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Kara
08-04-2002, 10:46 AM
Sunday, August 4th, 2002

I don't even know I have a bladder anymore. I feel nothing down there where the old bladder used to be. I get some phantom urgency but it lasts for an hour or two and then goes away this has only happened 2 times. I feel like a child in at an amusement park, that just won the BIGGEST stuffed toy that exists and one hand holding some nice pink cotton candy! Now, I tread very slowly as we speak because as you all know, anything can happen and anything is possible, so I am being very cautious about telling everyone that I am IC free becuase there's a part of me that fears it will come back and there's a part of me that thinks it still exists, and yes I am seeing a therapist for these feelings and my Husband sees her too.
But as far as the past 3 weeks, I have no urgency, no frequency, no pain, and no retention pain.........sometimes I forget to chatheterize myself because I have no feeling down there. My Husband keeps reminding me to do it. As far as cathing myself, I feel nothing. My doc promised me that he would cut the nerves to my urethra so I would never feel any pain down there again, and he was right. I don't feel the catheter going in and I don't feel it inside of my new bladder. In fact, I know I am in the right spot when I can't feel it going in.

I still have the regular old surgery pain but I am not taking pain meds for it. I am trying to just rest and let my body heal on it's own time. For some reason I don't metabolize pain meds correctly and they just don't work, not even for a head ache or back ache. It's wierd, I know..


The new bladder is great and I am happy about that but weary. I feel there is so much stress right now that I might screw the surgery up. But I keep going. Once Allen gets a job, I think I will feel much better all the way around physically and mentally because our health insurance is running through my old job and it runs out in 2-3 months. I can't wait for the chat rooms to be up and running. I miss you all!

Love,


Kara <img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> cool.gif smile.gif biggrin.gif biggrin.gif

needabrk22
08-08-2002, 09:51 AM
Kara, Im so glad that you are doing so well with the new bladder. I read up some on the neobladders and was wondering if you will ever be able to teach yourself how to urinate and how long this would take you to do?? I know you said you are self cathing right now. Thanks Christy

Kara
08-09-2002, 02:43 AM
I think so, my doctor has not told me much of anything about it. I may be able to but I don't know for sure. Right now I am taking DitropanXL to stop me from leaking. If I stop taking that I will pee myself. It's not time yet to start learning how to train it to urinate and contain on it's own. I don't think I have the strength yet from the surgery. I may need to learn this from someone whom has one. The others just cath themselves every 4-6 hours and it's not really bad. I don't mind doing this for the rest of my life. It's nothing like having IC. I will be sure to keep you posted.

Love,

Kara

MelanieJ
08-09-2002, 05:14 AM
{{{{{Kara************
I'm so happy for you! I totally understand your reluctance to trumpet how well you are doing to the world. I've felt that way in the past too, almost like I'd be risking the wrath of the Universe if I dared be so arrogant. You will continue to be in my thoughts. I'm so happy you continue to keep us posted on your progress.

Let us know how Allen's interview goes!

Warm hugs,
Melanie J.

Judith
08-09-2002, 01:59 PM
Kara, I am so happy that your surgery has put an end to your IC misery. Dontcha just love being bladder free? I know I do! Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

Kara
08-10-2002, 02:21 PM
The only time I know I have a bladder is every 4 hours when my pill timer goes off and tells me I have to empty but I could go much longer which is promising for my future!


Yes I'm glad I'm rid of that dusty old bladder.


Kara <img src="graemlins/hi.gif" border="0" alt="[hi]" /> wink.gif

nccarol
08-10-2002, 02:37 PM
Kara, I am so happy you are doing so well without that nasty old bladder. It must feel really great to not have the constant pain and I am so glad to hear the good news. Wishing you all the best. <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

JOJO
08-11-2002, 05:25 AM
Kara
Glad to hear things are continuing to go well.You are in my thoughts and prayers-JOJO <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

traci adi
09-23-2002, 10:41 AM
Kara so do you still have the inccontenence? wil that ever go away or do you have to take the detrol or ditropan forever?
Traci

lainie
09-23-2002, 11:45 AM
<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Hi Kara, what a relief to hear a good story for a change!! I am so happy for you! I guess we never truly appreciated life pre-IC but now you can have your life back!!
I have urges/frequency/pressure and sometimes a little "leakage".. my uro. said that we may have to think about bulding me a new bladder out of a part of my bowl..is this what you had done? He mentioned something about a bag to, do you have this too? I was nervous because of the self-catheter thing! Could you give us the name of the procedure you had done, that way I can look up some info?

Once again, CONGRATULATIONS!! You have given me some hope!
Lainie

Kara
09-26-2002, 12:09 AM
I have a Neobladder:


"The neobladder allows select patients to void naturally through the urethra.

The neobladder, also known as 'continent orthotopic urinary reconstruction', appeals especially to younger patients who wish to avoid a stoma on the abdomen and/or wearing an ostomy bag. In many cases those with neobladders learn how to completely empty their bladders and do not require intermittent catheterization. However, this is a learned response and not a guarantee. In cases where 100% continence is not realized, regular or intermittent self-catheterization may be necessary."

http://blcwebcafe.org/neobladders.asp

For more information regarding cystectomies and which type of "new bladder" you may want to choose from this site provides great information to those of you considering bladder removal.

On the right hand corner of the following link you will see a list of treatment options that you can click on and learn more about.

Treatment Options on this page include links to:

Urinary diversions
Stomas / ileal conduits
Internal pouches
Neobladders
Neobladders for women
Ostomy resources
Indiana pouch
Florida pouch
Gastro pouch
Hospitalization
Surgical pain


http://blcwebcafe.org/cystectomy.asp

Kara


<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

lainie
09-26-2002, 03:02 PM
Thanks so much Kara,, and good luck to you!!! Lainie smile.gif