What do you wish you knew before ostomy surgery?

What do you wish you knew before ostomy surgery?


We all have days where our ostomy drives us barmy and we have days where we *hopefully* barely notice it at all, but what things do you know now about your ostomy that you would have like to have known before you went down for surgery?

One of my main ones was incredibly vain well to an extent it was and that was I didn’t think I could wear tight fitting clothes anymore. I literally tried on everything in my wardrobe with a bag stuck to my stomach and binned all the clothes I could see the outline in. I wish I hadn’t done that because some of those clothes wouldn’t have mattered with support wear or high waisted knickers. When I wear tighter fitting clothes now I just try to keep on top of emptying my bag which sure means a few extra trips to the loo but I get to wear what I want too!

I asked on social media what other people wish they had known and here are some of the responses I received:

  • How important it is to support your stoma site in the early days. You are a cough or a sneeze away from starting a hernia. Get a supported belt in the early days prevention is better than cure.
  • That I would be living a much better life than I was living. I was told that would be the case but I wasn’t convinced. I probably wouldn’t have become a tennis player if it wasn’t for my surgery 15 years ago.
  • That full briefs exist!
  • I should have had the hair permanently removed from around my ileostomy site before the operation. Being hairy is a real pain.
  • I never realised all the restrictions on food choices.
  • That the toilet would be a much less intimidating place from then on!
  • I wish I knew how much better I would have felt, instead of struggling in pain for the previous 2 years.
  • How much easier my life was going to be!
  • How much freedom surgery was going to give me. How I would get to live for the first time ever!
  • My surgery was decided quickly due to late stage cancer so don’t think I thought about it much at all but I guess it would have been comforting to know how much online support there was. I didn’t find out until after I was too ill to think to look. Also you can live your life very much as you did before.
  • That you’re not alone and things will get better and that there are people out there who are more than willing to chat and offer sound advice.
  • Just how comfortable you can be with the right bag on.
  • You can do so much more now with the bag then before. I feel free now, also I can wear what I want I just have to keep an eye on things more.
  • That you can have an absolutely cracking love life and if you lack confidence showing your bag during intimacy there’s awesome options out there to make you feel just as good as you did prior to surgery.
  • I didn’t know such a a thing existed util I woke up with two!
  • With the right bag anything is possible just as before.
  • That having an ostomy isn’t a negative thing. You can live a normal life with a stoma. On good days you won’t even remember you have one and you may even become more body confident once you have one.
  • Didn’t know I would be emptying it so frequently, even in the night.

What things do you wish you knew before your ostomy surgery?


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