When Crohn’s takes holdAbout 1.4 million people in the U.S. have either Crohn’s or ulcerative colitis; region has pockets of disease
By: Kevin Bonham, South Washington County Bulletin
Editor’s note: Staff Writer Kevin Bonham, a native of Mandan, N.D., has been treated for Crohn’s disease since 2007, although IBD symptoms initially were diagnosed in the mid-1990s. Staff Graphic Artist Bobbi Berberich DuChamp, a native of Oklee, Minn., is being treated for ulcerative colitis and has been battling IBD since 1990.
BEMIDJI — Tiffanie Malwitz was just a year out of high school in the spring of 2005, playing fast-pitch softball at Northland Community and Technical College in Thief River Falls and studying to be a nurse, when the pains started.
“I’ve always been a very healthy person, and I was pretty fit,” she said. “But I started having horrible stomach aches, and blood in my stool.”
The symptoms would disappear for a while, a few weeks, perhaps, and then get worse again.
“I just ignored it for a long time, because nobody wants to deal with that when you’re 19 years old and living with a bunch of roommates,” she said
So, the native of Plummer, Minn., kept it mostly to herself. After graduating that spring from NCTC, she moved to Bemidji to attend Northwest Technical College.
When the symptoms returned, she finally decided to see a doctor. It was September 2005.
“I was bent over all the time, in horrible, horrible pain,” she said. “And when I went to the bathroom, it was just like solid blood. That’s all it was, just bowel movements of blood.
She had a colonoscopy, which revealed that she had an inflammatory bowel disease, either Crohn’s disease or ulcerative colitis. The doctor told her that on a scale of 1 to 4, with 4 being the worst, she was at a 3.5.
While the symptoms and treatments are similar, only more testing would tell for sure which it was. Essentially, ulcerative colitis affects the colon only, while Crohn’s disease causes inflammation anywhere in the gastrointestinal tract, not necessarily in the colon, but anywhere from the mouth and eyes to the rectum.
Over the next three-and-a-half years, she took a series of medications, including steroids, to try to send the disease into remission. She became steroid-dependent.
Ultimately, doctors at Mayo Clinic in Rochester, Minn., said surgery was the only option. So, between December 2008 and April 2009, she underwent a series of operations to remove her large intestine, rectum and appendix.
Pockets of disease
In the five years since she was diagnosed, Tiffanie, now Tiffanie Malwitz Dugstad, has learned she’s certainly not alone, especially in her hometown.
At least 10 people in their 20s and 30s who grew up within a 40-mile stretch of U.S. Highway 59 and Minnesota Highway 92, from Plummer to Oklee to Clearbrook, have been diagnosed with either Crohn’s or UC.
One of her friends, Chase Stockwell, 23, was diagnosed with ulcerative colitis in January.
He will have the last in a series of four operations in October to remove his colon.
Stockwell’s older sister, Chelsea, has had Crohn’s disease for about 10 years. The disease is being managed with medications, quite possibly because it was diagnosed when she was in her early teens, before it had progressed too far, he said.
Unlike Tiffanie, Chase had symptoms for only a few weeks before his diagnosis.
Chase said the likely reason that he wasn’t diagnosed earlier was that he had been taking medication for a previous condition, adrenal deficiency, which may have helped to keep his UC symptoms at bay.
“It is unusually high,” Dr. Michael Kappelman said of the 10 cases among young people in the Plummer-Clearbrook area, even while acknowledging that the 20s and 30s are the peak years of IBD diagnosis.
Kappelman is a pediatric gastroenterologist at the University of North Carolina and lead author of a 2007 study, “The Prevalence and Geographic Distribution of Crohn’s Disease and Ulcerative Colitis in the United States.” It was published in Clinical Gastroenterology and Hepatology.
Prevalence of Crohn’s and ulcerative colitis is higher in the Midwest, which includes North Dakota and Minnesota, and the Northeast than in more southern regions in the country, according to the study.
“Some regions are going to be high and some are going to be low,” Kappelman said in a telephone interview. “Whether there’s something in that particular area that is spurring the disease on is certainly a possibility. As an epidemiologist who studies the disease, these issues are worthy of exploring.”
A 2004 study, “Clinical Epidemiology of Inflammatory Bowel Disease: Incidence, Prevalence and Environmental Influences,” by Dr. Edward V. Loftus Jr., from Mayo Clinic, looked at one Minnesota County, Olmstead, in relation to other regions, including parts of Manitoba, as well as Europe and Asia.
That study, published in “Gastroenterology 2004”, estimated the prevalence of Crohn’s at 174 and ulcerative colitis at 214 per 100,000 people in Olmstead County.
“I particularly think that looking at areas where pockets of disease are found is a promising way to better understand the causes of the disease,” Kappelman said. “I wish there were more epidemiologists looking at this.”
Crohn’s and ulcerative colitis are not reportable illnesses, so the national Centers for Disease Control does not track them as it does for cancer and other diseases.
The Crohn’s and Colitis Foundation of America estimates that about 1.4 million people in the United States have either Crohn’s or ulcerative colitis. Between 7,000 and 46,000 people are diagnosed annually with ulcerative colitis and between 10,000 and 47,000 with Crohn’s.
