A Case for Specialty Clinics for Crohn's Disease

When I was first diagnosed with Crohn's disease, I didn't know where to turn. It was before the Internet existed (yes, I'm old; I have trouble remembering life before the Internet), and it Crohn's isn't the kind of illness that you want to discuss with just anyone. I didn't feel I knew my doctor at the time; he was a stranger and I wasn't going to be in Kansas for very long, so I was uncomfortable asking him too much. I couldn't find a specialist, and I couldn't find a support group.

Eventually I learned that there was a national organization, the Crohn's and Colitis Foundation of American, and with a phone call they sent me some literature. They also provided a list of support groups around the country. Now you can go to their website at www.ccfa.org and learn all kinds of things about Crohn's disease and ulcerative colitis (UC). You may even learn more than your doctor knows.

I've lived in a few different areas since I was diagnosed, and the one thing I've found is that very few doctors understand Crohn's disease well. It's increasingly common, but not so common that it has become a sub-specialty in medicine. It's still managed by gastroenterologists. Some of them know more than others, and I've been fortunate here in Bismarck to have a doctor who really does know his stuff. But I lived in a much larger city for several years, and found no one who really "got" the illness.

I would like to see two things for people with Crohn's disease. First, I'd like to see specialized clinics in our largest cities that treat only inflammatory bowel diseases (IBDs, basically Crohn's and ulcerative colitis). Gastroenterologists could come from any part of the country and do a three- or six-month training in one of these clinics, then go back to where they came from better equipped to help their Crohn's and UC patients. They'd have places they could call for phone consultations, and places to send their patients who need more help than smaller clinics and hospitals can provide.

Second, I'd like to see that a part of these clinics included clinical social workers and counselors. They could learn the specific problems that Crohn's and UC patients have, and the difficulties that they deal with every day. It would help the patients because they could have someone to support them emotionally and help them to reduce their stress levels, which in turn could help reduce the impact of their illness to some degree. It would help the counselors because it would give them a new area of knowledge. Like gastroenterologists, clinical social workers and counselors could come from anywhere in the country and do a training period, rather like an intern does a rotation in a specialty, and learn first-hand what some of their clients are dealing with in an intensive course, then return home and apply their new knowledge.

Having doctors and counselors who'd done intensive work and training with IBD patients would be a real blessing for many Crohn's and UC patients, whose gastroenterologists are, and have to be, generalists, because of the overall numbers of patients and doctors in their geographic areas. Having someone to talk to therapeutically that I feel truly understands what I deal with - that's something hard to imagine. But I'd love to have it.