It’s Wednesday night. Sarah and I begin to discuss what we’d like to do this weekend. While this is an easy topic for some, it’s not always easy for me since I have Crohn’s disease. In many ways I am a lucky IBD patient that can feel well enough to do some travelling but that doesn’t mean it’s easy.
After discussing it for a little while, we made the decision to take a short weekend trip to the Berkshires. To prepare for such a weekend, most friends of mine would throw one extra pair of clothes and some toiletries into a small bag and be ready for the weekend. An IBD patient with an ostomy? I don’t think so.
Here’s how I, a Crohn’s patient, prepped for a weekend trip:
We planned to leave right after work on Friday - which meant I had to have everything packed Thursday night. And even for a short weekend, it still means I feel like the high-maintenance boyfriend. After we made a decision, I was already making a list of things I would need in my head. Sometimes I might even get anxious thinking about what would happen if I wasn’t prepared or what would happen if I get sick while we are away. WHAT WOULD WE DO?
A year ago, this wasn’t the case. I would ride a motorcycle up to go camping for a long weekend with a backpack filled with everything I needed. Many times my friends would laugh at how I could probably live for weeks out of the same backpack I rode with on my motorcycle.
But as the saying goes, times change, and so has my life. Now, going away for a short weekend means packing everything I might need ro can think of, for** any** situation that may arise. Packing the night before would take Sarah 7-10 minutes altogether. For me, it was imperative that I take a couple of hours of planning and laying everything out.
As a male with Crohn’s disease and an ostomy, I grabbed a medium sized suitcase to pack for a short weekend. You might be thinking right now “What would he need?” Well sometimes I might need a lot. Here is just a short list of things that I might have to pack that other men don’t.
Extra underwear in case of a leak
Extra clothes in case of a major leak
Medications for my Crohn’s
Medications for my sleeping problems
Ostomy supplies in case it needs to be changed
Hair dryer to dry my ostomy after showering
Towels in case I need to change my ostomy
Poopourri to eliminate odors when I go to the bathroom
Heating pad in case I am in pain
Vitamin powders to mix into my water to stay hydrated
Foods I know will work with my stomach in an emergency
And more that I’m probably forgetting
See? It’s not easy being an IBD patient. It’s not easy being an ostomy patient either. More often than not this can lead to feeling like we’re ‘high maintenance,’ compared to what we were like before our diagnosis or before things got worse.
It’s not always easy to leave the house with twice as much packed as Sarah but it’s what I have to do to feel comfortable. It’s what I have to do in order to be able to have a good time and know that if anything happens, I’ll be fine.
In fact, before we leave for a trip, Sarah runs through the general list of items she knows that I need to be sure that I haven’t forgotten any of them. It’s what we have to do to enjoy ourselves. If I didn’t pack everything that I needed, I probably wouldn’t be able to go away with her. We would rather I pack more and be ready for anything than the alternative. It’s just part of our routine now.
Some people may consider an IBD patient like me high maintenance, and to a certain extent, I am. I certainly am not high maintenance by choice, but it’s a symptom of part of my disease. But changing your perspective can bring on a whole new meaning. I’m high maintenance because I want to be prepared for anything that Crohn’s or my ostomy might throw my way, and so that I can be ready to enjoy life!
_Brian Greenberg is founder of the Intense Intestines Foundation. He primarily works as an advocate to help patients with Crohn’s disease, ulcerative colitis and ostomies. You can reach Brian on Twitter @BrianII For email at Brian@IntenseIntestines.org. If you would like to connect with the IIF more please visit the Facebook and Twitter pages. Also be sure to join Brian in the conversation about all things IBD on the IBDHealthCentral Facebook page. _
Brian Greenberg was diagnosed with Crohn’s disease at age 11. His freshman year of college, he began a roller coaster ride of flares, hospitals stays, major surgeries, and more, with brief breaks of good health. After having an ostomy surgery 6 years ago, making it permanent 3 years ago, he is happy with his quality of life and enjoys helping others with their health journeys. When his health cooperates, he enjoys triathlons, hiking, climbing, skiing, and more.