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Fatigue and IBD: A Story of Absolute Exhaustion

We’ve all felt tired; I thought I knew what tired felt like. When I was 19 I worked as a cake decorator at one job and was a dance teacher/choreographer at another. I taught 10 classes per week for recreational and advanced competitive dancers age preschool to adult. I was going to school at the community college and somehow managed to fit in time at the gym and maintain a relationship and social life. I was tired… or at least I thought I was. Then I learned what absolute exhaustion felt like and I realized I had never felt anything like it before in my life.

Absolute Exhaustion

To be honest I was miserable doing all that I was doing when I was 19 but I had some other things going on in life that had me feeling like I had to be doing all of that. Add in the fact that I was a perfectionist who only thought in black and white and held myself to ridiculous standards… well, it wasn’t good and I wasn’t able to do as much as I was for very long. Luckily though my IBD was in remission that year and that allowed me the capability to do as much as I was. 

This story takes place during the on one of the very few days I spent at home in-between my first Jpouch surgery and the second. The rest of the time I was hospitalized because I kept having complications so I ended up being readmitted the day after this happened. 

I sat in my room debating whether or not to shower and get ready; something I hadn’t done in so long. I stood up and walked to my mirror trying to recognize who I was now. My hair: so thin. Acne all over my face and back from the past year of continual high dose prednisone. Me, with a swollen belly but a skinny malnourished body.

 My surgery scar was still fresh and red and had steri-strips on it and there was my ostomy bag. As my gaze moved to different areas of my body I wondered if I should shower with the ostomy bag on or if I should take a shower with it off. No one had told me.

Is this real life? 

Dear god am I tired. I sat down on a chair at my desk. My body was so weak from this past year and all that it had been through. Did I really just sit down before I got started? I couldn’t believe it. Eventually I stood back up and placed all my ostomy supplies out on the large desk before me.

I figured this would be a nice place to change the bag. I placed the curved scissors, the stencil used to measure my stoma, adhesive remover wipes, a new bag, a trash bag, deodorizer drops, and some gauze before me and then decided I wanted to shower with the bag on because I was just too tired to do this right now. 

Taken after I had gained some weight back

I walked to the bathroom and stripped off my clothes and stepped into the shower. Exhausted. I felt so exhausted. Why is it that shampooing my hair and washing my body feels so difficult? 

It did feel nice to clean myself somewhere other than the hospital and to have some independence. I sat down in the tub to do most of the work because standing was something I was unable to do for long periods of time. So there I was sitting in the tub with the shower turned on and the water spraying down on me. My tailbone hurt as I sat there because I had lost a lot of weight. 

Everyone was worried. Knocks on the door checking to see if I was okay. No one liked the idea of me showering alone.

“Leave the door open!” 

“I can stay in there with you!”

“Have someone in there with you!”

I’m fine! 

I hollered back. Did I look that bad? 

Even Worse Than Exhaustion

Somehow I finished my shower and that took everything I had. Everything. I sat down and I cried because I forgot how easy it used to be. How you never think about things like your morning routine. How fast and easy it is to take a shower, dry your hair, put on clothes, put on makeup, and get on with your day. 

I had never felt like this before. This was total exhaustion. No, this was something worse than exhaustion. My body was weak and I imagined that this was what it must feel like to be sick and have a terrible disease. And that was when it hit me that I am sick; I have a terrible disease. I was so wiped out after that shower that i walked back to my room and sat down again. I waited a few minutes and then 

changed my ostomy bag and looked at my emaciated body in the mirror. The bag appeared even larger than it was up against my small body that was now under 90 pounds.

This was not tired. Fatigue is something worse than tired. This is exhaustion that you can’t even describe to another person. This is something no one could even comprehend unless they themselves have gone through it. I never did finish getting ready that day and I was admitted back into the hospital a day later. I had another emergency surgery, continued to lose weight, and became more weak and more tired for the next 5 months until I couldn’t even walk up the stairs.

Sara

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