colostomyday

Yep, it’s the start of a new month (white rabbits!) and the last quarter of the year. Where did all that time go?

Saturday 1st October 2016 is Colostomy Awareness Day, headed up by the wonderful Colostomy Association. Living with a stoma (be that a colostomy, ileostomy or other) is still a taboo subject that not many people talk about, and the conditions and implications are little known about unless you’re an ostomate or a close friend/family member. It’s a call to raise awareness and fight the stigma of bowel conditions and stomas.

I’m not there yet with loving my body or my stoma. The relationship between Frank and I is an ongoing work in progress. He’s called Frank because I call him “little f*cker Frank” when he’s playing up or I get down, and trying to laugh about it really is the best medicine.

After years of trying to hide away, make excuses, not ‘let on’ that I’m not well or discuss the array of symptoms & issues I deal with (let alone how they affect my day to day life) I want to change things. Since having an ileostomy, I’m trying to let go a little. Be a little braver. Care a little less about what others think if they have nothing nice to say. To laugh instead of cry. My mental and physical health hasn’t been great, but I’m still here. Day by day, bit by bit, by getting by, even on days when I don’t want to or don’t think I can.

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What would I like to raise awareness of?

  • As with invisible HandOn Bagillnesses, having a stoma is an invisible condition. I may look okay to you, ‘normal’, when really I have more bad times than good, physically and emotionally.
  • Whilst I look normal, I don’t want to feel like I’m being judged when using the disabled toilet because ostomates need the extra room for our supplies.
  • To raise awareness of lesser known bowel conditions that aren’t Crohn’s or Ulcerative Colitis, the two main conditions people first seem to think of. What about colonic inertia, constipation, pelvic floor dysfunction? Not everyone with a stoma will have a condition you have read about in the news, not every condition has a straightforward diagnosis or standard set of symptoms.
  • The feelings those with invisible symptoms have of shame, embarrassment, guilt, fear… The taboo of tummy troubles means we often don’t want to talk about it and keep it to ourselves, which can result in us losing friends, missing out on life and the support we need. The same thing can happen if / when you find yourself with a stoma. It’s hard to talk about. But it shouldn’t be.
  • At the same time, invisible illnesses and/or stomas are private, unique experiences. If we don’t want to share then we don’t have to. It’s not nice when you’re made to feel as though you owe someone a reason, apology or justification for your condition, the things you do or the way you feel.
  • I’d like to raise awareness of stomas in general, to bust some common myths and overcome public ignorance. This includes the limited understanding of some GPs and specialists we come into contact with.
  • You are worth more than a diagnosis and a bag. You are still intelligent and beautiful, inside and out. You’re still you. A stoma will have saved someone’s life, in one way or another. It automatically makes you Awesome – Because you are strong, you’ve been through some incredibly tough times, and you’re still going! 

 

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