I'm fourteen and have had Crohn's Disease in my colon since I was three. I have had medicine after medicine, and NOTHING has worked, and I've become steroid dependent. I was on methotrexate, which worked for a long time, but stopped, and if it doesn't work again, (we're trying it), I may have to have SURGERY to remove my colon. I've been doing a lot of research on this, and ileostomy stomas are DISGUSTING! They are SO ugly! I don't want to have that big ugly thing on my tummy, even if it DOES make me feel better! There's not even a guarantee that my Crohn's won't start to affect another part of my gastrointestinal tract after the surgery anyway. I'm so scared. I know that you can cover stomas and no one knows when you have them, but what about ME? What about when I'm dressing and undressing? Or bathing or showering? I just can't look at it every day. And to think it'll be on my own body! Hi there
I had my ileostomy surgery when I was 10 years old (I'm 41 now which means I've lived with my ileo for 31 years now - 32 years on January 8th, 2008. Mine was due to UC. Yes, a stoma isn't the prettiest thing to look at, but then again, neither is your anus :)
The thing is, that with time (as with anything), you do come to accept it (even though you might not think so right now), esp after you realise how much better your life is with a stoma. Everyone has some body part that they're not particularly fond of but they do learn to live with it. You will get used to seeing it everyday - you may not learn to like it but you will learn to accept it :) Besides which, how many people can say 'I've got guts - Want to see?' :)
You're right. It is hit and miss with crohns as to whether it goes on to affect another part of your body. I've known people that has happened to (but they've never regretted having their ostomy, despite it) but I've also known people with crohns who have had an ostomy for 30+ years without any further trouble. You have to decide whether it's a risk worth taking for the sake of your health (even though it's an issue, there's no point in worrying about vanity if you don't have your health and aren't able to enjoy your body anyway). The vast majority of people end up being thankful for their surgery (even if it only gives them remission for a little while) because it does mean that there is no more urgency in going to the loo, even if the crohns does flare up again. You no longer have to know where every loo in town is and hope you make it there on time. That's a BIG bonus.
If you're used to wearing low rise jeans or crop tops you'll probably no longer be able to wear them, but normal jeans and tops are fine (I used to wear the tightest jeans as a teenager and no one could tell I had a bag). It's a small price to pay to have your health back.
I go swimming every summer, have travelled the world - to the USA, UK, Thailand, Hong Kong, Singapore, and most of Australia (I'm an Aussie), ridden elephants and camels, been on roller coasters (the wilder the ride, the better!), been snorkelling, kayaking, rock climbing, etc all without a problem and without having to know where the nearest loo is.
It's natural to be scared, most people are. There are several ostomy message boards around full of people who were scared once, just like you. Upon reading their messages over time, you can see how they've gradually come to accept, and yes, even like their ostomy because of the life it's given back to them. You're not alone in what you're currently feeling. There are many many others who are/were your age with exactly the same feelings you're experiencing right now who have gone on to find out that having a stoma isn't the nightmare they were expecting it to be.
Good luck and know I've been there, done that and have the bag to prove it :)
PS. It's really not that big :) My brother is having one today. I am grateful that the Dr. is confident that he needs it...however, my brother is 67 years old. He is very strong and active, but this is part of surgery to save his life. In your case, it's a shame to have such a serious problem at such an early age, but you just have to bear it, because that's the way it is. Face your fear, accept what you can't change and move forward. I hope you do very well and thrive. You can, if you want to! Love to you. |
