The Colostomy Conundrum – Part 3
by Belle Piazza
February 14, 2011 was by far, one of the best days of my entire life. Not because it was Valentines Day but because that was the day I received a phone call from Erika Kratzer from The Colon Club, informing me that I had been selected as one of the 2012 Colondar Models. I was beside myself with joy. I couldn’t believe my luck. If I had a bucket list, this would have been the number one item on it – a real dream come true for me. A trip cross country to spend a weekend at a photo shoot in Upstate New York would be a challenge for me but since I knew I’d be surrounded by a houseful of people with similar bathroom issues, I knew I could do it. I had to do it – nothing – not cancer – not bathroom issues – nothing was going to stop me from being a part of this amazing project. This group, I knew, would understand.
At the photo shoot I met many, many wonderful, kind and inspirational people. Each had a story. I instantly loved everyone I met and found that I really didn’t want to hear about their cancer stories, it hurt too much. I wanted these people to all be healthy and happy and cancer free. And for that weekend, we were. Two of the other models, Staci and Melissa, had permanent colostomies. They didn’t have a choice – the choice was made for them – if you want to live, you have to have a permanent colostomy. Neither one so much as blinked an eye – “do it” they said. Not only did I blink an eye or two I literally came unhinged and balled like a baby when I was first told I’d have to have an ostomy. Wow, I thought, what strength these women had. But more than just inner strength, they had a peace and a life force about them that I was lacking. Melissa was a college student with a passion for horses. Staci was a young mother of 3, active in her church, family and community. Both were doing one thing I wasn’t able to do – that one thing being anything they wanted to whenever they wanted to do it. The wheels in my mind started to turn.
When I returned from the photo shoot I met with a friend of mine whose background is in Psychology. I try hard to not use her as my own personal shrink and I think I do a pretty good job of it, but suffice it to say that when I have a problem, she is a very effective friend to have around! We talked about the Colondar weekend and how crazy it sounded that I hooked up with this group of total strangers on line, that they flew me into a small airport, where I was picked up in a limo by total strangers to be taken 2 ½ hours away to a remote part of Upstate New York where I’d stay in a house owned by people I didn’t know and spent the entire weekend with a large group of people I’d never met. I laughed as I told my friend Maria about all of this and then said “this is SO me – I’ve ALWAYS done this type of crazy stuff”. I used to have an old Nike ad that I’d pulled from a fitness magazine that said “Just Do It” taped to my refrigerator door. This was my mantra. And that’s when it hit me. That’s when the light bulb lit up over my head. That’s when it all became so perfectly and painfully clear. I had lived my entire life doing whatever passion struck me. It didn’t matter if it was what other people did and it didn’t matter what other people thought. I had done many things in my life – and had mastered few. But I always had fun and I was always up for a new experience or challenge. I never let anything or anyone slow me down or discourage me from doing what I wanted to do. Until now.
I suddenly realized that my bathroom issues were drastically compromising my quality of life and limiting my life experiences. I realized that for whatever reason, my bathroom issues were not going to improve. I’d tried everything I could possibly think of, including allowance for time, and this was as good as things were going to get. And things were NOT good. It was time to take this to the next level. It was time to call my surgeon and ask for a permanent colostomy.
There were many things that caused me to delay this decision for so long. One of the first deterrents was my hesitation to subject myself to another ‘big’ surgery. I had asked my surgeon previously about the possibility of a permanent colostomy and she said it would involve another cut me down the middle, ‘big’ surgery. The thought of that was so overwhelming, I pushed the thought to a back corner of my mind. There was the feeling that other people could make this work so theoretically, I should be able to make my new plumbing work too. If not, then I had failed. I was a failure. There were the days when things weren’t too terribly bad; though days like that were few and far between. On good days, or semi-good days, I enjoyed not having to deal with the bag and all it involved. And although I knew I could be happy with a colostomy as I’d lived with an ileostomy for a full year, the mental and emotional adjustment to find that happy place again was one I didn’t want to have to go through again. If I could have waved my magic wand and awoken one morning with a colostomy, without the painful recovery of surgery and without the mental/emotional adjustment phase, I would have done it in a heart beat. I just didn’t want to do the work to get there.
And so it was set. August 2011 – almost 2 months after The Colondar photo shoot, my surgery date for a permament colostomy was set. The weeks leading up to the reversal were brutal. I had started keeping a log of how frequently I was using the bathroom and realized a bad day was in excess of 20 times a day. A good day was 10 or less trips. This was complete insanity and to see it right there in front of me in black and white was the reality check I needed to illustrate as much. I knew I had to do this.
Waking up in the recovery room in my post surgery haze, the first thought that entered my mind was “Yes! It’s over, no more pain, no more pain” I was so happy. Instead of an open me up down the middle surgery, my surgeon was able to do the entire procedure laproscopically. This meant a huge difference in recovery time. Within 2 weeks I was able to perform most of my daily functions, being careful not to lift too much. The adjustment phase I anticipated was non-existent. I tell people now that once you have cared for and lived with an ostomy, it’s like riding a bike, it’s something you just don’t forget – you pick right up where you left off.
I met with Natalie a few times to ensure that I had the right products with the right size openings to fit my ostomy as the ostomy healed and shrank down to a smaller size. It was like meeting with an old friend. I told Natalie about The Colondar and she was thrilled for me.
In summary, and in short, I have my life back. It’s been tweaked and modified and at times stomped on when I was down, but I have my life back. And now, with my permanent colostomy, life is more on my terms than on the terms of my colon. This was not an easy or a quick decision. It was the right decision for me at the right time. It did not come quickly or easily. As colo-rectal cancer survivors there is simply no one size fits all answer to our bathroom problems. For some, an ostomy is the answer – whether we make that choice or a surgeon makes it for us. For some, reversal surgeries can be managed adequately to enable a person to live in harmony with their new plumbing. For others, despite failing reversal surgeries, an ostomy will never be an option. There is no right, no wrong, no judgment. As survivors we are forced to make many difficult life changing decisions. As much as we want it to all go away, our battle scars are with us forever. Sometimes silent, sometimes coming at us with both guns ablazing. All we can do is gather together, compare our war stories, what works for us, what doesn’t; to share information and support. Through it all I have found the greatest source of information on ostomies, reversals and managing our new plumbing right here at The Colon Club. From the people who have been through it and who live with it every day of their lives. To those here who have supported me through it all, the good, the bad, the ugly and the down right deep, dark, really ugly times, I thank you. And now, I’m off to do…..whatever I happen to feel like today…..because I can!
