“But it’s just changing your ostomy bag!”

Having stoma surgery is life-changing, and for many, including myself, life-saving.

That being said, there are times (thankfully few) when having an ostomy can feel all consuming for some, especially when you feel poorly or bag leaks are being a pain. Note, bag leaks are not the norm for those with stomas. If this is the case, it’s vital to speak to your stoma nurse about possible alternatives and things you can add into your routine to help.

Please note that this is with regards to my experiences living with an ileostomy and using a one-piece, drainable ostomy bag. Let’s get started.

I’ll briefly set the scene and give you the background info. My stoma, ‘Stacey’, was formed in 2011, when I was 19 years old. I needed her due to severe Crohn’s disease (a form of Inflammatory Bowel Disease (IBD)) and due to a large, benign tumour on my colon, the size of a watermelon. Surgeons didn’t find this until they operated. If surgeons had left things even a few hours, I was told I wouldn’t be here, so she literally saved my life.

Is it just that you “can’t be bothered?”

I’ll admit straight away that there are times where I honestly can’t be bothered with changing my stoma bag, but actually, when I sit and think about that, it’s not me being lazy. Thankfully, I don’t often feel this way, but sometimes, it can be one more thing to think about that you don’t need. However, the alternatives don’t bear thinking about. Either, not being alive, or being alive but having accidents all the time without my ostomy bag, when I was severely poorly with Crohn’s disease before my surgery in 2011.

Amy poses in purple underwear, smiling, while holding her Respond stoma bag.

Fatigue – tired of being tired

One of the things I struggle with the most consistently since I was diagnosed with inflammatory bowel disease (IBD) aged 7 is fatigue. Fatigue is way more than being tired. It’s exhaustion, getting emotional because you’re so tired, body aches, brain fog, mouth ulcers, you name it.

When I’m really struggling with my energy, I can put off changing my bag because I don’t feel like I have the energy. I feel that heavy and tired. But then I tell myself that I always feel better once I’ve showered and changed my bag. I remind myself that having a stoma bag to change is something I once longed for when I spent my life on the toilet, in agony and going anywhere between 20 to 30 times a day, until my bum was red raw and bleeding. It’s a good “problem” to have, when your bowel no longer takes up all your life and actually takes up a very small part of your daily routine.

Amy looks comfortable and relaxed on her bed while wearing all purple gym gear.

Seeing my stoma

Seeing my stoma never bothers me when I change my bag. I fully accept my ileostomy. I am here because of it. However, when I feel nauseous, dealing with my stoma and emptying bag can not be the biggest help! Again, I remind myself that having my stoma is actually a blessing and it’s an enabler. It empowers me to do so much.

How I make my routine feel less overbearing

For me, making my bag changing routine as simple and as quick as possible is key when it comes to my daily life, especially when my fatigue is particularly hard to deal with.

I keep all my stoma bag supplies in a narrow drawer unit in the bathroom, so I know that everything is to hand. Then I keep my surplus supplies organised in clear long and narrow boxes under my bed. Knowing that my supplies are organised and easy to access makes my routine feel much less clear in my mind, so it takes up less of my headspace.

Respond do a handy 3-in-1 ostomy product, REFRESH, which is an adhesive remover, air freshener and skin barrier spray all in one. Having less products can be another way to consolidate your routine into something that feels much more manageable.

Choosing an efficient delivery service

Respond have made my life so much easier with a stoma. I have regular, repeat orders that they send out without me needing to contact them. Only if I need something changing do I need to get in touch. I get regular updates every step of the way when it comes to my delivery and I don’t need to panic about not having supplies.

A Respond stoma supplies travel bag sits on a marble countertop alongside a bottle of REFRESH 3 in 1 - ready to take on the world!

Respond’s useful advice and support

Respond have a blog full of posts from other ostomates on their website. Some recent blog posts are:

In summary, having an ostomy can sometimes feel tiring, especially the things that may seem small such as changing your bag. Simplicity in your changing routine, being kind to yourself and putting things into perspective are things that can really help. However, it’s okay to sometimes feel down about having your ostomy, it’s a big change to your body. Just remember, you’re not alone and you deserve support.

For many, including myself, an ostomy isn’t the end, it is just the beginning!

Amy
@ibdwarriorprincess

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