Tag: fatigue

I is for Ileoscopy

(Yes, I know I’m skipping some letters.)

Also, TMI warning! I will be going into details here.

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An ileoscopy is a scope – a long thing tube with a light and camera on the end – of the ilium (small intestine) via the stoma. It’s different from a colonoscopy where the scope is inserted via the rectum.

I’d never had this type of scope before last week but now I have experienced this wonderful, slightly less embarrassing way of inspecting my gut.

My GI referred me to have one when my calprotectin came back at 4200ish (significantly higher than the normal range of below 50), and all other checks – infection, sodium, etc – had come back as within acceptable range.

I wasn’t given any prep for this scope. I was also told I didn’t need to fast. Knowing how high my output has been recently, I decided to have an early dinner the night before to ensure the least among of mess possible.

Once I was booked in, I was asked to change into a gown, and given the oh-so-fashionable “dignity shorts” (a pair of blue, elasticated shorts with a butt-flap). It wasn’t long before I was taken into the examination room and told to lay on my back. They placed an absorption pad with a hole cut out over my belly and the doctor made a small hole in the window of my bag to access my stoma. He first used a gloved finger to assess the entrance (exit?) of my stoma and which was my gut went from there before inserting the scope (which is apparently smaller than the ones used for colonoscopies..?) I didn’t ask for sedation but had been cannulated anyway, just in case. It was ok at first but got uncomfortable the further in the scope went.

I watched the screen to try and distract myself from the feeling of having something moving through my intestines, and thought I saw where my gut looped but they made no comment on that.

At one point, I thought we’d hit a blockage because it looked like the walls of my gut had closed ahead of the scope, but the doctor pushed on and was able to pass through without issue. It wasn’t long after that he stopped and began to slowly pull the scope back out.

Afterwards, he told me the 15-20cm of gut he saw (and photographed) looked pretty normal, so he wasn’t worried.

As great as it is to know there’s nothing physically wrong with my gut, it also means I am back to square one. We still don’t know what’s causing my inflammation markers to spike, and I’m still exhausted. There’s nothing they can see to treat so there’s nothing my GI team can do.

The only other thing that could be causing my fatigue is my vitamin d levels which are slightly below normal. I now need to go back to my GP to review my  vitamin d & calcium supplement.

And round and round I go again.

E is for Energy

Like most chronically ill people, I know of, and use to some extent, the Spoon Theory to explain my fatigue. If you don’t know, Spoon Theory is the idea that when you are chronically ill or have chronic fatigue, you only have so much energy, or Spoons, to do tasks. Each task taking up a different number of spoons. For example, say you wake up and you have five spoons to spend that day. Having a shower and getting dressed may take up one or it may take up two, depending on your condition. Let’s say it takes up two. You now have three left to use at work, come home and make dinner. But if works takes up three (or in most cases more) spoons, you won’t have any left to make dinner. So, do you have the shower or not?

This is one of the many issues chronically ill people, or “Spoonies” have to deal on a day by day basis. 

Some days, I’m ok; I have enough spoons for work, a shower and dinner. But some days, like today, I barely have enough to get dressed. I needed to shower and wash my hair. This is something I really don’t like putting off because it makes me feel worse if I do. So of course I forced myself to shower this morning. Even as I sit here and write this though, I am feeling drained, and worried I’m going to struggle at work. (and its not even 7am yet). 

This is my reality. This is why I sometimes cancel plans last minute. This is why, some days, I can do nothing more than get dressed and sit on my computer all day playing games. 

And it’s not just me; a lot of Spoonies face the same difficulties. We all get bad days but when your a Spoonie, your bad days can be so much worse. 

Please remember to be kind. If someone says they are fatigued, they probably mean it. There is a big difference between being tired and being fatigued.

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Please note: you don’t have to be chronically ill to have Spoon Theory apply to you. It is entirely ok to relate to Spoonies even if you are otherwise healthy. 

Also note, there are a lot of variations on Spoon Theory, such as the Match Box and Old Phone Battery.  Thanks for reading.