By Rolf Benirschke

Every parent’s greatest fear is the loss of a child. With Jake being given less than a 10% chance of surviving surgery, Kristin, his mom, and Barb, his grandma, feared the worst. So when the GI surgeon entered the post-surgical waiting room and told them that Jake was in recovery, and to save his life she had created an ileostomy, they were incredibly relieved.

Endless Challenges

Grateful that Jake’s life had been spared, but terrified about his future because the last words Jake had uttered as he was being wheeled into the operating room were, “I’d rather die than wear a bag.”
For 21 years Jake had endured more health challenges than most of us will face in a lifetime including diabetes, pancreatitis, hypertension, stage three liver disease and kidney failure that necessitated a gastric bypass when he was 20. On top of all of that, he had been diagnosed with ulcerative colitis, and it was his first major flare-up that landed him in an emergency room while vacationing in Florida for his 21st birthday. Recalling that horrendous time, Jake says with a chuckle, “Little did I know, I wouldn’t get my first legal drink until a full year later.” And what a year it would turn out to be.

Accused of Lying

After being released from the hospital in Florida, Jake headed home to Ohio, where he was admitted into the local hospital where surgeons then removed what they believed to be the source of his problem – his gall bladder. Unfortunately, that didn’t alleviate his pain and it worsened to a point where he tearfully confided to his mom, “I want to tell you now that I love you because I feel like I’m going to die.”
Unnerved by what she was hearing from her precious son, Kristin decided it would be best to take him to a different hospital. Soon after they arrived, Jake was accused of fabricating his medical condition to get painkillers. There was an air of suspicion surrounding every encounter and Kristin knew they would not find the help Jake needed there. “It became quickly apparent to me that we weren’t in the right place,” she shared with a wry smile.
They made the decision to move Jake to the University Hospitals Cleveland and immediately upon arrival felt a sense of renewed optimism and hope that he might recover. Jake was monitored closely and began receiving Remicade infusions for his ulcerative colitis.
They lived day to day and their hopes rose and fell with the results of each new set of labs and vitals. For Kristin, it was very hard to sit at Jake’s bedside around the clock and feel helpless, “Watching my 21-year-old son, who had always been strong and rarely complained about anything, lying there in a hospital bed whimpering in pain. It was almost unbearable at times, and I would have done anything to just take his pain myself.”

I’d Rather Die

Even with all the doctors were doing, Jake continued getting sicker and sicker and days turned into weeks. Barb remembers the despair she felt during that time. “It felt like we were watching him just waste away,” she recalls. Finally, the attending surgeon entered Jake’s room one evening and said very matter-of-factly, “We’re taking your colon out tonight,” and then abruptly left. With all three of them in shock, the room was quiet – until Jake broke the stillness by declaring, “I’m not going to live with a bag. I’d rather die.”
With the decision finally made, Kristin described a perceptible wave of relief washing over them and the prayers of Kristin and Barb changed instantly – from “begging for a miracle to save Jake’s colon to praying for a miracle to save his life.”
Following the surgery, Kristin still struggled as she dealt with her fears of caring for Jake and her own feelings of anger and denial. After all Jake had been through, this felt like the knockout blow. It simply wasn’t fair. She recalls being very mad at God and feeling guilty about it. After all, her son’s life had just been spared. Shouldn’t her response be gratefulness?

From Anger to Acceptance

Facing the reality of Jake’s new condition was tough, she remembers. Jake was nearly despondent, refusing to look at his stoma and not caring whether he lived or died. But, within 24 hours, Kristin moved from anger to acceptance and credits that shift to focusing on gratitude that Jake was alive and also understanding how her response would affect Jake. “I didn’t want to accept it at first, but I knew I had to for Jake,” Barb said.
The day they brought Jake home from the hospital Kristin said her “excitement was off the charts,” but so was her fear. Her mind was racing with questions like, “What if our bathroom isn’t big enough? What if I can’t handle taking care of his wound?” And as a mother who wanted to restore her son’s independence, she wondered how much she should do for him and how much she should make him do for himself.

Everyone Poops

Kristin determined early on that she was going to approach their challenges with a sense of humor. She knew that if she freaked out, it would make things even harder on Jake, so she repeated the mantra of “everyone poops” to help him feel like this was normal and very manageable. Several leaks early in the evening on their first night home tested that sense of humor and the final exam came at 12:45 am with the “poopapocalypse.”
Kristin remembers Jake frantically calling out to her that he had a “leak.” She stumbled, half-asleep into his room to find that his bag had actually come completely unattached and its contents had spilled all over his wound, his stomach, his pajamas and his sheets. It was a complete disaster…and it smelled awful!

Trooper Through It All

Through it all, Jake was a “trooper” and kept a smile even as they decided to cut off his brand-new shirt rather than try to pull it over his head. Those early days were hard for Jake and his mom as he struggled with the physical pain of his healing wound and the despair he felt about the future.
For him, the road to acceptance of his ostomy was a long and winding one that smoothed out a bit as he began to regain his independence. When Jake was finally able to return to his work with special needs adults, he found his purpose in life again by directing his energy to giving to others instead of focusing on his own problems.
It has been a year now since Jake’s surgery and it’s been a difficult road to recovery, but all three agree that his journey changed them all…for the better. Kristin describes her relationship with Jake before his illness as “oil and water” but now they both genuinely enjoy being together and have a deep sense of appreciation and gratitude for each other. Grandma Barb developed a whole new respect for Jake as she watched him battle to take back his life and proudly says, “He is our hero, plain and simple. Jake is our hero.”

Rolf Benirschke was the placekicker for the San Diego Chargers for 10 seasons, but his career nearly ended because of a difficult battle with ulcerative colitis. He would require ileostomy surgery but returned to play in the NFL and has been educating and encouraging ostomy patients and WOC nurses ever since. His illness led him to start his patient engagement company, Legacy Health Strategies, and author three books, including his autobiography, Alive & Kicking. He is married and the father of four children, three with special needs. www.rolfbenirschke.com.