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Can you tell me about Bladder replacement options

9 years 6 months ago #37349 by motomike
emr7888 wrote:

motomike wrote:

I’m sure our 13-year-old boy will want a slightly convex with a belt because of his activity level.


Mike- where do you get belts and convex bags? My 13yo just left the hospital this week with his new set up and the doctors gave him what THEY want him to have but we all know that isnt always the best setup. The belt sounds like a great idea and I would like to research it a bit more. Thanks.


EMR
Just out of surgery, It’s probably too soon to be thinking of this because the stoma area is still swollen and healing. The stoma will also adjust its size.
Mike recently posted a great background file that will be helpful.
http://www.coloplast.com/SiteCollectionDocuments/pdf/Guide_to_Ostomy_Adhesives.pdf
Once the surgery is done the Stoma Nurse becomes your major connection with suppliers, advice & treatment for soars & rash, etc. When you have time you might want to read our recent thread on “soars & rash”. I would bet that your 13 year old will experience these.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
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9 years 6 months ago #37348 by emr7888
motomike wrote:

I’m sure our 13-year-old boy will want a slightly convex with a belt because of his activity level.


Mike- where do you get belts and convex bags? My 13yo just left the hospital this week with his new set up and the doctors gave him what THEY want him to have but we all know that isnt always the best setup. The belt sounds like a great idea and I would like to research it a bit more. Thanks.
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9 years 6 months ago #37343 by dukel
Alan; just wanted to say, I'm happy you are doing so well. It sounds like you have a great attitude. Believe it or not i think that makes a huge difference in ones recovery. Hope all goes well.
Duke
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9 years 6 months ago #37342 by motomike
Yes, 3 or 4 days is great. There are ripples in the skin from surgery, Staples, etc and even swelling so right now 3 or 4 days. You probably should hold off on the showers for a while. I really over did it. I did sponge baths for months. I think I had what might be called stoma anxiety. It scared me. It looked like a piece of steak sticking out of my gut! I’ve modified my thinking now and decided it looks like a strawberry.
Because of the night tube drain I still sleep on a sofa. This forces me into a left side sleep & keeps tossing & turning to a minimum. I run my finger around the edge of the bag and can get a since that a leak might be developing. The longer wear bags with added features will come later after you are settling into a routine. I’m sure our 13-year-old boy will want a slightly convex with a belt because of his activity level. Your stoma nurse will guide you in this when the time comes. There are thousands of bags and special stuff. I’ve noticed suppliers advertising on TV now. They are anxious to give samples but wait till the swelling goes down then talk to stoma nurse (month or 2).

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
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9 years 6 months ago #37335 by jimswife
Edgepark has been very good for Jim's supplies. One word of caution is if you are on Medicare and need to return anything be sure to do it asap. By waiting a few weeks, Jim's order has gotten sort of split up. Now, he has a one month supply coming tomorrow and we will redo the order for supply management *doing 3 mos supplies* starting in May. By having supply management list it is very helpful and makes for fewer things to remember to order. Just a thought. I also LOVE Mike's humor. I alost agree that you have to make friends with your stoma as you will be together a looooong time. It takes practice and lots of patience. There may be a few leaks but it comes with the territory and will get better. That's the part to remember..IT WILL GET BETTER! So glad you are doing well!
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9 years 6 months ago #37330 by alanjay
Mike,

Thanks for the input. I will try that tomorrow when my staples and stints come out and it will be easier to get to the stoma. I was lucky, my only attempt to change my bag was in the hospital, it lasted for one emptying and then the leak but I figured what went wrong. I called in a nurse and he SLOWLY and patiently showed me how to do it correctly. So I got a good example. The next change was at home with a home health nurse. He went very fast but again, I was able to look and ask questions so I am comfortable when I screw it up tomorrow. He actually took an Eakin shield , ripped it in half and rolled it up into a piece of spaghetti, put it around the opening on the bag and it holds perfectly and he used no stomahesive. Go figure. For some reason I was told to change my bag every 3 - 4 days, no reason why. Do you know why? Could it be because I am new or because of the temperature here. I will be getting 20 bags and 10 eakin shields each month.
I finally had my first nighttime accident, the tube on my bag disconnected from my night collection bag , but I caught it quickly, It seems that the connector on my night bag and my ostomy bag have different size connectors. I was able to acquire the adaptor that was used in the hospital. I hope my new supplies will fit together better!!!!!

So far I must be truly lucky. While I took 2 days to finally get out of bed and my first walk fas from my bed to the hospital door, I was walking the whole floor by the next day. I was able to get into a private room within hours of getting onto the hospital floor and my wife was able to stay with me for 6 days in the hospital. I have been relativly pain free since the beginning.
My supplier is a mail order company called Edgepark. Their name was the first on a list of suppliers my hospital gave me and the first name my insurance company gave my when I called for a list suppliers that they work with.

Tank you for your humor, knowledge and friendship
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