I’ve always told IBD patients that as long as they aren’t flaring, a reasonably normal life is possible. With the right planning and preparation, patients have the ability to participate in most events and activities that pop up during everyday life. But sometimes the little things add up and remind us that we have extra responsibilities as IBD patients.
For instance, right now I’m typing this in Central Park, enjoying a beautiful day by one of its lakes; a near-perfect afternoon, but not quite. To make today happen required a good amount of effort and preparation. At this point, I’m just glad and grateful to have been able to get here, have lunch, and read.
Non-patients aren’t generally aware of the steps we take to take part in regular events, and I want to share what even an easy day like today required:
The first drawback was that I had to leave the dog at home. It would have been real nice to have Buddy here, lying on the grass, and enjoying the day with me but while planning the day’s bathroom breaks, I realized it just wouldn’t work. You can’t exactly leave a dog alone outside a bathroom, especially in such a big and crowded park. I would have had to cut the relaxing and productive day short and head home since a bathroom break is always two or so hours away.
The amount of preparation wasn’t limited to spending time at the park, though. The walk to Central Park was also a concern. My rectal area is currently so bad that a 15-block walk that should take only 20 minutes can cause serious pain. I had to not only plan what to pack for a regular day at the park but also what my body might need in case I started to feel bad.
One of the regular parts of the day that we are challenged with as IBD patients is a trip to the bathroom. I’ve only been here for two hours but have already had to pack everything to get to the bathroom. When I returned to the same area afterwards, there was a moment when I saw everyone relaxing and yearned for their security of knowing they can spend hours upon hours here and (maybe) never have to worry about going to the bathroom.
I’m not convinced it will ever get easier. I’ve worked a lot over the years to not let all these regular complications and worries get me down, but sometimes I slip and fall. Occasionally, like in this moment, I fear that I’m missing out on certain aspects of life.
Just think positive.
Even though July will bring my 37th surgery, I know that I’m still one of the lucky ones in the IBD community. In starting the IIF, I have managed to use the difficult experiences I’ve gone through to find solutions and help people. That’s a win in itself, but even better is how being around such a positive community has rubbed off on me. I’m pretty lucky.
And now, back to my day at the park.
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