In January 2015 I underwent emergency surgery for an ileostomy bag, after being misdiagnosed by doctors three times before finally being admitted. I’d initially been admitted with suspected appendicitis, but after having key hole surgery for my appendix to be removed, the problem still hadn’t be solved. Five days later and I’m being rushed down to theatre with doctors shoving papers at me for me to sign, to give them permission to operate on me. I was hours from death. A four hour surgery and a bucket of morphine later, I awoke to see my family and boyfriend next to me. I didn’t understand had happened. I didn’t want to. But of course, it was impossible for me to avoid the situation. I peered down to my stomach to see a large swollen scar running down my abdomen, alongside a beige bag that was stuck firmly onto the right bottom half of my stomach. Tears ran down my face as reality sunk in. I’d been given a stoma. I didn’t know anything about stomas, and it scared the hell out of me.
If you don’t know much about ileostomy, or stomas, here’s a little info for you. A stoma is a surgically created opening in the abdomen, for where your waste comes out. They removed my large intestine, so didn’t have a fully functioning digestive system. So what they did was bring the end of my smaller intestine outside of the abdomen, and stitched it in place. They then covered that end with an ileostomy bag which catches the waste, and that bag is emptied several times throughout the day.
I was later informed I had unknowingly been suffering with Ulcerative Colitis – a major form of IBD (Irritable Bowel Disease). According to the surgeons, my colon was badly ulcerated and if it had been left a further few hours, it would have perforated and I would have died. The stoma had been my only way of being here to tell my story today. And I will be forever grateful for it.
Having a stoma makes you realise some things you’d probably never acknowledge before. It forces you to learn things you’d never approached and ultimately opens your mind to the world beyond you. So here I share with you, 11 things you only know when you have an ostomy:
1. It really isn’t noticeable under your clothes
You expect to have to spend the rest of your life in your pjs, but it just isn’t like that.
2. Support pants become your best friend
Support pants keep your bag flat, enabling you to be able to wear things such as tight skirts and skinny jeans. Forgetting your support pants becomes the biggest mistake of your life.
3. Healthy food doesn’t always benefit you
You have to be seriously careful with healthy food when you’re out in public, because it causes an extreme amount of gas. And yep, you end up with a whoopie cushion on your belly! You need to find that comforting middle ground where you can go out with friends without putting a ton of weight on.
4. Popcorn becomes your biggest fear
The biggest ostomy myth is that you shouldn’t eat popcorn, as your body doesn't always digest it properly, so that can cause blockages. But I'm happy to confirm that's a load of bull.
5. The thought of going swimming for the first time is terrifying
You're convinced that people will basically just point and laugh. But a high waisted bikini can solve all your problems.
6. If somebody loves you, it won’t matter
You come to learn who’s impacting positively on your life who’s just bringing you down. And if somebody can let something so life saving affect your relationship negatively, they’re simply not worth it.
7. An ostomy does not affect your sex life
Sure, you may feel a little insecure, and it does take some getting used to, but by no means does it mean you have to do missionary for the rest of your life. Having sex with the right person can help re-build your self-esteem and makes it all the more easier.
8. 'No way! You couldn’t even tell!' becomes your most frequently heard phrase
9. There’s more to life than body image.
When you’re living with a bag on your stomach, you come to realise 'who cares how fat or thin somebody is?' My ileostomy bag saved me, and I’m grateful for that. By no means will I let myself feel bad about the way my body looks now.
10. You can’t feel it
Fun fact: A stoma has no nerve endings, so unless you’re looking at your stomach, you wouldn’t know it’s there!
11. It is not a disability
Your body is fully functioning, just in a different way.
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This article originally appeared on The Debrief.