A Different Type of IBD Fatigue

You may have read the title of this article and thought you will be reading about IBD, and feeling tired and chronically fatigued despite getting 8-10 hours of sleep per night. This isn't that type of article.

When I say "IBD fatigue" I mean actually being tired of dealing with all things IBD-related.  From the tests, to the doctor appointments, to the battles with insurance. It surely gets tiring dealing with all of the accessories that accompany the life of an IBD patient. And, it becomes even more overwhelming when there is no end in sight since this is (currently) a non-curable disease.

Hard even if you're optimistic

I am typically the eternal optimist when it comes to living with Crohn's. Heck, if it is something I have to live with eternally, I may as well find the best way to cope with it, right? However, there are certain aspects of the disease (like the Entyvio infusion I am currently sitting through as I write this article) that gets tiresome and old.

I have been on Entyvio since 2016 and fortunately, it has put me into remission since then.  When I initially received the infusions, I went to the cancer ward of the hospital, sat for more than a half hour while the medication was mixed, sat for another 30 minutes for the medication to drip into my body, and then headed home feeling both emotionally and physically worn out after witnessing severely ill patients receive their treatments, too. 

But, I felt grateful that the actual infusion was only 30 minutes rather than 2 hours (Remicade) and I didn't require any premedication like Benadryl which would cause extreme drowsiness (see, always the optimist!).

There's always something

Then, in 2020, my infusions were all in-home which made it so much more convenient. Despite the convenience of receiving my Entyvio infusions at my kitchen table, the nuisance of adjusting my schedule to accommodate the appointment gets old. And, there seems to always be an issue such as not being able to find a vein, a defect with the medication, or there is a training nurse tagging along which inevitably will double the length of time they are at my house.

There are other issues that I find myself tapping out of like periodic blood work, GI follow ups just to have my medication refills renewed, and worrying if a random ailment in my body on any given day is linked to Crohn's. 

The list goes on

It is a constant rollercoaster of emotions ranging from feeling great to being fearful that I am just one bad day away from a hospital admittance. The list can go on and on about what is getting tiring and old after living with Crohn's for 15 years.

But I have to remind myself that this can go on for another 30 years so I may as well get used to it and accept it as my part of life like making my bed and brushing my teeth every day.

Questions for the reader

What parts of living with IBD are you tired of dealing with? Where does your IBD fatigue set in when it comes to your symptoms, treatment, and/or maintenance?