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Can you tell me about Bladder replacement options

9 years 8 months ago #36117 by alanjay
Dear Babsiebob,

I want to thank you for the female perspective on the Ileal Pouch. I was wondering, as women are generally more concerned with how you look than most men are, how has the external pouch affected your clothing options.
The question is not sexist, I asked motomike the same question.
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9 years 8 months ago #36115 by alanjay

Just the voice I was looking for. I was hoping that someone with the Ileal Pouch would reply. I just have a few questions for you.
From what I read, the pouch is attached to your body, is that true.
Is the pouch above or below your belly button.
Do you have to cath or void as frequently as the others do, or is it just when the pouch fills up.
How has having an external pouch affected the way that you dress.
How does your insurance handle the necessary supplies, do you get all you need or is it limited aqnd you have to reuse your supplies.

I am also somewhat confused, you said you could write your name in the snow.. I thought with the Ileal Pouch that the Ureters are attached to the pouch and nothing come out of the penis. Or are you playing a joke on me and you do it by using your catheter.
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9 years 8 months ago #36113 by alanjay
:) Gracie,

Glad to hear some good news, your grandson as lead in the play.
Also thank you for being upfront and honest about your experiences. It looks like the training period for the Indiana Pouch and the Neo Bladder are quite similar. Both take a couple of months to adjust to, both require you to be regimented when you void yourself. I have about 3 months to decide on which replacement I will opt for. Glad there are people like you around to expplain thing to people like me.
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9 years 8 months ago #36092 by Babsiebob
I agree with motomike, I also have an ileal conduit with the external bag and I am very happy with it. I don't think I could have made it with one of the other two choices. I was so very sick after my surgery, I didn't know anything for days. Good luck with your recovery and things will get better

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good
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9 years 8 months ago #36091 by motomike
I got the ileal conduit (a stickon bag) last May and am finding it is a pretty serviceable method. It might not be quite as normal as the neo but I can still write my name in the snow. Everyone was saying great things about the neo and the Indiana pouch and I didn’t want the ileal left out. :)

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 9 months ago - 9 years 9 months ago #36043 by BillM
I’m glad Gracie explained the pouch. The neo has a very similar learning curve once the foley cath comes out; if you go with the neo you can start back up on your kegels before leaving the hospital. Instead of a catheter to drain, you have to rely on your own muscles and a diaper. The alarm clock and getting up is the same as with longer holding times during the learning process. Either way there will be a learning curve for your new bladder. And yes, the sleep deprivation is the same with a neo.

That first week with neo is a challenge, but time and patience goes a long way and it does get better.

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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