When he first found out he had colorectal cancer and needed an ostomy, Bob Baker expected a rough road ahead. Since then, he’s realized that things aren’t always as bad as they seem.
At 15, Bob was diagnosed with ulcerative colitis, a chronic inflammatory disease of the colon. He spent years with little bowel control, but didn’t want to have his colon removed or get an ostomy. Finally, he had a bout of serious diarrhea and pain, and knowing that irritable bowel disease (colitis or Crohn’s disease) increases the risk of developing colorectal cancer, he got a colonoscopy. Bob was diagnosed with stage II colon cancer, but it took several more years of bowel trouble before he decided to get his colon removed, a decision he says was one of the best he ever made.
Bob’s ostomy continues to give him the freedom to enjoy the rest of his life. Despite his initial concerns, an ostomy offered convenience and control, and now he has a lot to celebrate!
BOB’S STORY AS TOLD BY BOB:
I got ulcerative colitis very suddenly when I was 15, and it was pretty devastating. I was a very active and athletic person, but the disease took the wind out of my sails overnight. I was so sick and my immune system was overrun. I caught every cold and flu around and had bloody diarrhea constantly day and night. I found it really difficult to cope with the colitis. It was physically demanding to be ill like that, but emotionally it was very difficult for me because I was very embarrassed about it and very self-conscious. I kept it in the closet and tried to hide it, which is a horrible thing to do, but I did.
I moved to California when I was in high school. I had missed a lot of school due to this illness and I had to drop back a grade, but I made that up in California. I had to finish high school over the phone through a special program. I tried to go to college but could hardly make it through one class without having to go to the bathroom several times, so I stopped going to college, got a job and went on my way. It was kind of a living hell, but I didn’t know any better.
When I was about 26 I moved back to Connecticut, and by then I had suffered from the disease for 11 years without any kind of treatment. This was before the internet, so I had almost no information either. Soon after I moved back, I ended up in the hospital with severe appendicitis, and the surgeon who did the operation asked if anything else was bothering me. When I mentioned ulcerative colitis, he referred me to a gastroenterologist. That was the first time I started getting care for the colitis.
The interesting part of this all, looking back, is that the doctor who performed the appendectomy ended up being the doctor who performed my cancer surgery and my ostomy surgery. At first I wasn’t sure if I liked him or not, but it ended up that he is the most amazing guy and I was lucky to get him. I had great care and not everyone gets that. It was a blessing for me, but it doesn’t happen that way for everyone.
I have always been the type of person who prefers natural treatments, but I needed some relief and agreed to take Prednisone. Well, it worked somewhat – it allowed me to function better – not normal, but better. I continued to take the drug in a very small dosage for many years, but I went through relapses and remissions three or four times a year. I married, started a building business, and had three children. At one point someone gave me a book about ostomies and I looked it over. I read it out of curiosity but closed it up and promptly gave it back and proclaimed, “No, thank you.” I thought an ostomy just wasn’t for me. I had ulcerative colitis for a total of 27 years, and I tried to act normal and healthy, but I had a secret. I was very ill. I became the master of excuses. I missed out on much of life due to uncontrollable diarrhea.
I knew I was at high risk to get colon cancer, but I tried to put it out of my mind. I’m a positive person and I just didn’t want to go there. I did get colonoscopies every five years or so as my doctors recommended them. By age 40 I felt particularly sick and had difficulty working, and I knew something was wrong. At that time I was feeling the worst I had ever felt. I had low energy and was under a lot of stress, and I had to really run to the bathroom several times a day. I had dreams about it, I had thoughts about it, and one day I finally found the courage to call my doctor and say, “I think something’s wrong.”
He had me come right in for a colonoscopy, and he found a tumor about the size of a golf ball. It was right before Christmas and I had to wait for the holidays to get the surgery. I didn’t tell anyone at first; I just went. My surgeon gave me the option to have a partial colectomy or have my entire colon removed. Well, I was not prepared to do “the unthinkable,” so I chose the partial removal. It saved my life, but my life was still compromised by colitis.
I had colitis about 25 years when I got cancer, and it was a very emotional time. My daughter was only a year and a half old and my sons were young. I was diagnosed in December of 2000, and I recovered well. When the doctor did the surgery he felt that he had gotten it all, and the pathology results came back and it had not spread to the lymph nodes. Because I had no insurance, he kind of weighed that in with the data to come to the conclusion that I didn’t need to do additional therapies. I readily accepted that and felt very confident about it. The recovery from surgery was rapid and my colitis was at bay.
