How Many Good Hours Are There In A Day For An IBD Patient


Hour GlassIt was the seventh day since I took my medication for my Crohn’s disease. I’m on a weekly injection of a biologic to keep my IBD at bay. Around the sixth day I start to see symptoms sneak back into my life and the quality of the days seem to get worse by the hour. At times the nausea can’t be held back, the stomach pain sets in, and my hands tighten up to the point where I have to ask someone to open a bottle of juice for me. It got me thinking, how many good weeks, days, or even hours do we have sometimes, and what should we do with the good times that we do have?

As IBD patients living with chronic diseases, we never know when the roller coaster will stop going up and start to point downhill.

So, what should we do since we know that our healthy time might be limited? We have to find ways to enjoy it and make the most of it while we can with our IBD.  We have to take the opportunities to live life and experience adventures available to us. Some might look at this as being irresponsible or not doing what is most important. I look at it as time well spent after hugging a toilet, spending time lying on the couch in pain, or weeks in the hospital.

After breathing in the stale air of a hospital room or spending large amounts of time on the cold floor of a bathroom, don’t you want to do something for yourself?

Many friends of mine have witness a lot of what I have been through with Crohn’s disease. They’ve seen me shortly before and shortly thereafter. Some were in the hospital right after my ostomy surgery and saw how quickly my body changed. Others witnessed me just give them a look which clearly says, “Let’s go home now please.” They have seen the misery and the pain, the defeat that IBD patients can sometimes feel when their disease is in control.

I’ve talked to friends of mine and they feel the same way. They look at everything I’ve been through and they just want me to smile a little bit. They’d like to see me enjoy life when I have the chance to do something, ANYTHING that I’m passionate about. And one thing I’ve learned is that they are right. We have to find the things we love and make the most of the good hours we might have. This might be something small and simple such as going for a walk to see the foliage change, visiting a dog park to watch some pups play, or making a home cooked meal of comfort food we know will sit well. Other times it might be something bigger like going for a short trip, training for a goal we have in mind, or crossing a bucket list item off our to-do list.

No matter what, we need to make time to do things that let us enjoy life, to do whatever we can that is within our means. Every time we begin to feel good again, we know that this time is limited. It might be counted in as little as hours, we hope that we can count them in weeks or even months, but for many of us the sad truth is that it won’t last forever. The time will come to an end. So I ask you one question, do you want to look back on this time and say to yourself “Damn, I’m sick again and I wish I took advantage of the time I felt well more.”?

My guess is no, so spend your time wisely, make a list of the things you want to do on different scales, and when you can DO THEM!


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