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Marvin Bush: "I'm lucky to be alive." (President Bush's son recovers from inflammatory bowel disease)(includes facts on disease)

The President's youngest son underwent major surgery for a disease most people don't talk about-now he is offering hope and encouragement to others with his painful disorder.

When Marvin Bush campaigned for his father during the 1988 presidential election, few people were aware that this tall, soft-spoken, athletic young man had nearly died two years earlier from a dangerous and misunderstood illness called inflammatory bowel disease (IBD).

"It's a disease people don't talk about," admits the 35-year-old Bush, who had his entire large intestine removed in emergency surgery at Georgetown University Hospital in 1986. "It's painful and it's unpleasant. Yet there are two million Americans affected by IBD (a collective name for Crohn's disease, which primarily attacks the large and small intestines, and ulcerative colitis, which strikes the large intestine and rectum). The only thing really shameful about it is that there is still no cure."

The second youngest of George and Barbara Bush's five children-and the youngest son-Marvin Bush lives with his wife and two small children in Alexandria, Va., where he invests in a variety of business ventures. He prides himself on being "the most private Bush," so becoming national spokesman for the Crohn's and Colitis Foundation of America (CCFA) took a special kind of courage.

"It didn't take guts to go public with ulcerative colitis; it took losing them," states a new public service announcement for CCFA featuring Bush, whose surgery resulted in an ostomy -an opening in the abdomen surgically created for the passage of waste. Like many of America's nearly one million ostomates, Bush wears a pouch attached to his body at the opening to collect waste.

"When you're lying there in the hospital, it's pretty scary to think about having to wear a pouch every day of your life," Bush confesses. "You wonder if you can go swimming (yes), if it will smell (no), if you have to take it off to shower (no). People think their lives will be dramatically changed. Well, I can tell them that, yes, their lives will be changed. They will live a pain-free existence. In my case, the surgery was a cure. So I'm hopeful that when people see somebody who has been through this, leading a full life, it will give them some sort of encouragement."

During a recent interview at his Alexandria office-which is adorned with pictures of daughter, Marshall, 5, and son, Walker, 18 months-Bush spoke frankly about his life-threatening experience. Like many people who get inflammatory bowel disease, Bush was young and strong when he first noticed the symptoms that came, he says, "right out of nowhere. I started to get cramps in my stomach. I'd feel a couple cramps hit me like a tremor before the big earthquake and I'd think, `What was that?'"

The cramps came and went, so Bush tried to ignore them. "Then I noticed some blood in my stool," he recalls. "But I had been healthy up to that point in my life and thought maybe it was an aberration. So I disregarded it. I was just 29, and I thought that I was invulnerable."

Over the next few months, Bush began making increasingly frequent trips to the bathroom and losing weight. "I lost maybe 10 pounds in eight months without trying-I was eating like a horse," he says. "I began to wonder if there was something wrong . . . at best a hemorrhoid, at worst an ulcer."

At that time, the summer of 1985, President Reagan's colon cancer made national news. From the family vacation home in Kennebunkport, Maine, Bush watched the media bombard the nation with graphic depictions of the human digestive system.

"One interview in particular really hit home," he remembers. "I had every symptom the doctor mentioned-blood in the stool, diarrhea, weight loss, and chronic fatigue." Hearing about Reagan's cancer changed Bush's mental "best-worst" scenario. "I thought, best case ulcer," he says. "Worst case cancer. Then I heard that there was a run on doctors, with mostly false alarms, so I waited a little bit more."

Finally, in the fall of 1985, the worsening pain, weight loss, and diarrhea led Bush to see a specialist who made a preliminary diagnosis of ulcerative colitis-a chronic, painful condition that inflames the digestive tract. Because IBD mimics the symptoms of other diseases, it is difficult to diagnose. Contrary to common misconception, it is not caused by tension or worry, nor is it linked to eating certain kinds of foods.

"Right now scientists don't know what causes it," Bush notes. "But they feel they are close. That's why at the foundation we call the '90s, `The Decade of the Cure.'"

Bush started medication to alleviate his symptoms. But the drug, sulfasalazine, caused a severe allergic reaction.

"My face got swollen up and I looked like a guy who's been in a fire," he says. "I went to the hospital and they stuck an IV in me to calm things down."

Over the next several months, Bush tried other medications-often with unpleasant side affects. But nothing completely controlled the illness. "Sometimes I'd feel great ... then I'd get hit again with this agonizing pain," Bush says. "There's a lot of anxiety because you never know when you're going to have a flare-up, complete with high fever and sweats. You feel as bad as you've ever felt in your life, and you don't know how long it's going to last."

Particularly traumatic was the loss of bowel control. "I was in a meeting one time and pfftt, there it was," he recalls bluntly. "And the pain can be unbelievable. Your stomach coils and coils until you think it can't coil any more, then you get another cramp and you just want to curl up and die."

By spring, Bush was "completely worn down. I remember trying to watch a video of Prizzi's Honor with my mom. My wife was in Richmond and my Dad was away on a trip ... I'd gone to the bathroom about three times during the movie to use the toilet and to retch.

"My mom said, `Marvin, let's go to the hospital,' and I said, `Okay.' I'd had enough."

