When will all this feel normal?

Hi everyone! I'm 30 days in from my ileostomy surgery and I'm really pleased with some of my progress: I can change my bag without feeling faint, I'm walking to the shops and I'm managing to talk about my stoma with my friends and joke about it. But, I don't feel normal. It takes so much time (bag changes, managing the high output, hydration, finding clothes that don't show the bag, eating the right things, chewing well - heck, I can't even sleep like I used to). How long did it take before you all felt like your life didn't revolve around your bag? And how do I learn to feel like me again? I think, for the first time, I feel a like I'm disabled. I don't feel young, or attractive, or carefree. How do I reclaim myself?
  • Hi Naomi, It will happen. I think you will one day look back and say that 2019 was not the best year you have had. But let me tell you, everything will get better. I think you need the year. You will get better at managing everything. You will learn what you can and can't eat. My advice on that is to be cautious and conservative with diet and when you reach the best outcome you can manage, then you can reintroduce things you like bit by bit. Your friends have already accepted you and they don't want you to apologise to them all the time for noises etc. Don't worry too much about other people. I have had a stoma for 10 years now and about the only place i am wary about is the theatre/cinema because everyone is so quiet. I won't try to comment on appearance. I think most men probably cope a bit better with not worrying about how they look than women do but for you, there is lots of advice out there. Good luck!!


  •  Naomi, I have had Ileostomy since last July, I feel the same you do, life is no longer what it use to be, full night sleep is over for me, bag changes get easier, do it first thing in the morning for best results, I also have high output and have to go for infusions three times a week to keep hydrated. Naomi, you will always be an attractive women, I am older but also having a hard time connecting with women, but life goes on.

  • Hi Naomi. You are doing super well. You should know that there are so many people who are afraid to leave their home for up to 4 months after having ileostomy surgery. So you're doing great. I got my ileostomy and stoma (nicknamed Reset) on August 8, 2016. It took a while for me. I used to wonder if people could see my pouch. I found that high-waisted pants are ideal - they sit above the top of my pouch and prevent any bulging etc. I race bikes, so getting into my spandex was a challenge - but guess what - no one could see my pouch. With time, you'll forget that you have a pouch. And like John says, with time you'll learn what you can and can't eat and how to eat the day or night before you change your pouch. I found that if I tuck my pouch into my pyjama bottoms, I sleep much better. Sleeping on your side can help reduce the ballooning effect. You're only 30 days in to this new normal - so be patient with it. Sending you a big hug. 

  • Thank you for your kind words and advice - it really made me feel better!
  • Thank you for your thoughtful reply - I agree, 2019 might not be my year! It's really good hearing from people who have dealt with this and are managing well :-)