My 2nd stomaversary: What lessons have I learned?

My 2nd stomaversary: What lessons have I learned?

It's been 2 years since my second stoma following age 2 1/2 when I had my first reversed as a baby. I went 30 years without one living with a J Pouch to find myself needing a second during the second lockdown. I count myself extremely lucky that I was given that surgery during the times we were living in. I wouldn't be without my stoma now to the point where I get anxiety at the thought of having the discussion of removing it, being as it was given as a temporary one. One thing for sure is there is always something new to learn. I have been Mum to a mini ostomate of my own for 6 years now and consider myself quite experienced. Nevertheless there are still new lessons I can share with you:

Wear what you want!

Sounds silly, but before surgery I spent money on new clothes that were oversized and floaty, worried I would be uncomfortable and my bag would show. Now I wear exactly what I want, if my bag shows a bit who cares?! My stoma is part of me to the point where I forget I even have one most of the time. It's just another part of my body that my clothes fit around and I wear jeans and all the good stuff together with my flowy dresses when I'm in the mood. Not everyone can say they forget about their stoma some of the time, but more often than not with the correct support wear it can be eased. I have shared some of my favourite outfits post surgery in my blog here.

You can push yourself physically

I used to use the gym 3/4 times a week pre stoma life and enjoyed a mix of cardio, weights, even flipping the odd tyre or two! Following surgery I was very anxious about lifting anything, doing weights, and pushing myself the way I did before worrying about getting a hernia. Again, support wear was the saviour here. I wear the Comfizz Level 2 Support Band for working out. There are support bands you can buy on the market also but in the UK you can be entitled to 6 free on prescription per year (including underwear), so be sure to look at all your options before making a purchase.

Menstrual cycles change 

Oh boy isn't this the truth! A podcast with @crohnsfighting opened my eyes to the reality for a lot of women who have suffered symptoms of discomfort following stoma surgery which made me feel less alone. You can find the podcast here. It's a great listen and really informative. Typical symptoms of bloating, cramps and headaches can be amplified with your cycle taking up to 6 months to regulate itself and find its new rhythm. For me I suffered all the above which pre surgery I hadn't. This is something that most were not warned of during surgery discussions. Your output can be affected also but as always it is different for everyone so my best advice would be to keep a diary or download a period tracker. For a visual record for those of us that are visual learners you will find this much more user friendly.

Check what you are entitled to

This can be a tricky one where everyone's reasons for a stoma can be different. I believe one of the most important things we should be told following surgery is what benefits and financial aids we are entitled to as for me psychological recovery is just as important as physical recovery. The stress of income when on the sick when you have a home and a family to support can negatively impact your recovery. It still shocks me when people don't know about the Blue Badge, PIP and Carers Allowance payments. I have documented it before here. Having a disability can also count as a concession for some retail and leisure facilities so make sure to check before you book things in case you are entitled to a discount. 

Stoma life for me has continued to be a gift and I am full of gratitude to those that have helped me along my journey (far too many to mention!). A special thank you to the ostomy community and Comfizz for providing me with a platform to share my story and being the best people to work with!

Until next time, Rach x

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    Thank you Bill & Helen for taking the time to leave us & Rachel a comment! We think Rachel is fantastic & we are so glad to have her on board. Helen, thank you so much for your feedback! So interesting that you have two stomas… If you’d be interested sharing your story with us, please do let us know! Bill, I have a permanent ileostomy too due to severe IBD and a tumour. Have a lovely day, both!

  • Bill Matthews

    Hello I had a ileostomy in January and I’m still getting used to it, the gastro thinks I’ve got BSM bile salts malsorbsion, I had my colon fully removed so there is not much chance of reversal , I’ve also got a large hernia behind my stoma and I feel like the elephant man, your story has inspired me thank you and happy stormaversary 🙏🙏🙏

  • Helen Fowler

    Hi Rach, I think it’s fantastic you have openly told your story, but feel comfizz has been played down, there under wear is above sny comfortable, quick dying if out and accident happen you can dry under hand dryer very quickly lady’s underwear all shapes to wear underneath any clothes you wear and men not left out as boxers, or briefs which support, which are so comfortable you don’t no wearing I have two stoma’s over 35yrs and not looked back , when complies out there that help as fo takes all worry out snd no sores as breathable, I got another good product just come on market if aloud time say, have happy wearing.

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