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So Annoyed

1 month 2 weeks ago #58083 by AMG
Hi Cynthia,

My URO did prescribe the protocol but at the beginning I was in the bathroom every hour or sooner. It was awful not sleeping and spending all my time doing laundry, cleaning up my messes, and desperately trying to make it work. The problem for me was that after being removed from most of the tubes post surgery, I still couldn't use a catheter because it just wouldn't go in. After being told by a PA that I should try for 5 minutes each time, I lost my lid! The surgeon promptly fixed the problem by inserting a cath for 2 weeks to create the scar tissue for future catheterizing.
At my 3 month follow-up, I ranted at the URO and let him know that the teaching hospital needed to help patients that couldn't help themselves( arming them with lots of information and support). At my 6 month, the URO told me he had taken those words to heart and at my last appt. on Monday he let me know there is now a bladder support group at this hospital. I plan on attending the next session to see if it is all hype or something BC patients and survivors will really benefit from. If not my mouth starts opening again lol.
Imerman's Angels and Friends for Life Cancer Support set me up with individual mentors that had very similar surgeries. Those phone calls saved me from going to an awfully dark place. I will forever being in their debt.
AMG
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1 month 2 weeks ago #58082 by AMG
Grandma to 3,

Attutide wins the game! I wish you a hassle free recovery.

AMG

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1 month 2 weeks ago #58078 by Cynthia
Lee lee and AMG,

First AMG I know some Uro’s use a training protocol following RC with both the Indiana and the Neo. Did your Uro have you use a training protocol? The one they had me do for my Indiana once I started catheterizing was every 2hrs the first week, 2 1/2 the second and so on until I could go 4 hrs. This was done I was told because you have to stretch the pouch when new. It was kind of like having a new baby for a while but I never had leakage.

Lee lee,

With my Indiana I wear what I wish form fitting or not, the diversion itself does not slow me down a bit. Lee you will adjust to whatever diversion you get and none are going to be without a learning curve and all have there pros and cons, only you know what your needs and sensitivity’s are. For me it came down to body image and the fact that I cant even wear a band aide without it taking the skin off if I have it on for more than an hour or so. I know there are non allergic tapes but I didn’t want to chance it. I would suggest you take a piece of paper and make two lists on for the bag another for the Indiana and do pros and cons, that might help clarify your thinking. Also even though most of us get the diversion we ask for there is a small chance that they might not be able to do it given your individual situation. Learn as much as you can and know that you will adjust as millions of others have and that you are not losing a bladder you are just choosing life.
Ask all your questions we are here to answer them if we can.

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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1 month 2 weeks ago #58070 by leelee
Hi Cynthia,

Wow you are amazing lady! ... I admire you. So it sounds to me as if you tried TMT for a while before the decision to do RC was made? I am considering all options at this point and as crazy as it sounds, one day I feel I'm swaying one direction and the next day the other direction. I am terrified to make the wrong choice. A little about myself --I am 53 years old and a very active ,enthusiatic elementary school PE teacher. I am very petite ..4 foot 8 and 105 pds. and I tend to think the bag would not easily be concealed on my small frame? your thoughts? . (I typically wear form fitted clothes, not loose or baggy). Any more information you are willing to share and think would help me make the best choice/decision for me would be welcomed and greatly appreciated. I hope you had a wonderful time in Florida. I was born in Boston, grew up in Miami and live in Atlanta now. Be safe and THANK YOU !!!

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1 month 2 weeks ago #58069 by leelee
AMG

Thank you so much for your feedback. I am learning, weighing all the pros and cons & processing all this information and will soon be ready to make my decision. THANK YOU !!!!!

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1 month 2 weeks ago #58068 by Grandmato3
Well I finally had my surgery on the 1st of August. After 10 hours I woke up to having a bag. Disappointed to say the least but am thankful I am alive and cancer free. Getting adjusted to my new “bladder” and I am getting the feeling that once is all said and done I will adjust like so many other people.

I have not actually talked to the doctor who performed my surgery. Am interested to know why it took 5 hours longer than he had planned.

I have been up and walking today without much pain. Waiting to eat real food soon. This liquid diet is for the birds.

Hope everyone who is going through this process has good results and gets back to living rapidly. I plan on enjoying the rest of my life, bag and all!

Grandma to 3
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