Crohn’s [Disease] Diaries PART 13: Living with My Intestine on the Outside of My Body

I was rummaging through some old writings. Came across these short diary-like entries from stints in/out of hospital 6 or 7 years back.

These began at a time when I was pretty vulnerable, with no proper diagnosis of the developing illness I had. Gradually, over the weeks, I became more and more aware of this “CROHN’S DISEASE” and started writing about its day-to-day struggles/speculating a lot about its causes.

To this day, Crohn’s has no known cure, but it is more common than people think.

Just no one ever talks about it.

Empty

[Each entry is how it was when I wrote it, except maybe for a few spelling/grammar edits. Don’t use them as a guide; they are merely the experiences of a patient coming to terms with an illness (written mostly on a variety of different meds.)]


 

> Part 13: Living with My Intestine on the Outside of My Body
(Part 12 HERE)

 

Whatever the docs/nurses tell you about “LIVING A NORMAL LIFE” after having an Ileostomy/colostomy op isn’t true.

 

Medically, yes, some might consider it a blessing in that it allows the large intestine time to heal after surgery; there’s noticeably less pain; and it’s not always a permanent “solution” (in my case, temporary).

 

Next year or so, my bowels are gonna be re-connected and everything will work as normal again. But for now, I’m uneasy.

 

A month or so since the Stoma Nurse first lifted by shirt up to show me my “bag”, I’m struggling to get used to the fact that I now have a shit pouch on the right-side of my abdomen.

 

My (bright red) intestine pokes through and I can see whatever I’ve eaten squeezing out and dropping in the sack; and the only thing I get coming out my arse these days is mucus.

 

The pouch needs to be emptied 8-10 times a day (the contents are always runny); rashes are regular obstacles when it comes to bag-changing; and where there’s excess wind, it’s advisable to double up on layers to try and hide the inflation.

 

Still young, I like to think (25 – single), but it ain’t easy going out and mixing with new people.

 

All I can think about is where the next bog is, or if my pouch is leaking.

 

Intimacy? Not likely. The last time I got remotely “close” to anyone was during the last days spent with Selena.

 

The bag had been playing up all that week. Till it eventually burst; and I ended up leaving that shitty colostomy bag in her bed.

 

We haven’t spoken since.

 

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2 thoughts on “Crohn’s [Disease] Diaries PART 13: Living with My Intestine on the Outside of My Body

    1. In response to what I could actually understand in your half-arsed comment, the book relating to these experiences is FREE.

      You can stick your sympathy.

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