Disability

14 years 8 months ago #26888 by Silk
Replied by Silk on topic Disability
HI,

I have had a neobladder for a year now and it "flopped" to the side and I am not able to void at all.

I self cath every 2 1/2 hours. You can use baby wipes to prep yourself before cathing and get a disposal cath for one time use only and keep the jell in your purse.

I recently took a road trip and for the first time had to do all of this. It worked well.

I do not know if you can get disability, I work full time, cath. 3 times at work a day and do steps each time.

The most important "have a great attitude" and remember, you are not alone.

Silk

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14 years 8 months ago #26884 by Webs
Replied by Webs on topic Disability
Kelly Anne,

Sorry I have not written to you before. I have been out of town for a week. I am sorry to hear that your neo is not what you were hoping for. I to have a neo that is not continent. Not to the degree that yours is though. I know how hard it is and realize that yours is twice as bad as mine.

I wish that I had the magic answer, but I don't. I hope that you are successful in whatever you decide.

If you ever want to talk just let me know or email me. Sometimes it helps to know that you are not alone. (((Hugs)))

Webs

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14 years 8 months ago #26857 by Gracie
Replied by Gracie on topic Disability
Kelly Ann - Allsup has a website - www.allsup.com.

Also from what I know they (or an attorney) only get paid if they win the case for you. That eliminates the need for out of pocket expense on your part to retain them. But make sure you are comfortable with whoever you choose to represent you.

Gracie

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14 years 8 months ago #26850 by Melodie
Replied by Melodie on topic Disability
I was introduced to Allsup when I was recovering from chemo/RC...I was not able to get back to work in three months and therefore was required to file for long term disability...when that happen, ALLSUP contacted me...that was the first I had heard of them...they did seem professional and willing to work hard for the client but I was wanting to return to work.

The SS office did send me some paperwork but I didn't fill it out because as I said, I wanted to return to work and felt I could in due time. I will tell you the paperwork was very stringent in the wording...such as: Can you get out of bed on your own? How long does it take? Can you get dressed by yourself? How long does it take? etc.

Best of luck to you, dear. I know there are many out there who take advantage of the system, but in your situation, you certainly deserve to be classifed as "disabled". How in the world can they expect you to work if you are continually leaking??? :ohmy: Hugs, Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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14 years 8 months ago #26847 by Gracie
Replied by Gracie on topic Disability
Just to add to the confusion. I was told by my doctor that one can convert from a neobladder to an Indy depending on what was done in the original surgery. Dr. Konety said he has done several of these but each person's situation has to be evaluated individually.

I would think that the ileal conduit is an easier surgery - but this is a big decision that would have to be weighed.

Of course - as always - consult with an experienced, knowledgeable doctor at a major cancer center.

Gracie

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14 years 8 months ago #26842 by mmc
Replied by mmc on topic Disability
I was informed that you can't change a neobladder into an Indiana Pouch so sorry about that bad information.

As Pat said, get it changed to ileal conduit. That should eliminate the continence problems you have. No need to cath with an ileal and most people that have them are very happy with them and go on with their life without major problems.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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