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Can you tell me about Bladder replacement options

9 years 6 months ago #37325 by motomike
Alan, Get your supplier squared away.If you are like me you will need lots of bags at first! Don't worry- it gets better! Here is my one man procedure which you can change around any way to suit you:
Some penis’ leak, mine did not.
Now the bag was a completely different story. Shortly after being kicked out of the hospital, the bag treated me to a 3 am puddle in the bed. I felt like a 5 year old kid, was extremely upset, and called the bag and stoma some very unkind things! I was convinced that the stoma was invented to ruin my life and make me miserable. In looking back these 10 months later, I realize this was absolutely the wrong attitude. The stoma, the bag & I had to work together as a team. That’s the only way it will work.
1. Stoma nurse will demonstrate procedures BUT if you are lying flat in bed you cannot see anything so insist that it be explained as it is being done.

2. Get the partial absorbent pads to go under you bed sheet. I only used 3 or 4. Now they are only there as a precautionary thing. I have not had a night bag leak in several months.

3. Prepare your bag cut to size and with the barrier ring. Set that aside.

4.I think it was Holly (one of our group) who recently pointed out that this is a good time to enjoy a long hot shower. Feels great and you can easily clean around the stoma too.

5. The stoma has a habit of squirting as soon as you have the area clean & dry. It is all right to curse it out but it won’t do a bit of good. I started using a clean dry wash cloth on the stoma to absorb that moisture but now I tear a paper towel into 3 strips and loosely roll them into coils that just fit over the stoma (if one end gets too wet-I flip it to the other dry end)

6. Take the paper towel away from the stoma and quickly place the bag over the stoma. Press & Hold it until the adhesive has warmed up to sticking temp.

I know it may seem that 3 or 4 hands might be better but most of us are familiar enough with this that it becomes second nature after a few months.
After the swelling has gone down & your stoma has settled in to being one size you might want to experiment with some of the specialty exotic bags and associated equipment. I’ve moved to a slightly convex bag with a belt. It really gives me a more secure feel and lasts 6 or 7 days leakfree.

Cheers!
Congratulations
You are now in the very limited membership of
BAGBUDDIES of America

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 #37322 by alanjay
Dear Jimswife,

Your information is exactly what I was looking for. Glad to hear that I will not leak forever, I can live with depends, I have even cut down then amount I need to use daily. I have not gotten my first order of supplies yet so i am a bit limited in what i have right now. i have 5 days for supplies and 2 changes available. I WILL SURVIVE. I thank you for your friendship and help
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9 years 6 months ago #37321 by alanjay
Thank you bill, I will definitely keep in contact with all of the friends I have made here. I try not to vent too much, I just have a lot to learn
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9 years 6 months ago #37315 by jimswife
Alan, sorry to read of the spread but life does go on and you will do just fine. The penis leaking was something that caused Jim a lot of angst at first. No one had mentioned that to him and as a result we were unprepared when he got home. He thought that this was going to last for forever. It did not, it took almost 6 weeks give or take to heal over the urethra area. Now, no problem. Since Jim is a large man he found the depends that have tabs on the sides fit best. So, that is a suggestion.

As far as the leaking from appliance goes, try using some Eakins seals on it. That was the trick that did it for jim. At first it was blood, sweat and tears almost to change the appliance and took forever. With practice it takes hardly any time at all. Always be sure to clean the area very well Jim has had one outbreak of a edge of the flange skin break and when that happened we did "caking" which your ostomy nurse should be able to help you with. It's easy to do and really does the trick. It is taking the powder and dabbing it with the skin prep, adding more powder and then dabbing again with skin prep to "cake" the powder on the skin. It really worked well for jim and his skin break healed within 4 days. It does take some time to find just the right flange etc that works for you. Be patient. Jim has found the softer, nutra convetec 5x5 works best for him for flange. It covers more skin area and really sticks well. Hope this is helpful and so glad to hear from you!
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9 years 6 months ago #37311 by BillM
Welcome Back Alan!

New beginnings for sure. Sorry to hear that the cancer had spread to the point of no return for a Neo. Have you asked the visiting nurse what the leakage is from? If not, I’m sure your doctor would know as he doesn’t want any infections setting in right now. Hows the tummy doing? That was the tough one for me since I like to eat and it made Thanks Giving bittersweet, all that food and small meals only. But from what I understand about the IC they don’t have to use as much of the ileum, so recover is a little faster?

Please keep us in the loop even if it’s for venting, and keep getting better! For recovery I think you'll find so much information here from everyone that will make it easier in the long run.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
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9 years 6 months ago #37310 by alanjay
MY LIFE IS OVER - MY LIFE HAS JUST BEGUN. Went into surgery on Mar 30 expecting a neobladder. came out of surgery with an ileal conduit. Damn that cancer, it moved to the urethra. I have no problems with the bag other than having to empty it every 2 hours, like clockwork. I do have a night bag. I havbe only attempted to change the ostomy bag one time with not so good results, it leaked in 2 hours. In the hospital a nurse fixed it for me and I watched carefully what he did. At home my insurance company is paying for a home health nurse and he changed it the last time. He took much less time and effort and was done in less that 10 min and the bag is holding well.
I do have a question, I started leaking from my penis, I had to start wearing adult diapers. Any idea how long this should last and what the cause of it is?
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