Starting a family with an ostomy
When you are 33 years old and the GI doctor says you need to have your whole colon removed, your perspective on life, and many other things, changes. My mind wanders, trying to imagine all the implications of this surgery. Wait, the doctor just said something about an ileostomy bag. What is an ostomy? What does this mean and how will it affect my life and my future?
Living with Ulcerative Colitis was one of the greatest challenges I have ever endured. It started one day in November 1998, out of the blue, with blood in the toilet. After the second day with the same symptoms, I knew something was really wrong and scheduled a doctor’s appointment. I was wondering how I could have developed Ulcerative Colitis considering how healthy I was at the time. I was a Junior in college, on a golf scholarship with a very competitive and top ranked team. I ran 8-10 miles per week and lifted weights when I was not playing golf. I was in the best shape of my life.
Looking back, I don’t remember too much about the years I spent suffering from Ulcerative Colitis from 1998 to 2009. All I remember is working and then coming home and collapsing from exhaustion. I learned to live with Ulcerative Colitis and I found out that I felt best when I didn’t have unnecessary stress in my life. Stress causes flare ups. It didn’t take too long before I truly stopped worrying about things I could not control. I managed to be independent, have a little bit of a social life, worked hard and earned a decent income. However, my quality of life was diminished during what should have been the prime years of my life. More than 10 years had gone by, with no improvements and the risk for other diseases, such as cancer, had increased.
During that fateful doctor visit, my GI doctor tells me that an ileostomy will eliminate the high risk of colon cancer and assures me that I will actually feel better than I have the past 11 years with moderate to severe Ulcerative Colitis. It sounds logical to me: remove what hurts and I should feel better. I was actually pretty calm during this discussion with my GI doctor, mainly because I was so curious about this surgery. I go back to my car, it’s my lunch break from work, and I am not sure what to do next. I say a prayer, then call my parents to tell them the unexpected news and I become overwhelmed with emotion. My inner strength and personal drive can no longer hold this weight. A moment later, I snap out of it. I keep telling my Dad, and myself, “If I remove my colon, I will feel better.” Maybe, just maybe, I will get my life back. My Dad, stoic as ever, keeps telling me, “‘We’ will get through this.” There is no doubt.
I wake up from surgery (2009) and immediately feel better. I was free! Sure, I just had major surgery and the morphine is flowing. But for some reason I could tell that I felt a lot better not having that constant infection within me. I knew I was going to get my life back, I just wasn’t sure how yet.
Eventually, I see the ostomy bag they attached to me. Did it have to be a clear bag? “Yes” the nurse says, “we need to see what’s going on.” Ok, that makes sense. The nurse is pretty cute and I try to keep the conversation going, cracking jokes. Eventually she had to leave. I start to wonder for the first time, will I ever have a chance of dating again someday? Who wants to date a guy with a ostomy bag attached? The odds seemed really slim at the time. Leading a normal life with the goal of marrying and having children seemed like a long, long way off.
It took 2 months to heal from the surgery. However, I was advised to wait a total of 3 months before going back to work. Walking was the best exercise and I walked nearly every day. Whether it was down the hall and back the day after surgery or around the block several times as I was getting ready to head back to work. Getting the strength and stamina to work physically demanding, long days takes time. I knew I had to be patient to avoid injury.
One of the biggest everyday challenges was wearing pants with a belt and using a seatbelt in a vehicle. I felt vulnerable and needed protection for my stoma and a way to allow for drainage of the bag underneath the pants and seat belt. That was annoying. So I purchased a heavy duty stoma guard at the time and though I was glad to have it, I found myself constantly thinking of ways to improve the design and creating a wishlist of features.
Not long after that, I handmade my own stoma guard with a unique, ergonomic design that incorporated all the features that I felt were useful and necessary. It was lightweight, discreet, metal-free, adjustable, and allowed me to move and sit with ease without inhibiting drainage. I was comfortable, able to wear normal clothing and a seat belt, and felt confident. Eventually, I started my own company during my spare time, called StomaGear. We manufacture a high quality version of the original design and call it the StomaShield. Now we sell the StomaShield all over the world. My favorite part is getting testimonials from satisfied customers telling me how the StomaShield helped them get their life back to normal with an ostomy.
In my first year after surgery, I was starting to feel really good. I was healthy, working, and was able to experience life with newfound energy and enthusiasm. If only I had someone to share it with. I began dating and the first couple tries didn’t go well. Then I met Rebecka. She was level headed, had a great attitude about life, and we had a lot of common interests. We hit it off in conversation and we would easily talk for hours. Although I was nervous about her reaction, I knew I had to be upfront and honest, about having an ostomy. No need to prolong the inevitable. She listened, asked lots of questions, and was just generally curious. What a relief to realize that she saw a lot more to me than the ostomy bag. My wife Rebecka says, “He didn’t make a big deal out of having an ostomy, so it wasn’t. For him having an ostomy meant feeling better and regaining his freedom. For me it meant he had a few dietary restrictions and he used the restroom a little differently. Not such a big deal. I never pitied him and he never pitied himself. Quite the opposite actually, I admire him and am inspired by him. Life is full of challenges and it’s how you deal with them that makes all of the difference. I wanted to be with a man that knew how to face a challenge and come out with a positive attitude and a determination to move beyond life’s obstacles.”
Telling the woman you love about your ostomy is one thing, telling everyone else is another. Who do you tell at work? What do you tell random people you are introduced to? All of this worried me at first. But it didn’t take too long to notice that no one noticed I had an ileostomy bag under my clothes. So I learned to move on, not worry about my stoma or bag, and not worry what other people thought. I told my wife’s family and many new friends and discovered that people tended to react with curiosity, sympathy, and admiration. Not what I had expected. I realized that the stigma I faced was in my mind, not in reality. So, the real key to adjusting to life with an ostomy was getting over it myself!
At this point the biggest obstacle to our relationship was distance. She lived near Houston and I lived near Dallas at the time. The company I worked for was large and had offices in Houston as well, so I asked around to find out if they had any openings there. They didn’t at the time, but in a few months there might be. That’s ok, I was in no hurry. Eventually, I got a job in Houston, paid relocation, a promotion, and lived much closer to this amazing woman.
Fortunately, everything worked out for us. We got engaged and saved up for more than a year before wedding at a small ceremony and going on our honeymoon.
We enjoyed life to our fullest. We went camping, hiking, canoeing, snorkeling, and zip lining. I started playing golf again for fun with my family and friends. We also enjoy being an aunt and uncle to two rowdy boys. Since we were both in our mid to late 30’s, it wasn’t too long before we began considering starting our own family. A little more than two years after we married, Rebecka gave birth to beautiful, healthy baby in 2014. Our daughter lights up our lives. A little more than four years later (2019) our son was born. Let me tell you from experience: the StomaShield is REQUIRED when around little rambunctious kids!
It’s amazing to look back over the last 10+ years and how my life with an ostomy has transpired. To find that special someone, I found that it takes courage, confidence and persistence, regardless if you have an ostomy or not. Coming from rock bottom to having a great job, a satisfying business, and a beautiful wife, daughter and son, I can truly say that anything is possible after life with an ostomy. Even starting a family.