For Ostomates Science and Sensibility Make for the Best in Support
We ostomates see a lot of doctors over time. I guess you’d say that’s where you’d say our support system begins. With doctors, particularly GI’s (gastroenterologists). The right GI helps us through our medical challenges before ostomy surgery and beyond. I say right because I realized early on how important it was to have a GI who understood what I was going through physically and emotionally. When a physician has empathy, it shows. They listen and take you and the symptoms you’re describing seriously. Ultimately, that empathy combines with your recognition of their knowledge and builds trust.
One thing though. I’ve learned that not every GI is going to have experience with every aspect of conditions related to the stomach. While some may be used to treating more common problems with less severe outcomes, others focus on more advanced cases and may specialize in one or other of the more complex conditions. That’s why seeing several doctors and getting second and third opinions are important. Each specialist has a point of view. We learn more with each visit. This contributes a comfort level that leads to better decision-making, a strong patient-doctor relationship, and, I believe anyway, a more positive adjustment post-surgery.
Science and Sensibility
Progressively severe symptoms inevitably get you to a surgeon. I’ve had five surgeries. Two were done within a week of each other. The final was my ostomy surgery. How your surgeon relates to you makes all the difference in your go/no-go decision. Even though the promise is that your life will get better, the aftermath looms as a life-altering consideration. That said, pre-surgery conversations and the trust that results are important.
Looking back, I find it ironic that with all the problems I was having, the idea of ostomy surgery was at most a foggy thought. I never regarded surgery as the final solution that would stop my symptoms. It was only after I was in the hospital for 30 days 11/2 years ago and experiencing one complication after another that I faced the option—make that the necessity—of ostomy surgery. My pre-surgery conversation was right before my surgery. Though this is not optimal, it fortunately worked out well for me.
The surgeon came in and sat down to have a face-to-face about my reality: I was only going home if I had THE surgery. There was something about the way the surgeon explained it. There was also the amazing coincidence that at one time he’d had ostomy surgery. It had now been reversed. The combination made me trust him. Instantly. He was direct, yet empathetic, and I felt his support. With very little lead time, I said yes . What’s more, he and his team managed the surgery prep in pre-op and the operating room so efficiently and energetically that I felt nothing less than absolute confidence. In a weird way, I found their mastery exhilarating.
It’s fair to say, that during that 30-day stay that ended in my ostomy, I felt my GI and my surgeon had my back. The nurses did, too. Often, they would be the conduits who flagged my doctors when we had questions. In fact, it was my surgeon and GI who championed my discharge. I almost didn’t get to go home from the hospital as soon as I did. The hospital staff felt I wasn’t ready, but my docs weighed in.
Those relationships made a difference and developing them in intense medical situations is imperative. You keep looking till you find and put together a medical team that not only knows the science but presents with the personality and character that clicks with you. As we’re hearing repeatedly these days, following the science is necessary. So is putting yourself in the hands of people you trust.
Advocates, Questioners, Communicators, Outside-the-Box Thinkers
When you’re in the hospital a lot, you realize how important it is to have people other than your treating doctors in your corner. These folks ask the right questions, communicate clearly and demand clear communication from others, namely, the medical staff who’s caring for you. I had two primary champions: my mom, who’s a nurse and works at one of the hospitals I was in prior to my surgery; and my wife, Michelle. My mom understood the science and knew the right questions to ask. Michelle is plain and simply a warrior. She was nice, but firm. If I had a problem or need for comfort and it wasn’t being tended to, she addressed it. If we had questions, she made sure they were not only asked, but answered. Plus, that support from Michelle and my immediate family has continued now.
And Then There’s Humor
As I’ve said before, I don’t talk about my condition that much to others, but my best friends know what’s going on. There are 18 of us who were close friends in college and remain close to this day. We have a chat app on our phones and all of us are in the group. I've been in the hospital so many times, all of them know my story. Even better, no one treats me differently now than before.
A long time ago when I was in the hospital, one of my friends came to visit. He took one look at me and said, Man, you look like s***. You might think I’m crazy, but that cheered me up. He was real just like always.
More recently following my ostomy surgery, a group of us talked about going camping. At first, I was like “I don't know.” And my friend said, “What do you mean, you don’t know. All you need is a place to turn down. You don’t even need a bathroom.” That worked for me, too. It was funny and made me smile.
It’s ironic, isn’t it. You and I have got all these professionals with all this scientific knowledge, and, at the end of the day, it's often the people close to home who make a huge difference. I’m lucky to have that extra personal layer in my support group and realize not everyone has a significant other, a supportive family or a group of 18 great friends. If you’re without those people in your life, find a great counselor…someone you can trust…someone with whom you can be yourself…and a support group with people with whom you can laugh.
Even with the best of adjustments, we all know ostomy surgery is a hard fight. It’s fair to say it’s life changing. We need people to help us recognize that our new lives will be different, for sure, and with some bumps in the road. But at the end of the day, we need people to ground us, and to reaffirm their support.
And it’s their wonderful sense of humor that sends the greatest message and lets us know that we will be just fine.
Life has an unusual way of pushing you to where you need to go. To me, that’s what Ostoh is all about. If you’re interested in learning more about Ostoh and how it can increase your comfort, email us at hello@ostoh.com. Our goal is to make your ostomy life easier and make you feel what it means to be yourself.