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bad stoma placement
I had RC on July 20th. Pathology says that they got all of the cancer which is a good thing. Unfortunately, the surgeon decided to place the stoma very low on the right side due to a scar from a previous hernia surgery. The stoma nurse marked a spot much higher but he chose not to place it there. Now the problem is that since it is in the groin area, with lots of skin folds, it has been almost impossible to get a Urosotomy pouch to stay sealed for more that a day and sometimes it needs to be changed 2-3 times a day. Because of the location it is impossible for me to see well enough to change by myself even with a mirror. This requires someone to be near to change it when it leaks. I went from a seemingly health, except for cancer, individual who walked 20 to 30 miles each week to someone who is now afraid to leave the house for fear of a leak. We take supplies with us when we do go out but what can you do when you in a restaurant or movie theater and it leaks? You can’t just lay down there and change it. I am hoping someone out there has had a similar situation and has found a solution. I am very happy that they got the cancer but the post surgery situation makes me very upset.
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8 Replies
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I did look at that but it seems to me that it had a lot of problems associated with it like having to use a catheter to empty the internal pouch. So I decided to go with the pouch (ileal) diversion.
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May I ask if you ever considered an Indiana Pouch? We are trying to decide.
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I empty mine every 30 to 45 minutes depending on how much I drink.
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Ok that’s not too bad. Thank you for sharing. Can I ask how about many times you feel you need to empty pouch a day based on only a quarter full?
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We have Medicare with a Kaiser Permanente Medicare advantage supplement. Medicare pays 80% and Kaiser pays 80% of the difference. The rest is our responsibility.
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Wow, it is good to hear you are doing well. It seems holster is the go to place for accessories. Does insurance cover cost of bags?
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I am doing pretty well. We finally found a pouch that seems to work. It is a Hollister convex one piece. Everyone is different so may take some trial and error to come up with a good fit. My stoma placement is both good and bad. It is good that I can wear jeans and a belt because it is low on my abdomin but the bad is that to wear some shorts or swimsuit it may stick out the bottom. I haven’t tried the leg bag yet but if I go to a movie or on a road trip I may try it out. Hope your Mother’s surgery goes well. It is a big life change but it is manageable.
Best Wishes,Harry
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Hi there,
I am reading your post as my mother’s pending RC awaits. I do hope you found a solution to this problem. I read switching different bags helps. I would love to hear how you are doing.
Be well
AnnMarie
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