Colonless – young cancer survivor – guest post

colonless

We last heard from Reagan Barnett a couple of years ago.  She has a new blog now that focuses on colon cancer, genetic cancer syndromes, and young adult cancer issues. In the world of cancer blogging, colon survivors probably don’t get their due.  Cancer blogs mirror incidence of a particular cancer but not always.  Aggressive cancers are underrepresented sometimes.  Genetic cancer syndromes such as Lynch’s are probably more so.  Reagan is a sparkling voice for young adult survivors.  Her new blog is called When My Genes Don’t Fit | Living With a Genetic Cancer Syndrome

Colonless

I remember standing in front of the hotel mirror at 5:00am on the morning of August 6, 2008. I held my shirt up and traced my fingers over my belly button for the last time. It was the last time my abdomen would ever look like that. The last time I would ever see the belly button I was born with. I would never again wear a bikini or change in a locker room with out being acutely aware that I am different. And on that morning it hardly mattered, though I knew later it would. Because the other thing on my mind was that on the other side of my skin, behind that belly button, was a tumor the size of an apple core. And that tumor had been robbing me of the chance at a healthy life. It had secretly run my life for the past 5 years, but now I knew it was there. And that morning was the morning that it was going to be removed. I had a 7:00am surgery scheduled with my doctor at Johns Hopkins, and I was both terrified and eager.

Before that day in 2008 I had never had surgery before… not for wisdom teeth, tonsils, nothing. Now, as of 2013, I have had 4 major abdominal surgeries and 1 lung surgery and countless hospital visits. Since my colon cancer was hereditary we decided to not only remove the tumor located in my sigmoid colon, but perform prophylactic surgery as well and remove the entire colon. They removed part of my ileum (small intestine) all the way down to part of my rectum (they left about 3 inches). So my anatomy looks similar to this now:

ileorectal anastamosis

 

I’ll admit, I wasn’t prepared for what life without a colon meant. But how can you be really? There are things I deal with now that are hard to explain to someone who hasn’t been there. The random pains, the instant full feeling followed by instant hunger, how I can literally feel food moving through my body. It’s strange. But living colonless is actually not nearly as bad as they told me it would be. My doctor told me that I could be visiting the restroom anywhere from 15-30 times a day. That’s alot! Everybody is different, but I stay around 6-10 times a day, which is very manageable. I was told I would lose a lot of weight and have a hard time gaining weight… as a woman I must admit this did not sound like bad news. In fact, I was thinking this would be one major positive outcome of my diagnosis. And it might have been, had that  been the case. However, I have constantly gained weight and have no clue why. One of the big mysteries I’d like to find the answer to.

But like I said, things are not bad. While I try to be healthy with my diet choices, I can actually eat anything I want, which is something I could not do before my cancer was removed. I can eat pizza, fried foods, pasta, etc with very little consequences. Some things cause more problems than others, but that is something I have learned and try to steer my diet in the direction that I can handle. The only thing that is really hard for me to eat is salad… go figure.

I also take zero prescription medications. The only real prescription I have gotten since surgery is for Vitamin B12 shots, but to me that is a supplement, not a drug. I do try to take necessary supplements (such as Vitamin D, which I am very low in) but lots of people do that.

I have zero regret about choosing to remove my colon. I have less worry that I will have a recurrence or a second colon cancer and the side effects are nothing compared to having cancer. I am very supportive of prophylactic surgery in the case of hereditary cancer syndromes if cancer is found, especially when you have a doctor that will help you transition into your new life. You can survive and thrive even without your colon. I kayak, hike, camp, paint, garden… I have very few physical limitations and I thoroughly enjoy my life… and so can you! Whether you have colon cancer, Lynch Syndrome, FAP, ulcerative colitis, etc… don’t fear life without your colon… it just might set you free.

from: When My Genes Don’t Fit | Living With a Genetic Cancer Syndrome

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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