This is the first time I have done this. I am having to have an ileostomy due to diverticular disease for which I had my sigmoid colon removed and my bowel reconnected, but the disease has spread through my large bowel. And this is worrying me. Can anyone give me some help?
wheelie
Feb 28, 2011 8:42 pm
Past Member
Feb 28, 2011 10:30 pm
When I first found out I was to have a permanent ileostomy, my reaction was "no way!" But then, after becoming quite ill, anemic, down to about 90 lb, constantly in pain, and my gastroenterologist informing me that if I didn't have the operation, I would have kidney failure and the possibility of future rectal cancer, I thought, "Well, let's give it a try!"
Did some "Google" research (this is not the only site to find info) and came into contact with a fellow Perth girl the same age as me (44) who had had an ileo since the age of 10, and through heaps of emails, she assured me what to expect and that it was all going to be fine.
I finally know what it is to be healthy, and actually feel better than I did 20 years ago when I was first diagnosed with Crohn's disease (which I basically feel has buggered off for good!).
Had the op in 2008 (had the "lot" taken out) and can honestly say it is the best thing I ever did. Since then, no medication needed, no pain, and no problems with learning to live with my new attachment!
Have done things and gone places I never imagined I would be able to again. It's all good!
Cheers,
Jo
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I began my Urostomy life February 27th, 2023...a month and a half ago. I stumbled upon this site from another on Youtube and website called VeganOstomy and between that site and this one, most of my fear and worry of not having any answers other than calling the Dr's office recording menu and hoping to hear back in the next day or two for an answer to leaks, skin irritations etc, or just feeling alone and the "no one understands" thoughts I had to look forward to in my mind were all put to rest by these two websites and the community here at MaO!! I have been here for a few weeks now, and the help and support offered by the members here is just amazing!! The information and support is absolutely priceless for anyone recently out of their surgery and have tons of questions or had it for years...sit down...have a good read and you will see for yourself!!
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Past Member
Mar 03, 2011 5:38 am
I too had a really hard time when I was given no other choice, if I wanted to live, than to have an ileostomy! I was lucky, you could say... family members have and had Crohn's disease and an ileostomy! Not that I knew anything at such a young age! I was 22 years old with a new husband, a newborn baby, and a new ostomy! Wow! I still can't believe I made it through those times! ...But you do... You ask questions to doctors, to nurses, to anyone that will listen! Education is the key; learn every little thing to know about your disease! Get to know your body and what you can eat and what you can't! Drink, drink, and then drink some more! Talk to someone, anyone, about what you're feeling! And if you're feeling depressed, tell your doctors and they can lead you to the right people! If you need any help with anything, I'm a nurse and an ostomate, so go ahead and ask anything!