Like so many strange body changes, Kathy Wilkinson blamed her intestinal problems on the pregnancy that brought her bright-eyed, red-haired Allison.
But soon the cramps were "worse than labor," keeping her up for hours at night. Over the course of the next few years, her weight would fluctuate between 95 and 143 pounds. She would often feel nauseated, and she soon stopped leaving the house for any length of time because of diarrhea and the nausea.
A colonoscopy showed that she had Crohn's disease, a condition that includes an abnormal immune response with chronic inflammation of her intestines, canker-like sores in her colon and a series of bowel obstructions. It's not usually life-threatening, but it's also not curable.
An estimated 1 million Americans, including about 7,500 Utahns, have Crohn's disease or ulcerative colitis, the two conditions that are called irritable bowel diseases. The two are similar in many ways, and sometimes it's hard to determine which one is to blame for the symptoms, but they are two separate conditions. Shared symptoms include diarrhea, bleeding, cramps, weight loss and eventual formation, in some cases, of colon cancer, though it's less likely with Crohn's disease.
There are a few significant differences between Crohn's and colitis, said Dr. Sandy Brown, gastroenterologist. Crohn's can afflict any part of the digestive tract, though it's most common at the end of the small intestine and the beginning of the large intestine. Ulcerative colitis stays in the colon. Crohn's can go throughout the tissue, while colitis stays in the lining, a more surface disease, though miserable nonetheless.
And while removing sections of the colon impacted by colitis cures that condition, even people such as Wilkinson who eventually have their entire colon removed may get a recurrence of Crohn's.
Those afflicted are usually young. Even children and teenagers can have the condition, which is most commonly diagnosed in people 15 to 35. Wilkinson, now 33, was 27 when her symptoms appeared. And Crohn's is not a disease you ever outgrow, though symptoms may become milder in elderly patients, Brown said.
Doctors at first thought she had irritable bowel syndrome, a less serious condition, perhaps caused by stress. She hadn't lost weight and her blood pressure wasn't low — two markers of Crohn's. A physician told her to be glad it wasn't Crohn's. "Be grateful. It's awful," she quoted him as saying.
Only, it was Crohn's.
And he was right. It was awful.
There are degrees of the disease, which has no gender bias. Wilkinson has a friend diagnosed with Crohn's who must avoid certain foods because they make her miserable. Wilkinson had to fight the urge to avoid all foods, fluctuating between feeling like she couldn't eat anything because it would make her sick and "feed me anything, because I'll be sick anyway."
Its exact cause isn't know. Physicians believe there's a genetic component, but that alone doesn't seem to do it. Most people with the "right" genetics for the disease don't have it. Some believe the "trigger" is an infection that breaches the lining of the digestive tract. When the infection goes away, the immune system doesn't turn off — can't be turned off. It keeps things riled up.
Brown describes Crohn's as a Bell curve, with a few people who never have a good quality of life and a few who are hardly troubled. The other 90 percent deal with symptoms that can often be managed, even wrestled into a remission, usually followed by periodic repeat episodes. But there's no promise because there's no cure. And the medications that treat symptoms are "fraught with a lot of side effects" over time, Brown said.
Wilkinson had been a schoolteacher until the birth of her son, Ryan, now 8. Then she'd begun tutoring at home. When she got sick, she had to quit that. Her illness was too unpredictable. And she never did achieve a remission.
Doctors started by taking her off dairy products. They tried various medications to control her symptoms. She lists all of the medications she was taking at the same time at one point in her treatment: two anti-inflammatory drugs, a steroid, another drug that's normally used for rheumatoid arthritis and for some reason helps Crohn's patients, a pain killer, two anti-diarrheal drugs and three different types of vitamin supplements, as well as a prescription enema.
She drank gallons of SlimFast or Boost meal-in-a-can supplements. She took Metamucil and antibiotics and the other medications were switched back and forth to find something that would work. Some would work for a time and then lose effectiveness.
She had to avoid vegetables unless they were soft to the point of soggy. Fruits were out. And the foods that irritated her kept changing, items moving on and off the list.
While diet in no way is responsible for Crohn's, it can increase the misery factor. The fiber that's so good for most people is hard on people with Crohn's, Brown said.
She limited her excursions to the middle of the day, when her intestine was basically paralyzed by medications, and kept such trips short. It hurt even to walk. The emotional toll not just on her, but on her family, was tremendous, she says.
She felt sorry for her husband, Jeff. "When you're married to some who has Crohn's, you're married to Crohn's."
And like most people with Crohn's, she was hospitalized. The foundation estimates that most Crohn's patients will be hospitalized, and two-thirds to three-fourths of them will have at least one operation for the disease.
Finally, she and her doctor decided her life would simply be better without the large intestine. And though recurrence is possible — foundation statistics say 20 percent have recurrence after two years and up to 80 percent have recurrence by 20 years — because her disease restricted itself to the colon, her doctor thinks it's unlikely to come back in her small bowel. Research suggests recurrence is less likely with an ileostomy than with less-drastic surgeries.
Because her small bowel's intact, she absorbs nutrition normally. She eats anything she wants. And despite the fact that she has an ileostomy that drains into a discreet bag on her abdomen, she finally has the freedom to engage in activities like swimming that bring her pleasure.
She can go to the grocery store without worrying about having problems. Or sit through a three-act play. And she's off the medications.
The only restriction she has, she says, is she can't eat popcorn. When she gets a craving for it, she fries Cheerios in butter and adds garlic salt.
Having an ileostomy is a drastic step that most Crohn's patients will never face. She was willing to take the chance if it would give her a "couple of good years." Her doctor told her it's apt to give her 60.
The goal, said Brown, is to find a way for the patient to manage the disease, instead of the disease managing the patient. Wilkinson's case was so extreme the colon had to be removed to put her back in charge. In most cases, diet and medications will do the trick, he said.
E-MAIL: lois@desnews.com