I promise you, it gets easier
It’s not easy having a colostomy bag. Adapting to new changes. A whole new way of living. No one can tell you that it’s going to be easy. It’s not easy even for the strongest person.
But I promise you, it will get easier! You will get used to it and you will be braver as time goes on.
People will ask you questions. Lots of them.
Some of them will be awkward
“but what about your bum, don’t you poo out there anymore?”
Others will be about their own curiosity
“what does it look like?”
Some will be silly
“I thought only old people get them”
You don’t have to answer anything you don’t want to. You don’t have to tell anyone about your ostomy if you don’t want to.
I did.
I chose to educate people so that they know what it is. I didn’t want people to continue living with no clue that you can have an ostomy at ANY age! Even tiny babies have them so no, it’s not just for old people.
At the end of the day, most people are just ignorant and they don’t mean to be offensive.
When your ostomy let’s out a loud fart and people laugh, it’s because they don’t know how else to handle the situation. Farting in public is so taboo but when you can’t control what sounds come out of your stoma, they will react in the only way they know how.
New ostomate, don’t feel ashamed. It’s not you. It’s them. Really.
[bctt tweet=”Dear new ostomate, it gets easier – I promise! #OstomyAwareness” username=”tyrannyofpink”]
You will have bad experiences
Your bag might fall off in public. Yes, true story! You might feel the world of shame rushing down on you. You will survive.
You might wake up in the middle of the night and your bag has burst. You might have to clean up a huge mess. It’s just an icky part of being an ostomate.
You might get sneered at for using a disabled loo
“BUT YOU DON’T LOOK DISABLED” but that’s okay. That’s their issue not yours. Not all disabilities are visible. Yours especially isn’t. You can flash your bag at them if you like (that’ll shut them up) or you can choose to just walk away.
You can choose to explain to people what it means to have an invisible disability. Or you can choose to laugh it off. The shame isn’t on you new ostomate.
[bctt tweet=”Not all disabilities are visible #OstomyAwareness” username=”tyrannyofpink”]
It might take a while to adapt
You might date someone new. If you’re single and not in a relationship. They will probably not know how to handle it. I promise you, a normal relationship is possible. Please don’t feel ashamed or like you’re not good enough.
If you want to go on and have babies, it’s possible for plenty ostomates and having a stoma doesn’t mean you can’t have a normal pregnancy.
You will find that alcohol makes your output more runny and that you either have to cut back on drinking or be prepared for your bag to fill up and then fill up again! It’s just a part of your new way of life. You will get used to it. You may never like it, but you will learn to adapt.
You will discover that some foods cause problems, some create more gas and some cause blockages. Don’t panic. Over time, you will learn what works for you and what doesn’t. Hint: gassy drinks are a no-no in public 😛
You will ask yourself questions like “WHY ME?” and you will be sad that this is your new normal. You might feel like a weirdo or a freak or like you’re being punished for something. I think these kinds of feelings are normal but please remember, you aren’t a freak and you’re not being punished.
Be patient with yourself
It helped me a lot when I thought “why me?” to remind myself “why not me?” – This happens to so many people on a daily basis that the odds really are that it could happen to anyone.
I constantly reminded myself that my stoma saved my life. It helped me so much when I felt sorry for myself to remember that the alternative was dying. I didn’t die. My stoma saved my life.
I know it’s not easy but dearest new ostomate, be kind to yourself. You will adjust and you may never truly accept your ostomy but I promise you, it gets easier to know how to live with it.
You can still wear normal clothing and most people will never know it even exists. It’s your choice to tell people, or not to.
But please, never be ashamed of yourself or your stoma.
People with stoma’s are normal people too. They are people like you and people like me. They just have a different normal that’s all.
Be kind to yourself. Love yourself.
I promise you, new ostomate, life goes on and people accept it and you more easily than you think.
Please be patient with yourself.
It gets easier!
xoxo
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Dearest Jonelle…
What a truly brave soul you are. First of all I want to say that I love your blog…it’s real…It’s relatable. ..and oh so inspiring. Very recently my mom had a colostomy and I had no clue of what to expect or what to do in terms of helping her…not just physically but more emotionally. And I agree with you a hundred percent that everything that you have spoken about is exactly what she has experienced from costs to the stigma…to availability. ..and to the fact that not all colostomy bags are made equal or yield the desired outcome of what it is that they were made for. But that aside after reading your post very recently ( having no time to read as life sometimes gets a little bumpy )I understand all of this a little better…Thank you. Thank you for being brave enough to share your experience which has made my mom’s experience better…You are truly in my opinion…the definition of what brave looks and sounds like…I love it. Thank you xxx
Wow Lee-Anne, thank you SO much for this lovely comment! Having my ostomy was the hardest thing I’ve ever had to deal with. Sometimes I look back and I wonder how that even happened to me. I tried really hard to write about my experience so that others don’t feel as alone and also, so gross. I often felt like this is AWFUL but actually, it’s not and you learn to deal with it, it’s more just that people don’t know enough. I really am grateful that you took the time to leave this comment – it means so very much to me and I hope your mom in time learns to cope with her new normal. It’s a small price to pay for being alive. All the love to you both xoxo
Gosh , this post gave me goosebumps !
I truly believe that you are one remarkable human being who is going to change the world.
You are so brave and so beautiful, and so very inspirational <3
Keep them posts coming !
You are always so lovely and encouraging <3 Thank you so much Cass! It really does mean so much!
I remember how hard it was waking up with no clue and no one to talk to and I just hope putting this out there helps someone else feel less alone. It's hard enough without thinking you have no one!
<3
My beautiful, brave daughter. So proud of you. ??
Thank you so much mum <3
Thank you for writing this. I only know about stomas and colostomy bags because of a blog post I read in 2014 where a woman had a very bad experience with a public loo and people’s ignorance. It made me more aware, but also more conscious of the impact of small cruelties and small kindnesses.
Though many people reading your post will never live with s stoma, they will be more aware of the support they can offer.
Thanks Tamarah! In the support groups I’m in, SO many people experience discrimination and abuse for using the loos. I can’t imagine having to change a colostomy bag or clean up a mess from a burst bag in a normal loo but people have NO idea about these types of things and just think you’re taking advantage of disabled loos. In the UK, you get special keys for public disabled loos and that makes things easier but the ignorance around this issue can be so damaging.
Thank you for your encouragement – I may not have a stoma anymore but my life is forever changed by the experience. <3