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What Would I Tell Earlier Self About Life with a Stoma?

I was diagnosed with Crohn’s disease at a relatively early age back in 2003, I wasn’t even aware back then what a stoma was. I had come across a few people who had one but they were elderly and my mum used to tell me about them as in her line of work it is something she comes across regularly. 

Thinking back to when I got my first stoma I didn’t even think about what it was. The surgery was an emergency; I was on life support when it was carried out. I literally had no choice in the matter. I woke up after 3 weeks and it was just sitting there with tubes coming out of it and a bag covering the offending little pink thing that was stitched to my stomach. 

That stoma was a massive part of saving my life and I can honestly say at the age of 23 I hated it. We had a love-hate relationship. Due to the nature of the emergency, the stoma wasn’t placed very well; it was on an incisional hernia and had a massive crater of an open wound next to it. Bags wouldn’t stick, my skin was allergic to the bags that were initially tried. I spent 3 years living with burnt skin and constant leaks. It was something that I got used to. It’s also part of the reason as to why I now have major sensitivity issues regarding smells. 

My reversal three years later was literally the happiest day of my life but the issues quickly started following that surgery. Little did I know that 3 years after that reversal I would be begging my surgeon to put the stoma back. 

What I know now

I have spent the last 3 years proving that life doesn’t end after that stoma surgery. You can live and enjoy life and most of all, this new stoma improved my quality of life. 

This little moving squishy called Bertha has given me the most fantastic 3 years of life that was actually worth living. I am no longer confined to my home, I am out working full time again and juggling 3 jobs which I find incredibly rewarding and I am extremely thankful for that. I no longer have to worry about being incontinent and starving myself just so I can pop out of the house for a few hours. 

Life is worth living after 4 years of wondering why on earth I had agreed to have the reversal done. 

What would I tell myself about the stoma? 

I would with hindsight tell myself that it is not the end of the world. I would tell myself that life does and can improve following that surgery. 

Recovery from the surgery can be painful and slow. You are meant to rest and heal. Pushing yourself too far and too quickly can possibly push the recovery back. 

It is a little weird, looks a little alien at first, it can be large and swollen. The swelling does indeed go down and the stoma will settle to the final size within 12 weeks. 

You may have initial teething problems as the swelling goes down post-operative. This could be sore skin, the baseplate potentially not sticking or leaks. Please make sure you utilise your stoma nurse!! Don’t be afraid to ask to try different products. 

Your bag isn’t visible under your clothing. There are numerous ostomy undergarments, support belts, and clothing that can be used to support both you and your stoma. 

A stoma is not an old person disease. Stoma’s are occasionally painted in a negative light in the media but for those of us living with a stoma that is not always the case. 

You will have good days, in-between days and bad days, but to me, that is just the normal run of life in general. 

What to do if you are facing surgery? 

If you are facing surgery and don’t know what to expect then please look at Youtube, blog posts, Facebook groups, Instagram and Twitter. There are many patient advocates or ambassadors that you can message individually to ask for and garner advice. 

What to ask your surgeon?

Compile a list, no question is ever too absurd to ask.

  • How long will the surgery take? 
  • What is the expected amount of time to spend in the hospital?
  • How long will the recovery take? 
  • How will the operation be carried out?
  • Ask about pain medication
  • Ask about stoma placement as they can take your clothing into consideration
  • What to pack?
  • What you can eat?

This is just a short list but these are some of the most commonly asked questions for those facing surgery that are posted up in the groups.

That’s about it from me on what I would tell myself back then about stoma surgery and living life. 

As always 

Many thanks for reading

Louise X 

Louise uses our Vitamin E range to keep her stoma site healthy. To try a sample, click here.

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