World Ostomy Day To Me Part 1

What does World Ostomy Day mean to me?

I grew up in a family where we didn’t talk or acknowledge that my aunty had an ostomy. It was all hush hush but apparently, the whispers were that she had a disease called Ulcerative Colitis and didn’t know until her bowel exploded and she now had a bag. She hated it and apparently so did everyone else. I grew up believing it was the worst thing to happen.

Then I got sick at 15 and I knew in my heart that I had Crohn's Disease. I don’t even remember how I knew what it was. It wasn’t like I had the internet or anything. But I remember being so sick and having a colonoscopy and knowing that I was about to be diagnosed with that.

I came to and they told me I had Crohns Disease

It was bad but I already knew deep down so there weren’t any surprises.

Once back at my specialist for the full-on throwing into the disease management plan, he told me a few things. He told me that I’d probably never have children and he told me that it would only be a matter of time before I need to have surgery to have a bag. It wasn’t an “if” but a “when”.

Years and years passed and they were constantly trying to manage my bowel with all sorts of crazy treatments but nothing worked. I was now 21.

I remember my 2nd to last 4-hour trek to see my specialist. I was so sick. I felt like I was dying. I felt like my body was slowly torturing and poisoning me. I cried hysterically the whole drive. I just couldn’t do it anymore. I wanted to die; just so the pain would be over.

Then I met my amazing doctor who said enough is enough

I wasn’t responding to treatment and it was now time for surgery to remove the diseased bowel. He wasn’t sure how I'd cope with it because my life was currently falling apart, and he didn’t want to add more to it. Plus it would mean a permanent ostomy.

My aunt called me when my dad told her that I needed to have a bag.

Her advice was devastating

I'd never be loved with a bag...

But… I knew. I knew that it would mean giving me a life back. I knew that surgery was going to be hard, but even if I got sick again, I'd have a starting point. This would be unlike at diagnosis where I'd been sick for so long first. So what if I needed to have a permanent bag?!

I just wanted a chance to live

So surgery came. I remember first waking to hear my crazy stomal nurse tell me it was the most beautiful stoma she'd ever seen. I thought she was batshit crazy! Haha.

Read Part 2 to continue what World Ostomy Day means to me.