Hi, Lynn! I saw your post and just had to tell you my experiences. I do have an illeostomy! I have Crohn's disease and my entire colon was so ulcerated that I either had to have the surgery or die. Those were my two choices because I was bleeding constantly.
I fought that decision. I told myself I would never have that type of surgery but when push came to shove, I did it. You know what? It was the best thing I have done for myself with my health conditions! Honestly.
The illeostomy hasn't stopped me from living. Before surgery, I couldn't be more than a few yards from the bathroom. Once I had the surgery, I finally had freedom and had my life back! I now could take my kids places I couldn't before the surgery. My health was far better, too. And, if you get the stomach flu, you still can go to the grocery!
I have a pool and live in it. No problems with the illeostomy. I have snorkled, parasailed, danced, stood on a glacier, just anything I want to do and the illeostomy has not caused me one moment's problem. I've had this for 23 years, too. It saved my life and I'm so happy I went through with it.
Oh, the appliances are easy to use and change. They have come a long way since my grandmother had her illeostomy. They had rubber bags that she had to wash out and dry. How horrible! But the appliances today are lightweight and disposable. Doesn't get any easier than that!
So, don't dispair. Just think about not having all that pain. It's really great! Please look at this surgery as a blessing because it truly is. I know it's hard to wrap your mind around that but I am living proof that an illeostomy is not only a life saver and a pain reliever, but also a life "giver". Just think how great it will be to finally get on with life!
Are there any teaching hospitals near you? I was fortunate to live in Cleveland at the time and went to the Cleveland Clinic. But there are other wonderful teaching hospitals all around the country. I now live in Tampa and Tampa General is highly rated and that's where I head when I have problems. It, too, is a teaching hospital. It looks like Memorial University Medical Center in Savannah would be a good choice for you. That's probably where your doctor is located. I do see that you are living in Alabama...according to your profile. If so, the University of Alabama Medical Center is outstanding. My father had open heart surgery there years ago so that's another consideration.
If you want to ask questions don't hesitate to email me. Your doctors know what is best and you need to listen. I wasn't listening at all at first. I was hospitalized for five weeks because I wasn't listening and constantly needed blood transfusions! I told the gastro NO but he kept coming back and finally I did listen and it was the best thing I could do for myself and would do it all over again.