December 2007

Bob & Melissa’s Colondar Bio:

December 2007 – Celebrate!

Bob Baker | Washington Depot, CT | Diagnosed at 40 | Survivor since 2000
Melissa Stahl | S. Williamsport, PA | Diagnosed at 21 | Survivor since 1989

When they first found out they had colorectal cancer and needed ostomies, both Melissa Stahl and Bob Baker expected a rough road ahead. Since then, they’ve realized that things aren’t always as bad as they seem.

In college, Melissa had rectal bleeding, fatigue, changes in her bowel habits, and lower back pain. She finally saw a gastroenterologist who gave her a sigmoidoscopy and found a cancerous mass that required surgery. Melissa woke up with an ostomy and was diagnosed with stage III rectal cancer. She thought the ostomy would ruin her life, but found that it didn’t change things as much as she thought it would.

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.

Melissa hopes to have her ostomy reversed soon, and Bob’s continues to give him the freedom to enjoy the rest of his life. Despite their initial concerns, ostomies offered convenience and control, and now they have 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!!!

Melissa’s Story as told by Melissa

My story starts in February, 1989.  My life was pretty good so far, up to that point.  I was 20 years old, in college and enjoying life.   The first recollection I have of a problem was when I noticed some spotting of blood when I’d go to the bathroom.   It wasn’t enough to send me to the doctor, but it was noticeable.  Like most people (especially young people), I shrugged it off as nothing.  Over the next few months, I became easily fatigued, noticed greater amounts of blood, and just didn’t feel myself.   I also started to experience a pain low in my back.    I couldn’t imagine it was anything serious but when I look back I realize my body was sending me all kinds of signals.  I just didn’t listen.  By the time the semester was over in May, I was bleeding quite a bit and my bowel movements weren’t normal.

Shortly after my 21st birthday in June, we traveled to California for a family reunion. I was miserable the entire trip.  The bleeding, fatigue and pain got worse.  I hadn’t told my parents about any of this because I really didn’t know what to think.  I wasn’t going to the bathroom or eating normally, but in my mind I thought it must just be the stress of school and working two jobs during the summer.  I was looking forward to the family vacation.  I was sure that I’d be able to relax, have a good time and the symptoms would stop.  I’d be normal again.

That didn’t happen.  In fact, it got worse. The symptoms got progressively worse and I realized something needed to be done.  I told my grandfather, a retired physician, about my concerns.  I didn’t want to tell my parents in case it was nothing serious.  He was pretty concerned and called a gastroenterologist who said he’d see me that afternoon. The doctor used a flexible sigmoidoscope to find “it.” The polyp was low in my rectum.  I was told that because I was young, healthy and followed a pretty good diet, the chances of me having colorectal cancer were very low but he would biopsy it anyway.

The phone call came a few days later saying that I had stage III rectal cancer.  After we got over the initial shock, my family rallied behind me and we came up with a plan of action.  I was given so much information, advice and support.  When I look back on the events that followed, I realize how great my family was and continues to be.   I knew then the value of a good family.  And if there’s anything I’ve learned through all this, it’s to ask a lot of questions and get a second opinion, especially on treatment options.  The first doctor I saw wanted to shrink the tumor with radiation and chemo followed by surgery.  The second opinion was to do surgery followed by radiation and chemo.  I decided on the second option.  My doctors answered a lot of the questions my family and I had.  I wanted the cancer out of me and I had a good feeling about the surgeon.  For me it just felt right.  Turns out, it was the right decision. I had the surgery at LDS Hospital in Salt Lake City on July 6, 1989.  I also had chemotherapy with 5-FU along with radiation therapy.  I feel blessed to have had a group of doctors and nurses that were truly a “team” with me and my family.  The treatment plan was aggressive for that day and for someone my age.  However, because of the aggressiveness of the treatments, I have dealt with some things most women my age don’t worry about.  I went through surgical menopause.  I’ve been through hormone replacement therapy.  I get screened for osteoporosis.  I’ve dealt with infertility.  And I’m not even 40!  On a bright note, my husband and I are in the process of adopting a baby!

One of the main concerns before my surgery was that the tumor was very low in my rectum. The doctors weren’t sure that they would be able to save the rectum and a colostomy was a real possibility.  A colostomy?!  I knew that people who went through cancer treatments had the potential to lose hair or get thin, but the idea of a colostomy really threw me.  Part of my apprehension was pure ignorance.  Part of it was that I was 21 and in college.  I just wanted to be normal and fit in.  I didn’t know anyone with a colostomy.  I kept thinking, “How can I function as a normal 21 year-old with a colostomy?  How drastically is this going to change my life?”

After surgery, the first thing I did was look down to see if I had a colostomy.  I did.  And I cried.  But I also learned that it was not “the end of the world” as I had imagined.  My surgeon assured me it was probably a temporary thing and that someday they would be able to reverse it.  Strange enough, I had an easier time accepting the cancer than I did accepting the colostomy.  At the time, the American Cancer Society was a great resource for me.  They sent a volunteer to visit me and answer any questions about my colostomy and colorectal cancer.  She was a lovely woman in her late-60’s who had grandchildren.  Although helpful in ways, I kept asking myself, “How could she help with the concerns and questions of a 21 year-old?”  I had great support from family and friends, however I felt alone in a way.  As far as I knew, there was nobody else out there who could understand what I was going through.  And even if there were, how would I have found them in the pre-internet era?  I think one of best things about The Colon Club is that it gives people dealing with these issues a forum to discuss, ask and learn about any aspect of this disease.  What I would have given for such a resource when I was going through it all!  Thanks Colon Club!

Looking back I realize that many of my concerns were truly unwarranted.   I thought a colostomy would keep me from doing a lot of things.  Fortunately, I found out that it didn’t change much at all – my diet was pretty much the same, I could ski and swim, and I could still travel, although I just needed to pack a few more things.  I thought a colostomy would have an odor people would notice.  I found out that the pouches have odor barriers and very rarely was odor an issue.  I thought everyone would be able to tell I had a colostomy.  I found out many people had no idea I had one.  In fact, there were many people I met after my surgery and knew for years, who didn’t even know I had a colostomy.   The main thing I realized was that having a colostomy didn’t change who I was.  And I intended to live my life as planned.

After 12 years with the colostomy, I successfully had it reversed in 2001 at the Milton S. Hershey Medical Center in Hershey, PA.  I had so much scarring from the radiation that I had to wait a little longer than originally thought.  It wasn’t an easy process (two surgeries and many tests) but once again, I had a great team of doctors and nurses that I trusted and respected.  I can truly say that if I had not been able to have it reversed, I would have been able to continue living a fulfilling life with my colostomy.

Although I was doing well for years after the reconnection, I had surgery to repair a perforation in my bowel in December, 2005.  In order to allow the area to heal, I was given a temporary ileostomy. Yes, it’s a minor setback but I am otherwise healthy and happy.  I’m hoping to have the ileostomy reversed in the near future.   The bottom line is that I have not stopped living because of an ostomy.  Life is, after all, what you make of it.  The rest of my story is pretty simple.  I get yearly blood work, yearly digital rectal exams and a colonoscopy every three years.  It’s been 17 years since my surgery and every year that passes, I feel truly blessed.  In fact, every year on July 6th, I have a little “celebration.”  Nothing big… it’s just a great time to remind myself how fortunate I am to have my health, a wonderful family and friends that are so supportive. While I would never wish this on anyone, I realize how much this experience helped me learn about myself, my priorities in life and those around me – and for that I am grateful.  I actually consider myself to be a very lucky girl.