The final post for Ostomy Orientation Week (or month as it turned out!) goes a bit deeper and personal, pondering some of the more difficult questions and feelings around life with an ostomy. Telling people you have an ostomy, the best and hardest things about life with an ostomy, and the big one, do you have a better quality of life since having surgery?
Thank you for following along and joining in. I hope you’ve learnt as much and found these posts as valuable as I have!
1. Who have you told about your stoma? 😶🙆🎤🙊
This comes down to personal choice. What are you comfortable with? There is no reason to tell someone you have a stoma if you don’t want to. At the same time, there’s no reason to hide it if you are happy sharing. All of my friends, family and most of my work colleagues know I have an ostomy. It’s not the first thing I blurt out to everyone when I meet them, but in the right place and at the right time, it normally comes up in conversation eventually. Some people I tell I only give very minimal detail, whilst others I tell all the ins and outs. You can usually sense who is interested and who doesn’t want the gory details!
Who do you usually talk about your ostomy with? Do you bring it up or wait to be asked questions?? Do you prefer to hide it or discuss it openly? How do you explain it to someone who’s never heard of an ostomy before?
2. What is the Hardest thing about living with a stoma?
This is a tough one to answer. I am lucky to have adapted to being an ostomate extremely well, and for me any of the negatives are far outweighed by the positive outcome of my ostomy surgery, being healthy and having my life back. I can honestly say there is nothing that I have not been able to do BECAUSE of my stoma. In fact, there are many things I have done THANKS to my stoma.
I know there are many people that would not agree with this and living with an ostomy can be difficult for some. I am lucky that I have adjusted well physically and mentally, I have never had issues with leaks, nor any major complications, and I have an incredibly supportive family and husband. I acknowledge that my answer to this could be very different given other circumstances.
Therefore, the hardest thing for me is the fear that lives in the back of my mind that this may not always be the case. That I may have issues or complications related to my ostomy down the track. But for now, I have to maintain that positivity and outlook, and focus on living a Stoma-licious life and not the what ifs.
What’s the hardest thing for you?
3. What is the Best thing about living with a stoma?
This might be surprising for some, but there can actually be a lot of great things about life with a stoma! I even wrote a post on 10 Reasons Life is Great with a Stoma!
Up there as #1 would have to be the FREEDOM that my stoma has given me, tied in with the fact that I can poop anywhere! I have my own portable toilet attached to me and most of the time, nobody is any the wiser! In a Crohn’s flare I was scared to leave the house and not be near a toilet – some days the frequency, urgency and anxiety were unbearable. The toilet is no longer the first thing I look for when going out or to anywhere new. I love the fact that I can now poo sitting at my desk, at the dinner table, in the car, in bed, basically anywhere!
What are some of the best things about life with a stoma for you?
4. Do you feel you are “cured” since surgery? Do you have a better quality of life? Are you healthier?
This is a biggie. My biggest fear before surgery was that it would not make me better. It was my last resort, and if it didn’t help, then what? I was out of options.
Thankfully my surgery quickly put my Crohn’s into remission. It enabled me to fulfil some lifelong travel dreams. My partner and I went on a 10 month world holiday just 6 months after I had my surgery! On so many occasions during that trip we both commented how amazing it was, and we wouldn’t have dreamt a few years ago that we would be going to some of the places and doing some of the things we were doing – but there we were, ostomy and all!
I know that surgery is not a cure. Crohn’s disease could appear in other parts of my digestive system, like my small bowel. There are other symptoms of the disease (like fatigue and joint pain) that could also affect me in the future. For now though, I am healthy. I am far healthier than I was the 4 years prior to my surgery. My quality of life is so much better now than it was during a bad Crohn’s flare. In some ways I wish I’d had the surgery sooner.☺❤😀💜
HOW DO YOU FEEL ABOUT YOUR ILLNESS, HEALTH AND QUALITY OF LIFE POST SURGERY?