Today is October 6th and also World Ostomy Day. In raising awareness of stomas and working to reduce some of the stigma, days like this can be vitally important.
Last year focused more on ‘Colostomy Day’, which I also did a post for here, but as many of you may know, colostomy is only one type of stoma. I have an ileostomy, but there are also urostomies, and so ‘Ostomy’ is more fitting.
5 Things I’d like to raise a little more awareness of :
- There are numerous reasons for someone to have a stoma. It is not just for IBD, ulcerative colitis or Crohn’s. Other conditions or issues may result in the need for a stoma, be that temporary or permanent, from cancer and pelvic floor problems, to lack of peristalsis in the bowel and even accidents/trauma to the abdomen.
- A stoma may be temporary (ie. ‘reversible’) or permanent.
- It’s hard to say what life with a stoma is like because it’s a unique experience & will be different for everyone. For some, it may give them their lives back, not negatively impact their day-to-day lives, & they face minimal problems. For others, there may be regular problems, from obstructions to skin problems, and a stoma could affect what they do, what they eat, their self-esteem etc. I would imagine the majority probably fall in the middle of the extremes, myself included.
- Many with a stoma will also have other health conditions which impact their lives. In itself, a stoma isn’t a barrier to life. Travel, intimacy, sports and swimming are all still possible. There are adjustments that can be made (ie. hernia support). But that’s not to say that everyone with a stoma is well enough to travel the world and go sky diving; it doesn’t work that way. Many of us still struggle with other conditions, and many may struggle with the impact on self-esteem that a stoma has too.
- A person with a stoma is still a person, that never changes. They are more than just a bag.
I have now had 5 surgeries, 3 of which were for my stoma. The first to make the original ileostomy, the second for a colectomy (remove the large bowel) and the third more recently to ‘refashion’ the stoma. I’ve had a quite a few trips over my time with the stoma to A&E due to tightening/twisting/obstruction of the end of the small bowel, various other challenges with bags, leaks and my skin, and less severe obstructions that sometimes can be catheterised at home. It’s had a knock-on effect to my confidence but it’s also affected in a more positive light the way I see health and my ability to better prioritise the need for self-care and appreciation of my body, rather than just focusing on appearances. I also know that this was a last-ditch option for me; without the stoma, I wouldn’t be here. The same is true for many of those with stomas. I still get angry about the reasons I have a stoma. I still get the ‘what if’ and resentment and wishing to turn back time. Acceptance doesn’t always happen quickly or easily, if ever at all for some.
I have days where get on okay with my Prada bag and can be thankful for the life it’s allowed me to lead. I also have days when I’m totally frustrated and utterly disheartened. Days when other issues, like fibromyalgia, migraines, utter exhaustion, makes me want to hide away. But you keep going, day by day, step by step.
Live Your Best Life
Having a stoma is not a life sentence. There’s no guarantee how things will go, but that’s true for anything in life. We make the best of what we can. What I can say with certainty is that it’s helping me to grow, to learn more about myself, to realise I can be more adaptable and resilient than I thought. Having a stoma generally means adapting your life, your thoughts, your priorities, and finding new avenues to live your best life.
A stoma saves lives. It is not something to be ashamed of. Be proud of your body & who you are.
I’m more than the bag and more than any illness I may have. And so are you.
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