Bush checked into Georgetown University Hospital in April 1986, confident he Would be out quickly after some tests. "The nurse brought me one of those humiliating little gowns made for someone who's about 5'1"," says Bush, who is 6'3 1/2". "It came straight to crotch level on me. My mom came in and said, `That's cute, Marvin,' and I said, `Don't worry, I'll be home tomorrow.' Five weeks later, I came out of the hospital having had the surgery."

In the hospital, doctors confirmed the earlier diagnosis of ulcerative colitis. Bush became unable to keep food down and weighed a rail-like 140 pounds. He began to bleed internally and was on potent pain medication. Surgery became necessary for survival.

"In my case, I woke up having the surgery, and I'm glad that's the way it was, now," Bush says. "If I'd had six months to ponder it, I probably would have said no and had the disease continue to recur until finally it became an emergency. I tell patients I talk to now that it's a tough choice, but people typically adapt beautifully to the ostomy for one main reason-they live a pain-free existence for the first time in years. In my case, the ostomy is a cure. But it's rough for someone who's 17 years old and dating. You think your life is over. I'm very lucky to be married to someone who doesn't care about superficial things."

Bush's wife, Margaret, whom he'd met when they were both students at the University of Virginia, battled ovarian cancer as a child and spent a year and a half in the hospital when she was about 10 years old.

"This little thing I went through was pretty minor compared to that," says Bush, whose wife spent most nights in a cot alongside his hospital bed. "It gave her the strength to deal with my illness from an emotional standpoint. I'm in an extraordinary lucky position because I had so much emotional support. My parents were nearby, my mom was with me for a good part of each day, and my dad visited each morning and every night. My siblings were always calling and writing, and we have tons of friends who were writing, and we have tons of friends who were with me every step of the way. Then, because of the profile of my father there was this wave of empathy from people we never met."

One of those people, Rolf Benirschke, former place-kicker for the San Diego Chargers, called Bush in the hospital after the surgery.

"I'd woken up in a daze, realizing that my stomach hurt, but I didn't feel that other thing-the fevers and the pain," Bush recalls. "When I looked down and saw that pouch, I thought `God, what's the use?' . . . My dad had called Rolf to ask him to shine some light on what we were in for. That's so typical of my father, behind the scenes, finding out from someone who's an expert how we could cope with this as a family."

Benirschke gave Marvin Bush a potent message that he now passes on to other ostomates: "Life is not over. It's just beginning. It's a new life, a pain-free life, free from worrying about where you are going to have to sprint to go to the bathroom next. Free from the embarrassment of losing control of your bodily functions. Free from not knowing what the future is going to hold. Once you've had the surgery. the hard part's over."

Sharing deep emotions with a stranger was "hard for me at first," Bush admits. "I'm not one of those feely-meely type of people, so it was hard for me to open up and have someone else open up like that. And yet, I felt this guy really cared and I thought, `Why's he doing this?' Now I know why-because somebody helped him."

Another turning point came when man stopped by Bush's hospital room and started talking about himself. "He was just a few years older than I, real robust and healthy, telling me how active he was in business and sports," Bush says. "I had no idea what he was doing in my room. Then he said that one of my biggest decision: would be what brand of ostomy to wear, and I said, `How the heck would you know?' He said, `I've got one, too.' That had an amazing impact on me. He dropped his pants and showed me the pouch, and I started asking him very basic questions. The exchange gave me great confidence."

Bush learned that he'd have to empty the pouch several times a day and change it about every four or five days. He'd need to keep supplies accessible and watch out for certain foods, such as peanuts and popcorn which-if not properly chewed-could obstruct the ostomy. The pouch would fit snugly under his trouser and not limit his activities-from sex to sit-ups.

Another boost to Bush's recover came with the news he was about to become a father. Margaret Bush' ovarian cancer had left her unable to bear a child, so the couple had been trying for five years to adopt. Eight days after Marvin Bush's surgery, the agency called to say that the Bushes had been chosen as adoptive parents of a newborn girl.

"I was extraordinarily lucky that Marshall came along and I didn't have time to think about anything else," Bush says. "It was great that she came while I was recuperating and I wasn't able to go back to work right away. I think she'll be shocked when she realizes one day that all men don't have this."

When Marshall and Walker are old enough to understand, Bush says, "I'll be honest with them. I'll say, `Look, I'm lucky to be alive and lucky to be your dad.'"

The experience has made him "a much stronger person," Bush says. "I end not to focus on those minute details that in the larger framework aren't that important, and I try to focus on the things that are important-like my own little family. I moved my office to be closer to my kids, they come here every other day, and I can walk over to my daughter's pre-school where my wife teaches. I no longer agonize over business decisions as much. You do what you can do."

His two current goals are to help other families going through similar experiences and to support CCFA in raising funds to find a cure for inflammatory bowel disease. "I talk to as many people as possible and respond to as many letters as I can," Bush says. "It's very rewarding for me from a selfish standpoint, too. Because it's my belief that the last phase of the recovery process is to help someone else."
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Author:Krucoff, Carol
Publication:Saturday Evening Post
Date:Jul 1, 1991
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