Having stoma surgery is life-changing, and for many, including myself, life-saving. It also changes your body and your life, but as time goes on, it becomes increasingly more a part of your routine.
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.
You wake up from surgery and bam! It’s time to get used to a big bodily change. This can feel quite the mountain to climb and sometimes, you can wonder how you’re going to get there. But you do. Everyone is different. Everyone has stoma surgery for different reasons. But nobody has to do it alone.
Taking my experience into account, I’m going to share with you five tips that may help you adapt to life with an ostomy.
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.
1. Mix up your wardrobe!
It can take a while to grow in confidence after surgery, but I hope you’ll be pleasantly surprised, as I was and many others, that you can wear pretty much what you want with a stoma and there are ways to disguise bag bulges if you’re worried. Try stoma supportwear to help with this. I wear some kind every day to help my bag secure under my clothes and I LOVE putting outfits together!
Now it’s Autumn in the UK, it’s a perfect time to experiment with layers and accessories. I love a big scarf for layering and jumpers.
2. Develop a routine
This can take a while after surgery but you’ll find your feet.
Whether that’s eating so your ostomy knows when to expect food, keeping hydrated or a bag changing routine. It makes life much easier (when you can).
Your ostomy will be unsettled for a few months after surgery anyway (I found, at least) so trying to find patterns with food and drink can be hard at first, but you will get there. Try keeping a food diary to see if this helps, and eat little and often rather than overloading on big meals. Over time, you may also get to know when your ostomy is more active so that it’s less likely to be messy when you change your ostomy bag, or you may even want to try showering without your ostomy bag on (once your stoma nurse says its okay to do so when you’re healing from your surgery).
3. Stay active, if and when you can and start slow.
This is so important and one that helps me hugely! Always follow medical advice with regard to when to exercise after surgery and how. Again, I wear supportwear. In my last blog post, I shared my experiences on working out after ostomy surgery.
When my bowel feels a bit sluggish, I find exercising really helps get things going, and the same with my mood too. Working out helps me to feel so much better, even if I really don’t want to. Even going on a gentle walk and getting fresh air can be a gamechanger. It’s so important to listen to your body and only do what you feel comfy with. Start slow, and if something feels wrong, seek medical advice.
4. Practice skin care
Proper skin care around the stoma is so important. It helps your bag adhere, and helps to prevent irritation and infections. Your stoma nurse should be your go to, if you want to know more or do develop skin issues.
Respond’s Care Range is a fantastic choice of products to help promote good skin care. From barrier cream to adhesive remover, protective powder to their handy REFRESH 3-in-1, you won’t be short of solutions if you run into skin problems. Also, REFRESH 3-in-1 is fantastic to help prevent skin problems. After all, they do say prevention is better than cure.
5. Talk to others who have had ostomy surgery
It’s the most amazing feeling knowing that they really get it. And who knows? Some of them could turn into friends like these amazing humans pictured here! If you want to follow them and connect on Instagram:
Choosing an efficient delivery service
I have tried a few delivery services but something was always missing. Until I signed up with Respond. Respond have made my life so much easier with a stoma, because I know I’ll always have supplies. 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. It’s always great to know when my deliveries will arrive, especially if I’m planning on going away to a concert for a few days.
Respond’s useful advice and support
Respond have a blog full of posts from other ostomates on their website. Some blog posts in their lifestyle section are:
- Finding the right stoma products – by Mohammad
- Caring for a newborn whilst having a stoma – by Angelina
In summary, as you go along, you’ll discover your own ways of living with an ostomy and things that make your life easier. However, it is vital to keep talking to your medical team and also connect with others who know what you’re going through.
For many, including myself, an ostomy isn’t the end, it is just the beginning!
