Update on Bladder Removal

[Kara]

I have been on and off in here lately. I wanted to give an update on my Cystectomy with Continent Ileal Conduit surgery.(Neobladder) [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.]

People ask me how I am doing. I will tell them between 85-90% better. I catheterize myself every 4-6 hours during the day. Sometimes I have trouble with Kidney Sones and UTI's which are both new to me. I am still trying to find a compassionate Uro in NY whom will take care of me. Most docs are scared to death to handle my case because it's such an unusual one. My new bladder was the best gift that was ever given to me and I am truely blessed to have it. It's already given so much of my life back to me it's not even funny.....If given the choice to do it all over again, I would do it in a heartbeat! I just need to get a handle on the infections and the stones. Once that has been done, I will be 100% better! If it does not happen, I will take the 85% better and run as fast as I can with it as I have already done! <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" />


I hope some of you can find some hope in my situation.

I am working on my story to go up to the patient story board, just being lazy about it....


Best Wishes to you all!!!

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


Kara

[Lauren1100]

Dear Kara -
((((KARA))))
Wonderful to hear!!....sending HUGS, Lauren
smile.gif smile.gif smile.gif smile.gif smile.gif smile.gif smile.gif

[vm]

Yay, Kara! I saw a post from me to you on another board one day when I was busy and now I can't remember where it was. But, hi and thank you for thinking of me. I am soooo happy to hear how well you are doing and that you are with no regrets!!!! smile.gif

[rnewman]

&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;&lt;CONGRATS KARA!!!&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;&gt;

Im so happy that this has worked for you. 85% is a huge improvement- Id run with that as well!! LOL <img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> I hope you continue to feel better and that you knock out those nasty infections.

Im very interested in your procedure- Im not considering this yet for myself, but Im a nurse and its so new it certainly wasnt in my textbooks! Anywhere I could read about it?
And what made your final decision to do this so young??
Also- this may be a stupid question...if someone has pelvic symptoms, and they have a bladder removal..do those go away too? Like pelvic floor muscle spasms and stuff?

Just wondering, thanks, and lots of luck!!!
<img src="graemlins/kissing.gif" border="0" alt="[kissing]" /> Rachel

[Kara]

Rachel,

To answer some of your questions:

And what made your final decision to do this so young??

Well my bladder was the size of a walnut and couldn't hold more than 30cc's in the very end. I had refractory, end stage, interstitial cystitis. It was a ball of cement full of scar tissue aqnd adhesions. My doc said there was no way to possibly save any part of it as it was practically dead. I also has scar tissue that developed outside of my bladder that was inflaming my other organs down there. No one is sure why that happened but it was jepordizing these organs and it was dangerous. Also my quality of life was 0 out of 100. I did not want to live anymore so we had to make some sort of decision and having the old rotten bladder taken out was my decision. I had a lot of people telling me I was insane including some of my family members. It was not easy and some people were down right nasty to me about it. But I held my head high and decided to listen to my heart and body and I knew it was time. I'm glad I made the right choice like I said, I would do it all over again in heartbeat.

Also- this may be a stupid question...if someone has pelvic symptoms, and they have a bladder removal..do those go away too? Like pelvic floor muscle spasms and stuff?

My pelvic floor muscle spasms went away with my bladder removal because the pain and spasms were coming from my bladder. As far as other pelvic floor problems I still have my interstim in and that helps with those issues. THe Interstim is used for a wide variety of things including pelvic floor and bowel problems.

To read more about cystectomies you can go to:

If you click on this page you can obtain information about all types of bladder removal (cystectomy) procedures such as:

http://blcwebcafe.org/cystectomy.asp

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

If you have any other questions please feel free to add me to your AOL or Yahoo Instant Messengers. My AOL instant messenger name is karacoon76 and my Yahoo Instant Messenger name is kara_reese


Best Wishes to you all!
<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> <img src="graemlins/kissing.gif" border="0" alt="[kissing]" /> <img src="graemlins/angel.gif" border="0" alt="[angel]" />


Kara

[julesb44]

Hi Kara,
I am so happy to hear you are still doing so well! 85% is wonderful! My cystectomy is Fri., so I am feeling a little nervous, but also excited. Thurs. I have to drink this Golytly stuff. Did you? There's like a gallon of the stuff! I'm not sure how I'll get it all down! Anyway, I'm anxious to join you and be ic free!!
Take care, Julie smile.gif <img src="graemlins/baby.gif" border="0" alt="[baby]" />

[CELESTRA]

Julie, I've been reading your posts, and just want you to know that you'll be in my prayers on Friday, as you have your surgery...I'm wishing you all the best, and wonderful, healthy times ahead...Celeste

[Alisha]

Julie,
Are you getting the neobladder like Kara, or you having a complete cystectomy? I understand you anxiousness....surgery is a very scary thing. I usually get panic attacks before surgery, so they always have to give me something to calm me down before they put me under. I will pray for you that everything goes well on Friday. Please keep us posted after your up and able to post again. Hope you finally get some relief after this is all over with.

Thinking of you,
Alisha <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[Melanie R]

Kara,
I'm so glad to hear that you're doing so well!!! 85% better is amazing smile.gif I hope you become 100% better in the future...If anyone deserves it, it's you! Good luck <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[mayray518]

Kara, so glad that you are doing well. I begged a doctor to take my bladder out in 1996 after I had been bedridden for 4 years. He said "Oh, come now, you don't have to go to that extreme." Interesting, how family members think you're crazy to do it. Let them feel what the pain is like. Most people couldn't live for a month with IC pain let alone years like most of have. Glad you found a doctor who would listen to you.