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BEBARB149's Photo BEBARB149 SparkPoints: (45,175)
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5/5/14 9:21 A

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Thanks for the reply. The surgeon I'm seeing is a good general surgeon, and he listens to me. I just don't think he is up on the latest techniques for abdominal surgery. Also, I think I've had so many bad experiences with doctors not listening to me and having to get really badly ill before getting any help that I'm afraid to go hunting for a new surgeon! I wish I could come there and see your doctor, too.

Achieve success in any area of life by identifying the optimum strategies and repeating them until they become habit - Charles Givens


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BRAVELUTE's Photo BRAVELUTE SparkPoints: (78,732)
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5/4/14 10:17 P

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Hi, SL. I haven't had experience with any part of what you are dealing with or looking at. However, I HAVE had my share of strange things with doctors and surgeons and have learned the value of asking those difficult questions, and looking until I find one whose opinion I trust.

I wish you could come here. Dr. Frattini is top of the line. I'd trust anything he told me to do.

I hope you can find a doctor to help you, one that you would trust with every decision.

PS, sorry I've not been active enough to see your post til now. Good luck!!

Edited by: BRAVELUTE at: 5/4/2014 (22:17)
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BEBARB149's Photo BEBARB149 SparkPoints: (45,175)
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4/17/14 12:12 P

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I see that no one has posted here for some time but am looking for other's experiences with an ostomy problem to help me decide what to do. I have a large hernia. It's my third. The surgeon that did my ileostomy wasn't that experienced or up on the latest technique and didn't put in mesh at the time. Then he still didn't use mesh for the first hernia repair, and, because I was afraid of having a reaction to the mesh, only put in as little as he could get away with during the second hernia operation.

Now I need to have a third repair and he's saying he wants to use a technique he's unfamiliar with and will call on another surgeon to help with it. I suspect (or hope) he's talking about the Sugarbaker technique and he doesn't do laparoscopic surgery so I'd guess he means the open one. We haven't gotten into a real discussion yet and he's not the most forthcoming person I know. But even the Sugarbaker technique isn't 100%.

I watched a lecture by a surgeon who apparently does this surgery often on YouTube and she made it sound like if you had the take down and got a J pouch the hernias are no longer a problem. Does anyone have a J pouch or any knowledge of outcomes and hernia problems after getting one? It's been 2 1/2 years since my surgery. I know the longer you wait the less chance of a good outcome.

Achieve success in any area of life by identifying the optimum strategies and repeating them until they become habit - Charles Givens


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BRAVELUTE's Photo BRAVELUTE SparkPoints: (78,732)
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8/3/13 4:29 P

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OstomySecrets has recently hooked up with Convatec. At our last support meeting a rep from both companies presented. The best thing since sliced bread was a spray-on instant adhesive release from OstomySecrets. You spray it on, and the pouch releases instantly, and as I understand it, no adhesive left on your skin to have to rub off with adhesive wipes. No more pulling off skin if you need to remove your adhesive or tape before it is ready to remove!!



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NELLIEC's Photo NELLIEC Posts: 36,969
10/27/12 11:47 P

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I guess website info would be good so I can check it out. I am just glad that I only have to change twice a week now. The duct tape isn't that hard to remove.

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For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline.
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BRAVELUTE's Photo BRAVELUTE SparkPoints: (78,732)
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10/27/12 10:25 P

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Have you tried Cymed one piece? That's what worked for me when I had a canal that ran from the first site to my belly button. And they are so easy to remove. I can't imagine removing duct tape.

Let me know if you want website or product info.

Sue

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NELLIEC's Photo NELLIEC Posts: 36,969
10/27/12 9:01 P

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I had a colostomy many years ago and then had a take down operation. Problems continued and I now have an ileostomy. My health has improved considerably since then. The tissue was analyzed when I had the ileostomy and I had precancerous cells. I do have a large scar (not as big as after the take down) near my stoma which has caused problems with getting the right appliance so I didn't have to change it daily. I finally found one that lasts -- with the help of duct tape! emoticon

I would be glad to help people.

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2 Timothy 1: 7
For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline.
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Leader of DNA -Diabetes, Nutrition & ACTION team

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BRAVELUTE's Photo BRAVELUTE SparkPoints: (78,732)
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10/27/12 3:00 P

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Hi, I've had 2 colostomies. The first Christmas 2008, the second May 2009. Things were rough for a while with the first, but the second has given me back my life and there are times when I forget it's there. Yes, I am forgetful. I like to blame that on chemotherapy that went on for 4 years.

I have had beautiful PET scans ever since the 12/2008 surgery. And I'm putting all that worry about whether the cancer will return a third time down the drain.

I am a certified visitor with my local ostomy association.

If I can help you in any way, I'd be delighted. If you'd like to contact me privately, you can do that through Spark Mail. You might need to make me a friend on my Spark Page in order to send a private message.

But otherwise, you are welcome to post less personal questions/concerns right here on our team page.

Just click on the "Send Private Message" link to the left under my picture.

Edited by: BRAVELUTE at: 8/3/2013 (16:30)
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SAGELADY2's Photo SAGELADY2 Posts: 406
10/27/12 12:12 P

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Would you like to be a supporter for those new ostomates who would like answers to the issues we've all dealt with? We would like to set up a way to put people in contact with you so that they can ask questions privately and not feel embarrased about it.

If you are willing to volunteer to help another ostomate along the road to wholeness, post your reply below.

If you are a SP member wanting assistance with something you can click on any member who has designated themselves as willing to give support and ask away.

Oh, I am willing to give my 2 cents as well. :-)

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