I live in Florida USA and have been through what you're going through. I was sick with Crohn's for 7 years and was given a temporary ileostomy in 2006. I felt good for about
8 months, but then the disease flared up (even though I wasn't using my colon) and I started bleeding from the rectum. That was when I decided it was time to have my colon and rectum removed and make the ileostomy permanent.
Just like you, I had a hard time recovering from the ileostomy surgery. My stoma took 2 weeks to start working, and when it did, it was filling up a bag with liquid every hour. I became severely dehydrated and was in the hospital for 3 weeks. The proctocolectomy surgery went much better. Since I already had a stoma, I was out of the hospital in 4 days!
I could tell right away that I was disease-free, and it was the best feeling in the world! That was 4 years ago, and I couldn't be happier with the results. I never had Crohn's in the small intestine, and my doctor says that chances are really good that it will never show up there. So far so good!
Now that I'm healthy again, I have lots of energy and can work full time, exercise, travel, go to the beach every weekend, and live a normal, happy life. I eat whatever I want and do not take any medicine. Having a proctocolectomy was the best decision I've ever made... well, except for marrying my husband!
He has been an amazing support through all of this, especially since I got diagnosed with Crohn's only one year into our marriage.
I'm so glad your friend told you about
this site. Everyone is so kind and supportive here. I wish I would have known about
it before I had any of my surgeries. Maybe I wouldn't have waited so long had I met people who had been through it and were happy and healthy.
Please continue to ask any questions you may have. We're all here to help!
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.