Its cause remains unknown and there is no known cure.
The Mayo study concluded that while the root causes of IBD have not been identified, environmental factors can affect the incidence and prevalence.
“The strongest modifying factors identified thus far include family history of IBD, cigarette smoking and appendectomy,” Loftus concluded.
A study in Sweden suggested that second-hand exposure to cigarette smoking in childhood increased the risk of Crohn’s but not ulcerative colitis.
The study also showed that people who have had appendectomies are somewhat less likely to develop IBD.
Kappelman believes that higher incidence rates in the region likely are the result of a combination of genetic and environmental factors.
CCFA data indicates that early diagnosis can help to manage the chronic disease, by allowing physicians to work with patients to find the right treatment to keep the disease in remission.
That’s one of the main reasons Dr. Ari Taheri opened an independent facility, Fargo Gastroenterology and Hepatology Clinic, five years ago, after spending 12 years at Fargo’s MeritCare (now Sanford Health).
She said she saw a need for a specialty clinic that offered a small nursing staff and short waiting times. She also sees patients from the northern Red River Valley at an office at the Aurora Medical Park in Grand Forks.
Today, Taheri sees more than 200 patients with either Crohn’s or ulcerative colitis.
“We are aware that these patients are, at times, quite ill and frustrated with their disease,” she said. “With a small practice, seeing and talking to familiar staff make them so much more comfortable and more compliant with treatment.”
Most medical centers in Fargo and Grand Forks offer gastroenterology services.
In the past five years, Tiffanie has tried to live a normal life.
She married Carl Dugstad, a social studies teacher and basketball coach in Bemidji, in August 2007, even as she was suffering through some of her worst experiences with the disease.
Over the next year, she was hospitalized about every three or four months.
“That was the year it just turned,” she said. “I had a flare that summer, and I figured it was from stress and everything. But we got it calmed down.
“Later, I was in RN school when I had a horrible, horrible flare. I couldn’t move. I couldn’t do anything.”
She had become steroid-dependent. She developed an allergic reaction to one of her drugs, which knocked out an entire spectrum of potential treatments.
Then, in November 2008, after another colonoscopy, doctors decided the best course of action was to remove her colon.
She got an appointment at Mayo in December 2008.
“I was so sick I went everywhere in a wheelchair. I didn’t really walk very much,” she said. “When I went to the bathroom, it was just solid blood. Then, I started vomiting, nothing would stay down.”
Two days later, she had surgery, with doctors removing her entire colon, her rectum and appendix.
The ileostomy also involves stretching and folding the small intestine into a pouch, called a J-pouch, which is used as a reservoir for waste. While the small intestine heals, a temporary ostomy — an external ostomy bag — is used to store waste. After it heals, the internal J-pouch is connected to the anus to provide for bowel movement.
“They attach the muscles, so you still have control over it,” Tiffanie said.
For Tiffanie, the procedures didn’t go as well as doctors had hoped. She had a series of complications, and was in and out of the hospital for the next four months.
Finally, in April 2009, she had what is called take-down surgery.
“They take down your ostomy, then hook you back up, so then you start going to the bathroom again like a normal person,” she said. “Life changed after that.”
Tiffanie said she still gets occasional flares — she’s had three or four of them in the past 16 months.
“It happens when there’s an overgrowth of bacteria in your new pouch, which is your new rectum,” he said. “It’s just because it’s not used to doing its new job, holding stool and stuff.”
Today, she’s working full time as an registered nurse in the anti-coagulation department at Sanford Health in Bemidji.
“I still go to the bathroom, like six or eight times a day,” she said. “Your diet changes. You don’t digest anything. I can eat vegetables and stuff. I can eat a carbs and protein, potatoes, chicken, bananas and oatmeal.”
Wheat and whole grains are not allowed.
“Anything healthy for you, I can’t eat. It goes right through,” she said. “If I want pizza and a beer, I have to really plan ahead and take Imodium.”
She also has become familiar with public restrooms throughout northern Minnesota, searching out the more private facilities in stores and businesses in town and on the road.
“It’s become a way of life,” she said. “And I know where every private bathroom is between here and pretty much anywhere.”
Today, she travels to Rochester about once a year to see her gastroenterologist.
“I can live with that,” she said. “If I hadn’t had my colon taken out, the chance of me getting colon cancer would be really high.”
Tiffanie doesn’t of anybody in her family or extended family with any history of ulcerative colitis or Crohn’s.
She and Carl are looking forward to raising a family.
"For Carl and me, we always just wanted to live the normal life,” she said. “But we always had doctor bills, and with me it always was not feeling well, we just didn’t think about pregnancy, we put that off into the future sometime.”
That future might be getting closer.
“That’s a huge question right now,” she said, “but as far as I know, everything’s fine.”
And Tiffanie wants to return to school, to become an ostomy nurse, one who specializes in helping people through the long and emotional process that she endured.
“For the past three years, when I was going through all of this, I figured it could always be worse, that there are people who are worse off than me,” she said. “I think my experience should help me help others.”