Having stoma surgery is life-changing, and for many, including myself, life-saving.
Having a stoma comes with both good and bad factors, thankfully considerably more of the good for a lot of people. In today’s post, I am going to go into the advantages, in my experience of living with a stoma and why I’m grateful for my stoma. 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.
Let’s 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.
Finding the joy of food and drink
Learning to experience food and drink for the first time in my life without fear was amazing. Having said that, my appetite took quite a while to develop. I’d say it was 3 or 4 months after surgery where I could manage a reasonable sized meal. I quickly felt full and my body hadn’t been used to food for as long as I can remember, so building a positive relationship with food took time. I found myself being fearful and really worried about food causing me pain. That was what my normal had become, so I had to learn a new normal, along with many things in stoma life. Now, I really enjoy my food and going out for meals. I can eat so many things and the things I can’t eat seem so little in the grand scheme of things. I don’t drink alcohol as I find it makes me sick, so this is more of a personal choice for me and is different for everyone.
Wearing the clothes I love
Again, early days post surgery I was so worried I’d have to live wrapped in a bin bag or loose clothes. I found stoma supportwear and this totally changed the game for me. I started being able to wear tighter fit clothing, and as I started to stabilise after gaining weight in the first few years after surgery, my wardrobe collection grew too. I love my clothes and styling an outfit and without a doubt, this is something I would never have had the energy to do, let alone be able to maintain my weight before my ostomy days.
Not having the toilet as my “best friend”
One of the most fantastic things about having my permanent stoma is not having to live a life that revolves around the bathroom. I can go out, go to gigs and go about my life without having to worry constantly where the closest toilet is. The only days where this is a factor is if I’ve got an upset stomach and my ileostomy output is more watery and frequent than normal. Even then, there are things such as taking Loperamide that can help to control this and slow it down.
Making friends
I have met so many amazing people since having stoma surgery, some of whom I’m so grateful to call my friends. Empathy is definitely on another level from sympathy, and finding your people who just get it is an incredible feeling. Being able to empower and support one another and share the good and the bad times is really quite priceless.
Holding down a job. One that I love.
I can work both an employed job, be a director and bookkeeper and also do my freelance content. Sure, things still have a balance, but I wouldn’t have been able to entertain a job before my surgery. I work doing things that I love, mainly in a digestive system charity and in the bowel/digestive health/ostomy world. I enjoy helping others where I can and also love learning new things.
Gym, gym, gym!
I have just recently got back into the gym after taking three years out and it’s done wonders for my mental health, before even considering the physical health benefits. I make sure I wear stoma supportwear and my husband is my own personal trainer and is really into his fitness. So I’m in good hands. I go twice a week so work out for just over 2 hours each week at the gym, and it’s all thanks to my stoma that I’m able to.
Going to gigs and singing
Music has always been such a big part of my life. Just before lockdown, I started singing lessons which have led to me doing gigs with my singing school. I also love going to see live music and being at a gig is one of the places I am happiest. I usually wear a maxi ostomy bag to gigs so I have to empty less, and carry a little toiletries size ostomy deodorant.
Walking our pup
Going on many a dog walk is something that may seem so simple but is only possible thanks to my stoma. I wouldn’t have been able to anticipate when I needed the toilet before or the pain that would more often or not be there. Thanks to my stoma, my husband and I can go on so many walks and explore new places with my ostomy, without having to be constantly aware where the nearest toilet is.
Respond’s useful advice and support
Respond have a blog full of posts from other ostomates on their website. Some recent blog posts that talk about life with a stoma are:
- Can you take a bath with an ostomy?
- Pilates classes with a stoma – by Phillipa
- Conversations that spark confidence – by Mohammad
Respond’s ‘Care Range’ is also designed to promote simplicity in your ostomy routine.
In summary, my stoma saved my life. That in itself is the main reason I am grateful for my stoma. It sometimes comes with its challenges, but these are nothing compared to what little quality of life I had up until I got my stoma. I could list so many more reasons about why I’m grateful for my stoma, but I would be here all day just getting started.
For many, including myself, an ostomy isn’t the end… It is just the beginning!
