New user with bag since he was 9

Patricia

13 years 8 months ago #33346 by Patricia

Replied by Patricia on topic New user with bag since he was 9

Joey..thats one unfair nasty disease for children and it usually hits ones under 10 yrs of age. I'm so glad for your success story and it has to be one of the best ones as they've come a long way in 20yrs..not far enough. Children should not be allowed to get any kind of sickness.
pat

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jmco12
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13 years 8 months ago #33344 by jmco12

Replied by jmco12 on topic New user with bag since he was 9

Thanks everyone, So, I was nine when I was diagnosed with Rhabdomyasarcoma(bladder cancer) I had my bladder and prostate removed and was given a urostomy and 18 months chemo. which were both successful. I had to have a corrective follow-up in which I chose an illeal loop urostomy rather than self-cath. I had an interesting childhood and even more interesting teen years. Long story short(for now)I made it and am happy and healthy. I didn't do it alone and in realizing that fact I am offering my support to anyone who needs it.

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Melodie
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13 years 8 months ago #33342 by Melodie

Replied by Melodie on topic New user with bag since he was 9

Yes, welcome, Joey. We would love to hear your story. I have an Indy pouch and have adjusted extremely well but I'm nearing 60 and had 56 years of use from the God given bladder. I can't imagine having to make that kind of adjustment with the intestines at age 9 but apparently you have done very well. I wait to hear the details. Please share. I'm sure you will be an inspiration to us all.

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

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Patricia

13 years 8 months ago #33333 by Patricia

Replied by Patricia on topic New user with bag since he was 9

Hi Joey..and WElcome and i'd love to hear your story. I wonder if its similar to my little neighbor girl who was born with spina bifida ..quite severe. Things have come a long way...she just got rid of her indwelling cath and all the ensuing infections because of it and got an Indiana Pouch with a naval stoma which she can self cath herself very easily...and she's just amazing. She recovered a whole lot faster than i did!
Pat

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Cynthia
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13 years 8 months ago #33330 by Cynthia

Replied by Cynthia on topic New user with bag since he was 9

Re:New bag man needs support. 38 Minutes ago

So, I just found this site, I guess I knew that something like this was here but... I got my bag when I was 9, I'm now 33 and well used to it, but it was hard during the teen years. I'm trying to get a social work dgree and work with cancer patients, so I'm familiarizing myself with sites like this. I noticed that it has been a while since anyone has posted here, but I thought I would give it a shot. I would be happy to go into more detail about "my story" if anyone is interested, but for now just know that it's not as bad as it seems at first, and just like so many other things our bodies AND minds will get used to almost anything. Whether you like it or not, you just got another friend! Hope to talk to you soon, Joey

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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Cynthia
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13 years 8 months ago #33329 by Cynthia

New user with bag since he was 9 was created by Cynthia

Welcome I do not know if you lost your bladder to cancer or not but you are welcome here either way. I am moving your post to a new thread so it will get more attention. If you need any help just email me by clicking on contact us in the main menu and I will try to help.

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New user with bag since he was 9

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