cystectomy

[julesb44]

Hi Everyone,
I have been reading all the posts regarding cystectomy because I am at that last resort stage. I have talked with my uro and we have decided to go ahead with the surgery. I did get some info from a few of you in the past, but I need my memory refreshed. Is there anything special I should know about to prepare myself for this surgery? We decided on a continent urinary pouch. Is anyone not happy with that that has one? I currently have a foley in because I was bleeding and unable to pee by myself. I would appreciate any info anyone would like to give me. My e-mail is julesb44@charter.net. My best wishes to all of you fellow sufferers.
Take care, Julie confused.gif

[Judith]

Hi Julie,
I sent you an email. Let me know if you don't get it. I am truly happy with my 10 year old pouch. When is the surgery scheduled? Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Kara]

Julie,

I am sending you an email with lots of information about what I went through with my bladder removal. I will be sending a website that has loads of information about bladder removal with contient pouches like what you are having done.

I'm excited for you!


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

[Kara]

Julie,

The following links are what I read before my surgery. I will email this to you as well. The main site is for patients with bladder cancer, but it does not matter. A cystectomy is a cystectomy no matter what the reason for it is.
I hope this information prepares you for your surgery. It did for me! If you have any questions my email is:

klreese@attbi.com

When is the big date??

Kara

http://blcwebcafe.org/internalpouches.asp

http://blcwebcafe.org/hospitalizationforcystectomy.asp

http://blcwebcafe.org/cystectomy.asp

http://blcwebcafe.org/hospitalsurvivalguide.asp

http://blcwebcafe.org/postoptips.asp

http://blcwebcafe.org/relaxation.asp

[Judith]

Julie, here are two more web sites for you to check out. They are both done by ostomates for ostomates and they both have message boards. It is one thing to read all kinds of technical stuff, but I find it more realistic to be able to connect with others who have gone through what you are about to do.they are:
www.ostomyalternative.org (http://www.ostomyalternative.org) this site is devoted to continent ostomies and
www.ostomates.org (http://www.ostomates.org) this site is for all types of ostomies and the message board is the best one I have ever come across. Judith

[julesb44]

Thank you Kara and Judith! The sites you sent were awesome. I learned more about the surgery. I bookmarked the sites for later too. Thanks for being so helpful. Surgery is in Dec., but I don't know what date yet.
Take care, Julie <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[julesb44]

Kara,
I got some info from you already, but I can never remember everything. Do you have to cath at night? (I want so bad to be able to sleep!) How bad does the nose tube feel? It seems like you would gag all the time. Do you not eat or drink for 4 days or so? How do you take medications you are on? I saw your pictures. Pretty gross, but I know it gets better.How long did you have the catheters? I'm glad everything is going so well for you now. Sorry for the 20 questions! But thanks a ton.
Take care, Julie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Kara]

Julie,

I am going to try to answer all of your questions below. My email is disabled because we moved and need to get new email addresses so I can't email you until then but I am thinking of you everyday!!!

Do you have to cath at night?

(Yes I cath once a night usually at 4AM. I have never slept better in my entire life!!! It's truely a miracle)

How bad does the nose tube feel?

(The nose tube was Hell but I only had it in for my first night there. I didn't gag but I could not swallow because it felt like someone had cut a hold in my throat. I'm not going to lie the surgery itself was a living Hell but I am 3 months out now and I would do it all over again in a second!!)

Do you not eat or drink for 4 days or so?

(I didn't eat for about 5 days I was in ICU for 4 days because I lost a lot of blood and I was critical. But I did start eating and drinking about my 6th day in the hospital. I was in there for 7 days.)

How do you take medications you are on?
( My medications were given to me through IV and after several days, I was able to take them orally again)

How long did you have the catheters?

(I had a foley catheter 8 months before my surgery and I had one after my surgery for about 4 weeks. I had the supra-pubic in for 8 weeks which was H$#@!)


Ask away, that is what I am here for! The surgery itself was not fun but looking back on it I would do it again and again if it meant I would feel as good as I do today! It saved my life because I had no other choices left.

Please feel free to keep chatting with me Julie.

Are you going to have your bladder removed?

Love and Hugs to you!

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

[Judith]

Julie, please bear in mind that everyone has a different experience with the surgery, What may be awful for one person may be a piece of cake for someone else. Also it really depends too on which procedure you have and how your surgeon handles things. Every dr has a little bit different way of doing things. Judith

[julesb44]

Hi all,
I'm having the cystectomy with an Indiana pouch on Dec. 6th. I am nervous, but looking forward to it all at once. I am having surgery on my neck on Tues. That is why I can't do the bladder now. Tues. they will re-fuse my 2/3 and 6/7 levels. They did it in Jan., but the bones didn't fuse. They are taking bone from my hip this time. I hope after all these procedures are finished, I will feel half/way human again! Thanks for your thoughts and help.
Take care, Julie <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[Kara]

Julie,

I will be thinking of you!!!! I will be here all the way for you! If you have any questions you can always ask me. I just went through it in June. I have to get a new email account so I can email you what you need. I will let you know as soon as I get it.

I am so happy for you I am jumping!!!!
I hope you will love not having a bladder as much as I do!


Warm Hugs and Congrats!

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