Finding Crohn's Support in North Dakota

I live in Bismarck, North Dakota, the capitol city of North Dakota and one of the four largest cities in the state. I was diagnosed with Crohn's disease in 1983, when it was still an embarrassing secret that was not discussed in "polite company." Ten years ago, I moved back to my hometown of Bismarck from Nevada and found a Crohn's support group that met at Medcenter One, the largest of Bismarck's two hospitals, on the second Monday of each month at 6 p.m. It was a great relief for me to find and meet people with whom I could discuss my Crohn's condition without embarrassment and have presentations by numerous experts in the field of gastroenterology (the branch of medicine that treats inflammatory bowel disease (IBD) - Crohn's disease and ulcerative colitis; irritable bowel syndrome, though it has a few of the same symptoms, is not considered an IBD). I learned so much about managing Crohn's and discovered so much information that I needed to know - information that anyone with a disease needs to know. Although the Crohn's support group stopped meeting last spring, I have stayed in touch with many of the people I met there, and if we can gather enough support, we may be able to start the support group up again. It was this Crohn's support group that introduced me to the two doctors who may have saved my life last year.

On a national level, we (Crohn's patients) can receive online support from CCFA, the Crohn's and Colitis Foundation of America. North Dakota doesn't have its own chapter of CCFA; instead, we are lumped in with Minnesota, along with South Dakota and Wisconsin. There is a monthly meeting of the Minnesota CCFA chapter in Fargo, North Dakota, on the second Monday of each month, at MeritCare South (hospital) from 7 to 8:30 p.m. I have never made the 200 mile trip,each way, to attend that. CCFA's website keeps us informed of national and regional fund raising events and meeting, but most of them are much too far for people who actually have Crohn's disease to drive to (see my AC article on traveling with Crohn's). The best online source for support I've found, however, is a website called http://DailyStrength.org. They have support groups for many different illness, and provide information and some of the most uplifting personal stories and responses I've found.

I have two doctors who are my shining stars for Crohn's. My gastroenterologist is Dr. Yaser M. Rayyan, who practices at the Q&R Clinic, affiliated with Medcenter One. Dr. Rayyan came here from Jordan, and is one of the kindest doctors I've ever met. He also does a great job of explaining both my condition and my treatment options, and allows me to take an active role in my own health care. Taking an active role is a must for anyone with a chronic illness, regardless of its nature. You need to be your own specialist. My Colon and Rectal surgeon, whom I met late last year when I needed surgery, is Dr. Douglas Bergland, also of Q&R Clinic. He is one of the few surgeons in the state who specializes in Colon and Rectal surgery, and I consider myself very lucky that he is here.

The Endoscopy Center at Medcenter one is the best qualified places for Crohn's and UC patients in this region to go. An endoscopy is a procedure that allows doctors to make a diagnosis by looking inside the body, and in the case of Crohn's patients, throughout the digestive tract, using a tiny fiber optic scope. Although this type of procedure used to be done in an operating room, the Endoscopy Center has improved technology and has four patient rooms equipped with the latest equipment for the procedure. They also have available fluoroscopy capabilities, so that patients don't need to go to the X-ray department of the hospital. Medcenter one is the only location that offers this capability in a four-state region, and is also the only provider in the region with a colon and rectal surgeon (my own Dr. Bergland) on staff. Dr. Bergland removed a piece of my small intestine which had been inflamed, and over time became blocked. The blockage was initially discovered by Dr. Rayyan, doing an endoscopy of my intestinal tract.

There are not many providers of useful equipment for Crohn's and UC patients in the state. Here in Bismarck, the best place to shop is at MedEquip One, a part of the MedCenter Healthcare System. From them I've obtained doughnut pillows which allow me to spend more time in front of the computer, and a sitz bath that provides an often comforting soak, as well as products that I can add to the water to make it more soothing without risking making my intestines more inflamed. The only problem with the sitz bath is that my house is too small for it to have been installed on the main floor; it is in a corner in my basement, which means that at times when I am in intense pain, I go down the steps one at a time, on my rear, like a small child. Great Plains Rehabilitation Services, attached to St. Alexius Medical Systems in Bismarck, also has almost everything the Crohn's patient might need. I use MedEquip both because my doctors recommend it, and because it is more convenient to my home. MeritCare in Fargo, and Trinity Health Services in Minot have the same type of facilities for North Dakotans who live closer to those communities. In Grand Forks, the University Medical Center provides both medical services and medical equipment.

The majority of restaurants in the area, and probably in the state, are the "meat and potatoes" restaurants favored by rural farming and ranching communities, which is not at all to say that they don't serve good quality food, or that there aren't exceptions. My personal local favorite is Krohl's Diner (see my article about it); I can count on a non-spicy and non-greasy soup, white bread, and the best egg salad in a four-state area. The service is A+ too. I also Perkins, a chain of restaurants that focuses on breakfast, but has meals for every time of the day as well. Almost any restaurant can work for someone with Crohn's disease or ulcerative colitis; the main things to remember are to eat small amounts of food, and limit the amount of high fiber and raw vegetables that you consume. Find out where the restroom is as soon as you go into the restaurant, and if you can be seated near it, do. Make sure your exit from the table isn't blocked by someone else's chair. For more tips on eating out with Crohn's, check out yet another of my AC articles, A Guide to Eating at Restaurants for Anyone with Crhon's Disease.

I wish I could provide a long list of groups, individuals, and centers that provide support for Crohn's specifically or inflammatory bowel disorders more generally. But there are so very few groups to find here. North Dakota is a rural state, with a small and scattered population. Before the present computer age, support groups for any illness or addiction were very hard to find, and anonymity in small rural towns was impossible. Now we have a few cities, but most of our support is still to be found online. The majority of towns don't have the population for a support group of any kind; driving during the winter is unpredictable at best, and with Crohn's, often impossible. From the quiet and anonymity of our own homes, we can go online and find someone, or better yet, some group, with whom we share a condition, and from whom we can find support, as well as give it.

The most honest and least biased of these is the Crohn's and Colitis Foundation, at www.ccfa.org. Another resource is www.crohnsandme.com, which provides moving stories from real people living with Crohn's disease, including Allie's story (she is fighting to make all restrooms available for individuals with IBDs or bladder disorders). One site, www.crohnsonline.com, has some good information, but users should know the site is funded by Abbott Laboratories, a pharmaceutical company, so their site might have an agenda. And for those seeking both medical and spiritual support, don't overlook http://DailyStrength.org, which provides support to individuals with a host of illnesses and other problems.