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My name is Susan. I am a 64 year old female. I was a normal happy healthy teenager until I turned 15 years old. Well it began, I was suddenly diagnosed with ulcerative colitis after a few months of very severe illness that came out of nowhere. To say it rocked my world is an understatement. In 1970 not as much was known about ostomies and the supplies needed. As a 15 year old having an ostomy was the worst thing I could think of at that time. I had never been sick at all. My case was so severe and came on so fast that I had no choice if I wanted to live. I didn’t look at it as saving my life back then. It took some years to accept what this all meant. After going from 5’5” and 125 lbs I was a mere 75 lbs and had a bag on my abdomen that collected my waste. All I could think was WTH IS ALL THIS. After getting addicted to pain killers (it was 1970) and fighting through that for at least 15 years. I am healthy and happy and grateful. I had a regular (Brooke) ileostomy for 13 years and didn’t handle it very well and had multiple obstructions and surgeries. I had waited 13 years to finally get the Koch Pouch which wasn’t done hardly at all in the US until then. My Koch Pouch (continent ileostomy) has been a life changer FOR ME. I was able to function much better than before. Some people adjust to their (regular) ileostomy just fine and live good lives. I didn’t. Getting the internal pouch when I was 27 years old helped me very much. The Koch Pouch has its problems but for me it has been mostly a success for 30 plus years. The worst part I suppose is emptying my pouch through a special catheter in a public bathroom. I almost always need to add water through the catheter to get my pouch to empty. That can be a problem. I have learned to carry a special 12 oz bottle with lock tip in my purse. It’s only a problem when I need more water from outside of the stall that I’m half dressed in...but most of y’all know the public bathroom issues that we all face. I still have to wear a stoma cap over the stoma due to normal mucous. The other thing is I wish I could find a catheter larger than 34 fr. and with larger holes in it to make for an easier or faster exit. I haven’t found one as of now. I don’t think there are many places doing this Koch pouch any longer but there are a few. They are doing a newer type pouch if you still have your rectum and sphincter muscle intact. It’s an ileoanal pouch, (j or s pouch), I think. I believe it’s the newest internal pouch being done. So investigate all you can if you are going to have surgery for any ostomy. Just remember they all have their own set of problems as well as the regular ileostomy. There are often alternatives to explore. So here we are in 2020 and life goes on as an ostomate. I’m healthy and happy and getting through this pandemic (covid19) that we all are experiencing. If anyone has any questions about the Koch pouch I would be happy to answer. The best advice I can give to anyone getting any type of ostomy is to get a lot of information, medical advice and get help if needed with the mental process of such a life changing surgery and circumstance. Just know that like everything in life it’s your outlook and attitude that will help you the most. I tell myself that each day.
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Hi. I have only had my ileostomy since October 7th 2021. I would...
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