Thirty Years

During the past week and a half I've dealt with a case of pouchitis, which is what us folks who don't have a colon sometimes face instead of ulcerative colitis. Those 2 illnesses, colitis and pouchitis, tend to be very similar to each other. I admit that I've had a few flashbacks to some darker periods in my life. This recent bout with IBD didn't lead to this post but it has made it seem more emotional and important, at least in my own mind....

I didn't used to be super public about the fact that I had ulcerative colitis or that I subsequently had surgery that removed my large intestine. Sure I've shared my story many times but usually I've felt a little embarrassed because, while there have been some very hard times related to the disease, the surgery, and the recovery, that also did not mean to me that I was somehow 'special'. And to be truthful, it also didn't help that I felt uncomfortable talking about poop, and colons, and blood, and diarrhea (farts were a different story). I don't view myself as anywhere close to being on the level of say a challenge athlete with an amputated limb or a cancer survivor in what I've supposedly overcome.

As a triathlete and most especially as a Team Challenge triathlon coach for the Crohn's and Colitis Foundation of America (CCFA) I've learned over time that sharing the fact that I've had UC, that I have no colon, and that I still have intestinal bowel disease (IBD) is worthwhile for others to hear. I don't share my story or history for sympathy, or to impress people, or to "brag" - Look at ME! I've done 8 Ironmans without a colon. The reason I share is to help those who have Crohn's or colitis, or those who have a child (or even a friend) with one of those diseases, to be inspired, to have hope, and to believe that IBD, while often pretty horrible, is also sometimes pretty manageable; to understand that some semblance of a "normal" life is possible for many and to not give up hope.

Why am I writing this today? THIRTY years ago, on June 20, 1986, I had the first of a two-step surgery to remove my large intestine and construct a reservoir out of the end of my small intestine - an illeoanal proctocolectomy. 30 years ago the treatment options were far more limited - flagyl, sulfasalazine, prednisone, one somewhat useful antibiotic, "bowel rest", and surgery. That was pretty much it for ulcerative colitis. (The options for Crohn's were even fewer!) 30 years ago, two weeks after the birth of my first child, I went under the knife of a young, excellent surgeon, Dr Dana Launer, who would do the first J-pouch surgery in San Diego after he had traveled to Sweden to learn the new procedure. 30 years ago? That means I've lived longer WITHOUT my colon than with it. I was 29 years old at the time of that first surgery. It was devastating for my family and for me. But it was the best option available at the time.

Baby Marc visiting me in the hospital

A few days after Marc was born I had a colonoscopy scheduled as an out patient and the doctor was going to use a teaching scope so that I could also see what things looked like in there (general anesthesia wasn't used then I guess). My health had rallied for the days around Linda giving birth but now I was so bad off that I didn't have the energy to even look at or care what the doctor was doing or seeing. The bowel prep itself practically wiped me out. The result of the colonoscopy was the doc wanting to admit me to the hospital right then and there. Because I felt so bad I did not argue or put up a fight, even though this left my wife to now, somehow, hold our lives together. At first they put me on the oncology floor of the hospital because that was the bed that was available. They immediately started giving me a blood transfusion (I was 3 pints low), lipids, and glucose or whatever through an IV. Unfortunately, putting me in the oncology unit freaked Linda out even more because she thought there must be something they weren't telling her. My parents, Jayne and Hank, were also devastated but were there to support both Linda and Marc, and me. The other family members and the friends that were able to visit me were supportive but very concerned.

Linda, Marc, and me at Scripps Memorial (La Jolla)

During the next few days Linda put our baby into a 'snuggly', went to the UCSD medical library, got unhappy looks from med students studying for exams, and poured nickels into the photocopy machine to copy the research on surgical options (remember, no internet or pubmed websites back then!) so that we could make an informed decision. It took the rest of the week to make the decision to have surgery. Finally I decided to have the surgery, at least in part because of the

Images via John Hopkins Colon Cancer Center

concern/risk of colon cancer. The 1st surgery took 6 1/2 hours and included a 10" long incision through my abdominal muscles and a stoma hole for me to be able to poop into an illeostomy bag. I was in the hospital for 21 days altogether. And this didn't including the 6 weeks I spent on bowel rest earlier that year or the 10 days required 3+ months later for the 2nd part of the surgery. In between the first and 2nd surgery I returned to work as best I could. I also did my best to reclaim some part of my old self by training for and swimming the 1 mile La Jolla Rough Water Swim. It turned out to be the slowest, hardest, and best, open water swim of my life. That year, 1986, the little "survivor medal" they gave out to finishers was far more meaningful and prized by me than it had ever been.

Depression, ongoing bowel issues, and adjustments to life followed for many years. I did not adapt well. I'm sure that being pretty inflexible and being slow to letting things go, adapt, and move forward didn't help! The depression eventually even included suicidal thoughts but with a lot of help, psychotherapy, and the unfathomable patience of Linda, I have gotten to where I am now, 30 years on. It was a hard road for a very long time but things gradually got better. Don't be fooled by how I am today: it wasn't easy - it was very hard work. All of this is sometimes hard for us to believe. We wonder how we survived it all, stayed together, continue to love each other, and how we now can't imagine being without each other.

That's the story of my ulcerative colitis and surgery. Even though what's written here is long, trust me when I say you got the abbreviated version!

Let me end by saying that, no, not everyone can be as fortunate as I am in being able to manage IBD and get through the treatment and all that's involved. But if I can show someone who is feeling depressed, or lost, or hopeless, that there are possibilities for a better future, to be inspired about possibilities, then that is a so very small price to pay for being a little less private about myself and sometimes a little uncomfortable about sharing my own IBD story or issues.

Thirty years... imagine that!