal surgeries for obstructions and complications. There were another dozen experimental and new drugs that didn’t work for me.
That all sounds quit dreadful, doesn’t it? Early on I discovered what was then called the NFIC, which eventually became the Crohn’s and Colitis Foundation of America, the CCFA. Through them, and the support group we started in Rochester, I’ve met many dozens of wonderful people, patients, caregivers, educators, and those who care.
The support group gave me a unique view of fellow Crohn’s patients. Most had it easy, one treatment with prednisone and they were free of symptoms for years. Some had a little more trouble and had a surgery to resolve an issue. Very few had all the surgeries and drug failures I did. It was a badge of honor for me to claim the most surgeries! As someone who had tried every drug, often before it received FDA approval, I felt able to help others work through the difficult drug choices. People from all over the country came through our support group, including one older gentleman who had actually consulted with Dr. Crohn!
Understanding and treatment of Crohn’s disease has come a long way since my diagnosis. Today there are multiple treatments, enough that there’s a debate in the medical community about exactly which treatments and combinations of treatments are best. One of those treatments seems to work for me. I’ve been on biologics for ten years, successfully!
Forgive me for repeating, but the CCFA has been a wonderful adjunct to my journey with Crohn’s. They have sponsored research that yielded new drugs and treatments, hosted many education conferences, published many informational brochures, given me excellent training in leading a support group, and they have introduced me to countless wonderful people. It would be possible to go through this journey without the CCFA, but I don’t want to imagine doing it without them.
Considering the above, everything I’ve been through, and all that my family has gone through, the diagnosis of Crohn’s disease has been an overall positive for my life. I’ve learned about medicine, met many wonderful people and much more. Most importantly, I’ve realized that while my burdens are tough, they’re easy compared to what so many others have to bear. IBD shaped my life in a positive way, and has allowed me to take advantage of so many opportunities to help other people.