A year and a half later, the colitis came back with a vengeance and was worse than ever. I had to take such high doses of Prednisone that I was worried about it. My family needed me to work because I was the sole provider, and one morning I woke up and just decided that my colon had to come out. It was probably the worst financial time in my life, but my wife and I sat down at the kitchen table and decided that being healthy was more important, so I decided to do it.
It is hard to describe what made me decide to get the ostomy because that tests the depths of my faith, which is very deep. Literally the thought of getting an ostomy had been unthinkable. I had compartmentalized it out of my brain, and I literally never thought of it. But this one particular day, I woke up with it fresh on my mind, as a way out and as the way to go, and I listened to it. It was right, and I knew it. I called an aunt who was a nurse and discussed it. She was so helpful to me in making the decision, and it turns out that my uncle had an ostomy and it had helped him.
That same day, I called my doctor and he said, “This is a good decision.” I had him schedule it as soon as possible, but it took three weeks or maybe longer. I would have done it that afternoon; I swear I would have done it immediately. I started going on the internet and looking at pictures of ostomies and I got on the Great Comeback Awards website and read about Rolf Benirschke, a former professional football player who played with an ostomy. He had colitis and had the surgery, and he went back to play another six or seven years and break all kinds of records. I told my wife, “If this guy can do it, I’ll be fine.” I didn’t understand the full implication of what it would be like, but I just had to do it. I just trusted that decision was the right one to make, and it was.
I got the ostomy surgery, and other than having children, it was probably the best thing I’ve done in my life. I mean it. I’m in control now. I’m relaxed, more confident and more active. It was also the hardest thing. But it has given me my health, my freedom and it has given me purpose. It has become my passion. A chronic illness is a very insidious thing. I was sick for 27 years, and I literally forgot what it was like to feel well. In fact, I feel like I’m still learning how to be well again. It’s a lot of fun and I’m having a good time doing it and now it’s like every day is amazing to me. Just doing simple chores is a lot of fun.
My family missed out on a lot of me because I had colitis and couldn’t participate, so it was kind of normal for me not to be there. When I got my ostomy, all of a sudden I was there and willing and able to do things with them, and they were thrilled. Six days after I got out of the hospital, I started playing ping-pong and it actually got me in shape for starting to ski, ride bikes again and do other things.
The love that my family showed me – really helped me – accept my ostomy and see it through their eyes. They didn’t care about the bag; they had me back. When she was three, my daughter would ask me, “So Dad, how’s your bag today?” She didn’t really understand; it’s only been in the last year that she has asked what was in there. She has been sweet about it, and I’ve gotten a lot of strength back, so now I can wrestle around and throw her in the air. That’s what I like, the intimacy.
Right after surgery, I joined the United Ostomy Association. Their website helped me learn all about ostomy management and is a great resource. Shortly after, my wife, Diane, and I attended our first national conference in Louisville KY. To my knowledge I had never met anyone with an ostomy, so I was very curious to see what I might see. We saw hundreds of people with ostomies and I couldn’t see a single ostomy bag – it was great to see all these people there, dancing, eating and just having fun. This was the first trip my wife Diane and I had been on without colitis. It was great.
I also joined a support group and got really involved, and eventually got elected President. I’m really proud that I get to help people locally. I think it’s really important to talk to people one-on-one as well as working on bigger projects. I’ve been visiting people in nursing homes and in hospitals, and that’s good. I like it. If I can make an impact that way, I’d be happy.
You have to be careful what you ask for in life because oftentimes you’ll get it – and this is the case with the Colondar. I rode in a benefit bike ride in June 2006 called Get your Guts in Gear (benefiting The Colon Club along with The Crohn’s and Colitis foundation, United Ostomy Associations of America and the IBD Quilt Project). It was through Judy Pacitti of Get Your Guts in Gear that I got in touch with The Colon Club. It just so happened that last year I had dinner with Judy at another UOA conference in California and asked her if she knew of anything I could do because I wanted to be involved but I hadn’t found my place yet. Judy suggested that I apply for the Colondar, and I did.
There’s a reason for everything, and I understand that. It makes it all worth it if I can help somebody else, and it’s not all been for naught. It’s a mission I’m on and I’ve overcome my embarrassment. I wouldn’t be the person I am today if it weren’t for my disease, and it’s made me a far better person.
Congratulations to Bob who won the Comeback Award!!!