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I have had my pouch since Aug. of 2004. Overall, it has been good despite having chronic pouchitis and the occasional bout of cuffitis. One of my biggest fears was becoming immune to my pouchitis treatment (500 mg Cipro. a day,) the one I did not think of happened. Canasa is giving me an allergic reaction. I am now in a cuffitis flare and have an appointment to see my surgeon on Monday. He, not a GI, manages my pouch. Of course, I've been searching all the cuffitis threads and have gotten myself into a tizzy. There are two things I am incredibly thankful for, however. This site is irreplacable with the first hand information and Jan, the expert. Second, I realize how lucky I am to have an involved, expert doc to manage my pouch. There are so many people on here who do not feel confident with their maintenance. I am glad I have someone to trust. Those two things help, but I remain scared, scared I will need more surgery or more drugs or both. Scared that I will have 24/7 pain in my rear. Scared that the nightime incontinence and fear of getting too far from the toilet will become a way of life. Scared of that damn bad that I hated so much. 

This probably needed to be posted in "rant and rave" instead, but I thought I had a question. As I wrote, I realized I am just scared.

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Hello, KTA. It is normal to feel scared about the what-ifs. Everyone feels that way at some point. As long as you feel comfortable with your doctor and feel you are in good hands, you should be okay. My surgeon looks after my pouch issues, not my Gastroenterologist, although they are connected by written reports along with my family doctor. Sometimes reading things on the Internet is overwhelming. You look for the worst-case scenario. When I was diagnosed I read everything, but knew I had to stop. It was causing too much unnecessary stress and energy drain thinking of things that might never happen. This depletes your energy and you might not make good decisions. If something unexpected happens you'll deal with it then. Try not to let fear or anxiety take over. 

It's natural to be afraid of the possibilities. But, just know that the unknown is generally more frightening than the reality. You can survive failure of medicine. You simply just move on to the next thing. I've lost track of all the meds I've used. Even if more surgery is in your future, you'll survive that.

I always feel better once I know there's a plan!

Jan

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