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I had colon cancer and lost my entire large intestine and rectum. I have a bag for two years. My hospital provided psychological counselling for free. Cancer and chemotherapy changes the chemicals in your brain. Medication and counselling made me feel good again. Because my mother has had a bag for 45 years, I couldn't feel sorry for myself but grateful to be alive. Plus I have the option to have my ileostomy reversed, my mother didn't. Now she is 92 years old, I am 66. But now I worry about what life will be like after the reversal and want to talk to people about how my life will change. I cope very well with the bag but I fear that after the reversal I will always need to be close to a toilet. Some say it took years for the "J" pouch (false rectum) to stretch and hold large amounts of waste. Some say the best to expect is bowel movements 10 times a day. Are they evenly spaced throughout the day? Do they occur shortly after eating? Will I awake in the middle of the night? How many times? I talked to people who had ulcerated colons and also had the large intestine and rectum removed. They are different. They had to go to the bathroom 30 times a day before surgery. Now they only go 10 times a day. For them, this is an improvement in the quality of their life. For me, going to the bathroom 10 times a day would be a hardship because I retired last year and my wife and I want to travel the back roads of the USA. I fear that the only way I could do that is to have a motorhome so I have a toilet with me all the time. With my bag, it would be easier and can not decide whether to keep my bag or reverse the ileostomy. Can I help you with answers to your questions? Can you help me with my questions? With love and best wishes to all. Frank

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I have Chrohn's disease and I wear a ileostomy bag. I've been having to wear a bag for about 17 months now. I had my entire large intestine removed. I'm getting the opportunity to get a reversal this month and I am so excited. Before the bag, I lost control of my bowels and I was going all of the time. When I started taking Remicade injections, I was going to the bathroom about 20 to 30 times a day. It finally got better, but I still ended up wearing a bag. I am able to eat everything now, but things may change afterwards. I wasn't able to eat dairy products before and I can now. Hopefully, that won't change. I am hoping for the best.
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I had my ileostomy reversal in November 2011. I am still going to the bathroom multiple times plus wake up all through the night to go to the bathroom. I wished I would have not had the reversal done. I was getting used to the bag and could go anywhere I wanted to in regards to restaurants, traveling, etc. I had my large intestine removed and have a small amount of my intestine/rectum left. It has been six months and I am still hoping for a difference but have not seen any improvement. If someone has a solution, please let me know.
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