Patient Story: Ileostomy Since 1994

By John

I have had an ileostomy since 1994. It is bellow the belt line. I have found that my stomach was never flat after surgery. I find that a flange with a very elastic adhesive is very useful. Some makes are more rigid and hard to get to seal. Of all the brands I have tried, Hollister is the one I use as it is my favorite. Since my stomach has bulged in the centre, I find it difficult to wear clothes that allow me to wear shirts that are not tucked in without showing the bulge. I would appreciate any suggestions you have! I’ll read the comments section below in case you share it there.

I have lived with this for almost 21 years and am well conditioned and have no problems other than dress. I was never was given diet instructions. I ate things like spaghetti sauce with tomatoes and spices - a total no no. I was on prednisone for 2 years and my head was the size of a watermelon. I could hardly walk. My co-workers felt I would never be back. They were wrong. I had many productive years after surgery.

I had no support at home as my wife did not want to hear about my illness. My surgery took 5 hours at one of Toronto's top hospitals.

Before surgery I was bleeding to a point where I needed blood transfusions. I finally went to the surgeon and said, “Give me back my life,” and he did.

Now I have found a wonderful woman who is totally supportive.

I am careful - no nuts. I blocked twice - that is painful. You must chew everything totally. I never eat broccoli or cabbage because of gas.

Nothing stops me now. We travel (easy if you prepare). Always have extra supplies with you. Most important pay no attention to those who are negative. Enjoy your life it is precious. I have learned many tricks over the years for anyone who has questions. I am here if you are worried (don't be).

Patient story: Eric from VeganOstomy.ca

An important note for those who have had surgery: drink…and then drink more. You dehydrate very easily so liquid is important. I did not follow my own rule and dehydrated to a point that my kidneys shut down. I woke up in intensive care with tubes in my neck for 5 days. They told me it was almost too late when I got there. If your mouth is dry you are already dehydrated. Drink water is best but anything works. I have been proven wrong that tea dehydrates.

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