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Jillian's Long Battle Against Crohn's Disease

Jillian, UW Health Digestive Health Services patient, with her daughterMadison, Wisconsin - In 1994, Jillian was just entering her senior year of high school. Unfortunately, she spent the first six months of that academic year with doctors, who did extensive testing to try to figure out what was wrong with her digestive system.

 

Back then, not as much was known about Crohn's disease, and she wasn't thrilled about what her doctors taught her about this debilitating disease.

 

Determined not to let her disease slow her down, but struggling with the realities of it, Jillian spent the second semester of her senior year being home schooled. Even though she dropped out of college twice due to hospital stays, she battled on.

 

"After my initial diagnosis I was pretty angry and defiant," said Jillian. "I often ignored my doctor's recommendations and I spent many years pretty sick. If I had listened to them, I likely could have avoided those bad times."

 

After moving out west, she returned to Wisconsin in 2004, where she was referred to UW Health Gastroenterologist Mark Reichelderfer, MD. At that time, most people with Crohn's disease were managed with high doses of Prednisone. Unfortunately, that drug caused avascular necrosis and Jillian needed a total hip replacement by 1997.

 

"Jillian had a very severe case of Crohn's," Dr. Reichelderfer recalls. "I was unhappy that the prednisone caused hip collapse at such a young age."

 

Battling on, Jillian used holistic medications for two years until the disease took over.

 

"I've been on every drug for Crohn's as well as some drugs still in the study phase," said Jillian. "I handled almost all of them well."

 

An allergy scare that put her in anaphylactic shock led her on to the medication she currently uses to control her symptoms.

 

"Fortunately," said Dr. Reichelderfer, "there are usually new medication options in the pipeline. At UW Health, the digestive disease team is doing multicenter research on several promising new medications for Crohn's." 

 

In 2009, when she was three months pregnant, Dr. Reichelderfer took her off her medication to protect the developing fetus. When she was 23 weeks along, she entered the hospital with multiple abdominal abscesses and internal bleeding.

 

"I was impressed with her determination," said Dr. Reichelderfer. "She is a very strong woman, and I see the difference her positive attitude had in managing her disease all these years."

 

Jillian was hospitalized until she had a c-section at 34 weeks. "Then my daughter was born," said Jillian, "and my husband and I celebrated how beautiful and healthy she was."

 

Still on the operating table, surgeons completed a tubal ligation, bowel resection and a spleen repair.

 

"I got my miracle when Johanna was born," said Jillian. "But I knew I couldn't survive another pregnancy. There was just too much damage from my disease."

 

Jillian has done well since her surgery. Although she still suffers on bad days, they are few and far between. She still gets angry sometimes when she's having a bad day, but for the most part she says she "doesn't let Crohn's run my life."

 

Jillian has been invited to share her journey with recently diagnosed patients, which makes her feel helpful.

 

"I try to educate them, or just be there to listen, said Jillian. "It's an awful time for anyone, but I never thought remission could be possible with severe total body Crohn's like I have. Dr. Reichelderfer and the UW Health Digestive Health Services team have made that possible." 


Date Published: 10/15/2012


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