Mark Mumbauer is a man of many skills. He’s a member of Penn Medicine’s Information Services team, an avid cyclist, and a generous volunteer who has won multiple Penn Medicine CAREs grants. He’s also extremely good at mapping out all the nearby restrooms. After all, he’s had more than 20 years of practice.
What started as digestive issues and cramping in middle school advanced to monthly episodes of diarrhea by his mid-twenties. Then came the blood. “Everything got progressively worse, and eventually, I was diagnosed with ulcerative colitis (UC),” Mumbauer said. Finally learning the name of his condition — an inflammatory bowel disease (IBD) that causes inflammation and ulcers in the digestive tract — wasn’t enough, though. “I got down to 110 pounds and ended up in a wheelchair for six months. I was bleeding heavily every day. I was either on the floor in the fetal position or in the bathroom up to 30 times a day.”
Nearly ten years passed after his diagnosis before he got back on the road to health, and that long, complicated journey began at Pennsylvania Hospital.
Spinning His Wheels with No Relief
Nightmarish physical pain was compounded by a sense of loneliness. Mumbauer’s early attempts at treatment left him feeling the challenges ahead were insurmountable, as drug after drug failed to ease his symptoms. “I’d be sitting in clinics with people in their sixties calmly waiting for a routine colonoscopy, and I was in my thirties in tears and screaming in pain,” he said. “UC is a very isolating disease because what works for you won’t necessarily work for me.”
Fortunately, Mumbauer thrilled to discover that even on his worst days, cycling was one thing his body could still handle. “It was my saving grace in a lot of ways,” he said. When he joined Penn’s IS team five years ago, he decided to try seeking care from his new employer. After receiving years of “subpar” care elsewhere, he finally found a team that understood him. Nevertheless, as he made his way down the list of biologics, steroids, and immunosuppressants, he remained disappointed.
“Mark’s case was unusual because he didn’t respond to any treatments. His UC, complicated by severe hemorrhoidal disease, continued to affect his quality of life. At that point, it was time to bring the surgeons on board,” said Faten Aberra, MD, MSCE, co-director of the Inflammatory Bowel Disease Center. They decided that Mumbauer’s best choice was the total removal of his diseased colon and rectum and the creation of a J-Pouch.
Navigating the Bumpy Road to Surgery
Given the severity of Mumbauer’s disease, Joshua Bleier, MD, section chief of Colorectal Surgery at PAH, decided to split the J-Pouch surgery into three procedures over the course of eight months. “Our team has substantial experience performing these complex surgeries, and because these patients are often malnourished or taking high doses of medication, we employ a multi-stage, minimally invasive approach to avoid complications,” he said.
Bleier first removed Mumbauer’s colon laparoscopically and created an ileostomy — an opening in the abdominal wall that allowed the small intestine to release waste into an external bag. A few months later, he removed the rectum, created a J-shaped pouch from the end of the small intestine, and connected this waste-collecting pouch to the anus. Finally, he closed the ileostomy and re-attached the pouch to the small intestine to restore gastrointestinal continuity. An hemorrhoidectomy was also performed, bringing Mumbauer’s surgery count to four, with eight to 12 weeks of recovery time in between.
“I felt like a professional inpatient! I received great care throughout my experience. My nurses were especially phenomenal,” Mumbauer said. “But it definitely was a physical and emotional roller coaster because I’d have one procedure, recover and start feeling good, then go into another surgery.” Still, he could finally see a comfortable “new normal” on the horizon. He stayed motivated by remembering that soon enough, he’d be back on a bike — and some of his caregivers even joked about keeping a bike in his room to boost his recovery.
Kicking Recovery into High Gear
One year later, Mumbauer is going great. “I’m not bleeding every day! I have energy, and I can go out and do things. I’m still getting used to new patterns — Immodium during the day, Metamucil at night, water all day long — but things like cycling, time with my family, and seeing a therapist regularly help get me through the ups and downs,” he said. “And definitely no spicy foods.”
As he considers the long road that led to the elimination of his UC, he’s grateful for his doctors, nurses, IS team, and everyone else who helped him each step of the way. He also gave a special shout-out to chaplain Madeline Dawson, noting that as “a person of deep faith,” having someone that he could talk to as he navigated difficult emotions was extremely helpful. A strong support system kept him going, and Mumbauer is interested in sharing that same committed support with others struggling with IBD via a support group.
“Right now, I’m focused on figuring out how to eat, how to advocate, and how to spread awareness of this disease,” he said. “I mean, I’m already the health system’s poster child for cycling advocacy, so why not add this? One of my hashtags the UC community has given me is ‘no colon, still rollin’!’ I’m six pounds lighter, but I can still get back on the bike. UC is tough and recovery is tough, but you can still do the things you love.”