Sharing Mayo Clinic: Lifting the weight of debilitating inflammatory bowel disease

Sharing Mayo Clinic: Lifting the weight of debilitating inflammatory bowel disease

By
Dana Sparks

October 13, 2019

Marissa Russo has been battling symptoms of inflammatory bowel disease for half her life. When a flare-up that lasted several months had her confined to bed and barely able to function, she turned to the expertise of Mayo Clinic for a new approach to treatment.

Fitness, nutrition and health are incredibly important to Marissa Russo. She's been doing CrossFit for the past six years and is used to exercising five times a week. And Marissa has maintained that pace despite dealing with the symptoms of inflammatory bowel disease for nearly 20 years.

For a time, however, as her medical condition spiraled downward, Marissa's ability to continue her active ways appeared to be in jeopardy. Then she turned to Mayo Clinic, where she found help from Michael Picco, M.D., Ph.D., chair of Gastroenterology and Hepat o logy and a specialist in inflammatory bowel disease at Mayo Clinic in Florida.

"Dr. Picco and his team are the Cadillac of GI services. They do what it takes to get you whatever tests you need," Marissa says. "They are very quick to respond, and they're advocates for you. They make you feel like you're their number one priority from start to finish."

Disturbing decline

Inflammatory bowel disease is an umbrella term that describes incurable disorders that involve chronic inflammation of the digestive tract. Ulcerative colitis and Crohn's disease are the two main types. Marissa began experiencing symptoms of inflammatory bowel disease when she was in her early 20s.

"It all started when I was about 22 years old," Marissa says. "I couldn't keep any weight on. Every time I would eat something, I felt like I had to use the restroom immediately."

When she started noticing blood in her stool, Marissa went to a gastroenterologist who diagnosed her with Crohn's disease and began treatment by prescribing Marissa anti-inflammatory drugs, including corticosteroids and sulfasalazine. The medications, which she took for 10 years, improved her symptoms. But when she was approaching her 38th birthday, Marissa's condition took a turn for the worse.

"My symptoms were becoming more frequent and harder to put into remission," Marissa says. "I went from taking the drugs for two weeks to having to be on them for four to six weeks. I would go six months without being able to get my flare-ups under control."

"(The bowel spasms) felt like birthing contractions, and I would literally see stars because I was in so much pain."
Marissa Russo

Her local doctor prescribed different medications. But none of them put Marissa's condition into remission, and they had significant side effects, including severe nausea that made it hard for her to do her day-to-day activities.

Then when she turned 39, Marissa began to experience the worst flare-up she'd ever had. It started in November 2017 and lasted through February 2018. During that time, Marissa was having 16 bowel movements a day.

"I was passing blood coupled with tissue during my bowel movements. I also had severe cramping from bowel spasms every 20 minutes," Marissa says. "They felt like birthing contractions, and I would literally see stars because I was in so much pain."

Too weak to drive her two kids to school, Marissa had to enlist help from neighbors, family and friends. Frustrated and in hopes of finding a solution, Marissa did some research and tried home remedies. They helped somewhat, but she remained in considerable pain. Marissa and her husband decided it was time to get another medical opinion.

"My doctor at the time wasn't listening to me," Marissa says. "So my husband said, 'We're getting you to Mayo Clinic.'"

Promising treatment

Marissa had a consult with Dr. Picco at Mayo Clinic in Florida on Feb. 15, 2018. That appointment followed two weeks of excruciating pain during which she lost 20 pounds.

"By the end of 14 days, I went from looking healthy to looking emaciated," Marissa says. "The first thing that went through my mind was, 'Am I going to live through this?' I thought there was a chance that I wasn't going to make it, and I was losing hope."

To get a better understanding of Marissa's condition, Dr. Picco ordered a colonoscopy. "There's no one test to distinguish between ulcerative colitis, which involves only the colon, and Crohn's, which can involve either the colon or both the colon and small intestine," Dr. Picco says. "The colonoscopy showed that Mrs. Russo had a pattern of inflammation in the large intestine which made it difficult to determine if she had ulcerative colitis or Crohn's disease. If it's not absolutely clear, we treat the patient with medications that are effective for both."

"It seemed like once (Dr. Picco) found out what was really going on, he immediately had a solution."
Marissa Russo

Dr. Picco recommended Marissa undergo treatment with the medication infliximab, which is used to treat ulcerative colitis and Crohn's. It involves three IV infusions over six weeks. Then if that is effective, the medication is given every eight weeks.

"I felt so relieved to have an answer and feel like there was going to be a solution to my problem," Marissa says.

Dr. Picco explained that Marissa would need to continue the medication as long as it was well-tolerated and effective, and that at some point, it could stop working because some people eventually develop antibodies to the drug. If that happens, a higher dose, a shorter time between treatment or both can help maintain the medication's effectiveness.

Marissa's interactions with Dr. Picco kindled new optimism in her. "He listened. He allowed my husband to share his concerns, and he explained things in a way that we could understand," Marissa says. "It seemed like once he found out what was really going on, he immediately had a solution. He told me, 'You will get better.' That's all I needed to hear."

Achieving remission

Marissa began the treatment with infliximab the following week, and she saw immediate results. "I went from having 20 to 30 spasms a day to having four to five the day after the first infusion. A week later, I had no more spasms or blood or tissue in my stool. It was a wonder drug," Marissa says. "For the first time in a long time, I felt like I was actually living."

Marissa continued to see Dr. Picco for follow-up appointments every two weeks for the first six weeks of her treatment and then every four weeks for the following two months. Results from a six-month follow-up colonoscopy in August 2018 showed there was little to no inflammation in Marissa's digestive tract.

"For the first time in a long time, I felt like I was actually living."
Marissa Russo

Around that time, her husband, a Navy pilot, received orders to go to Japan. But because of Marissa's illness, they were denied medical clearance to go overseas. "Dr. Picco wrote up additional information about my treatment, and how he was a proponent for my family to go to Japan if the treatment could be continued," Marissa says. "We appealed, and were approved to go to Japan in October."

Marissa and her family have been in Japan since January, and her medical condition has remained stable. "I've been on this treatment for a year and a half, and it's still working for me," Marissa says. "My hope is that it will keep me in remission through next summer when my husband's overseas tour ends."

Relishing family life

In addition to allowing her the freedom to travel, the treatment has made it possible for Marissa to go back to the gym and return to her CrossFit routine.

"In March 2018 I could no longer do a pullup. I couldn't jump more than three inches off the ground," Marissa says. "In about 60 days from the start of my infusions, I had 75% of my original strength. That was a pretty quick turnaround."

She's also now able to do many of the things for and with her children that she was too weak to do because of her illness. "I'm most grateful that I'm able to function for my kids — that I'm able to be a mom the way I was before the flare-up," Marissa says. "It's wonderful to be able to lead our normal life as a family, which involves fitness and travel."

For Dr. Picco, helping people like Marissa who have inflammatory bowel disease live the way they want to is the goal of the expert care he and his team provide. "We offer the ability to have one place for care," he says. "We do tests to determine if treatment or medications need to be modified. And we're well-versed in all the medications and how to maximize their effectiveness. This is a very complex disease that requires very specialized care, including appropriate management, monitoring and follow-up."

HELPFUL LINKS