Therapy Options Expanding for Inflammatory Bowel Disease Patients

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woman tying shoesMADISON - As a teenager, Jillian Rosenberg had a "rock solid" stomach - she could eat anything she wanted and never get sick. But as a high school senior, all that suddenly changed.
 
When severe digestive problems hit, Rosenberg was diagnosed with Crohn's disease - a chronic disorder marked by inflammation of the gastrointestinal tract. With Crohn's, the body mistakes normal bacteria in the intestines for foreign or invading substances, and the immune system launches an attack. The abnormal response causes symptoms that can dramatically change a Crohn's sufferer's life - from persistent diarrhea and abdominal cramps to fever and even rectal bleeding.
 
Now 28, Rosenberg has been dealing with unpleasant symptoms of the disease and its periodic flare-ups for about 10 years.
 
"When you're first diagnosed, you're really down - especially when you're a young person. You think, 'I can never go party with my friends or go camping again.' Well, you can," says Rosenberg, a Madison resident and UW Health patient.
 
In fact, the outlook is improving for people with Crohn's disease and ulcerative colitis, collectively known as Inflammatory Bowel Disease (IBD). In the last decade, several medical and pharmaceutical advances have helped improve the quality of life for patients, and burgeoning research could lead to more breakthroughs.
 
"We're not exactly talking about curing Crohn's disease and ulcerative colitis in the next two or three years, but we're clearly talking about being a lot better able to treat it, to reduce symptoms, and to improve quality of life," says UW Health gastroenterologist Mark Reichelderfer, MD. "This really represents a time of hope for people."
 
Women and IBD
 
Nevertheless, female sufferers of IBD must deal with a host of additional issues, from irregular periods to risk of osteoporosis due to decreased calcium intake or absorption. For women, IBD issues include:
  • Sexuality
    In the midst of IBD flare-ups, it can be difficult for many women to feel like engaging in sexual activity. This is particularly true if they've developed fistulas, which are tunnels leading from one loop of intestine to another, or connecting to the vagina, bladder or skin.
     
  • Conception and Childbirth
    Though women with IBD can generally conceive as easily as other women, those who have had pelvic surgery to treat their conditions may have fertility problems.
     
  • Drug Treatment and Pregnancy
    Because there's no long-term data about how IBD drugs affect pregnancy, many women suspend their treatment before they try to conceive.

"There is also the genetic aspect," Dr. Reichelderfer says. "Obviously, one of the things parents want to know is, what are the chances of my baby having Crohn's disease if I have it?" Though there's not a single known cause for IBD, a gene has been linked to Crohn's disease.

 

Rosenberg isn't planning to have children in the immediate future, but she fears passing along her disease when she does decide to try to conceive. And because she had to have her hip replaced due to the bone-weakening side effects of the corticosteroid prednisone, she's not looking forward to possibly being bedridden during pregnancy.

 

"But if I do try and get pregnant, I will happily go through the problems that are going to come with it," Rosenberg says. "I'm trying to stay positive."

 

In fact, Rosenberg tries to maintain an upbeat attitude about all aspects of her disease, and she makes an effort to read and learn as much as she can about it. She considers herself lucky to be able to live an active lifestyle, with a healthy social life and a hectic work schedule in hospitality management.

 

New Drug Treatments and Surgeries

 

Rosenberg's positive outlook matches that of many physicians and surgeons who treat IBD. Doctors are now better able to manage patients' symptoms and can often avoid surgery or use techniques that are less life-altering for patients.

 

In the last decade, new IBD drug treatments have emerged that are not dependent on prednisone, a drug that treats chronic inflammation but has several side effects, including cataracts, bone and muscle weakening and weight gain.

 

New IBD therapies have centered on a group of drugs called biologics, which are proteins designed to reduce inflammation. Infliximab is currently the most widely used biologic, but more drugs are being studied, including in clinical trials at UW.

 

Years ago, the only surgical option for ulcerative colitis patients was ileostomy, which involves removal of the entire colon and rectum. The surgeon would then create an opening on the abdomen through which wastes are emptied into a pouch attached to the skin with adhesives.

 

At UW Health, an IBD surgery group has been revolutionizing ulcerative colitis surgery since 1984. UW Health's Colon and Rectal Surgery Program offers a technique called Ileal Pouch Reconstruction, which eliminates the need for a patient to wear a permanent external pouch. The procedure involves removing the colon, rectum and anal canal lining and using the end of the small bowel (ileum) to create a new rectum. When healing is complete, patients can go to the bathroom in a normal manner.

 

Advances in Crohn's surgery are also helping to conserve areas of obstructed small intestine that might otherwise be surgically removed.

 

Finding Support

 

Support groups are another area of growth in IBD. A Crohn's and Colitis Support Group meets at UW Health's 1 S. Park Clinic on the first Wednesday of every month. Meetings take place in the third floor conference room from 5:30-7pm.

 

"There are a lot of people that don't talk about it, or they don't have a place to talk about it," says support group leader Heather Stanton. "We try to stay away from the stigma of a 'support group' being a crying session. We laugh a lot and people share. There's a lot of frustration (with IBD), but just having a place to talk about stuff is valuable."

 

Adds Stanton: "People walk out feeling a little less stressed than when they came in."

 

Stanton frequently brings in speakers to discuss several aspects of IBD management - from workplace issues to diet and nutrition. To learn more about the support group, send an e-mail to ccfamadisongroup@hotmail.com.


Date Published: 06/20/2007


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