I Did Not Know That

[Greg]

Having become the proud new owner/operator of an ileal conduit in the past three weeks, having traded in my neobladder for a newer model, I have discovered some things I did not previously know:

The supplies (barriers, pouches, cleansers, etc.) can cost somewhere in the range of a couple of thousand dollars per year, depending on how often the pouch is changed, what type of pouch is used, etc.

Where I live in Ontario, the government will provide a grant of $600 per year to help offset costs. The patient must bear the additional costs (hopefully his/her employer’s group medical coverage will assist).

Stoma size shrinks over the first 6 to 8 weeks.

There are no nerve endings in the stoma so it does not hurt when touched even though it looks like it should.

Now you know. Me too!

Greg

[EddieM]

Thanks for that Greg!

I didn’t know any of those facts.

How does one apply for the governance grant?

Ed

[Greg]

Ed, there is a specific form that the doctor can provide. He has to sign it to confirm eligibility.

[Gord]

Just a note to those with neobladders, you can also receive this $600 a year grant. I filled in the paperwork while I was in hospital for my surgery last June, and am now receiving the grant – $300 twice a year. The stoma nurse saw me once or twice, and gave me the paperwork and encouraged me to apply. Glad I did!

[Rick B]

Thanks Greg for that info. Hope you are doing well with your new “red” friend…have you come with a name yet…or did I miss that in another posting?

A General Q – would you or anyone know if the material costs are covered for seniors (65+) in Ontario or is the $600 claim per year the same for all.

[StephenW]

Just a note to those with neobladders, you can also receive this $600 a year grant. I filled in the paperwork while I was in hospital for my surgery last June, and am now receiving the grant – $300 twice a year. The stoma nurse saw me once or twice, and gave me the paperwork and encouraged me to apply. Glad I did!

I didn’t see anything on the Ontario government website about grants for people with neo-bladders. Do you have any additional information?

[Gord]

I never looked at the website, I just filled in the application that the stoma nurse gave me in the hospital. I clearly stated that I had a RC with a neobladder, and sent it in. Was not sure if I would get it. It does help cover the cost of continence supplies and so on.

Gord

[StephenW]

Thanks, Gord. I’ll talk to the nurses next followup.

Stephen

[Greg]

Also of note to those of you who are blessed with a neobladder, keep the receipts for your “undergarments” and pads and claim them as a medical expense on your income tax return. Of course, you want to pay every cent of tax that you owe, but not one cent more!

Greg

[Author]

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