cystectomy

[julesb44]

Hi all,
I just thought I would update you on my surgery. It was Dec. 6th. There was a lot of adhesions around the bladder, so it took him 8 hrs. Then I was in recovery for 4 more hours. Everything went ok, but I had a leak in my pouch. They had to put another drainage tube in. That made 5 coming out of my belly. Now I am down to 2 and hoping to get them out this week when I see my doc. I am just now starting to get a little strength back and it has been almost 5 weeks. It is a very tough surgery and I've had many. If you have any questions feel free to email me at julesb44@charter.net or you can send a message here. Thanks for all your prayers. I know they helped me come through everything ok.
Take care of yourselves, Julie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Kara]

Julie!!! It's so good to hear from you!!!!!
Wishing you a very speeding recovery so you can enjoy your new bladder!!! If you have any questions feel free to ask away. I've been at this for 8 months now. Can't believe it. I love my new bladder and I hope you begin to love yours too. Sounds like you are doing well!!!
Feel free to email me at klkreese@twcny.rr.com

I will be thinking of you often!!!!

You are my cystectomy sister!

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

[Judith]

Julie, so glad to hear that things are getting better. I'll keep my fingers crossed that you will get rid of tubes next time you see the doctor smile.gif Just remember to be patient, it is rough in the beginning, but later on when things settle down you find this is worth it! Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[TiaTia]

Julie...

I am so happy for you. I have read your posts prior to the surgery, and know that you were very nervous but excited as well. I am so glad everything worked out the way you prayed it would. I will be praying for your continued recovery. Just take it easy and don't push yourself. Major surgery exhausts the body (which I am sure you know), and it takes time (frustrating, I know). I rushed myself once after major surgery, and ended up paying for it with major complications. Take care, and God Bless...

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

[julesb44]

Thanks for the encouragement! I saw my surgeon today and he took one more tube out. Only 1 left! That one he capped off to use in case of emergency. I now start a cathing schedule to train my pouch. I am starting to feel stronger and that is soooo nice! I am eating ANYTHING I WANT NOW! I still leak though and that is frustrating. Also have diarrhea often. That is supposed to go away in time though. Thanks again for your prayers! They worked!
Take care, Julie <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[lildarling]

hi kara
my name is carolynand i have some questions regarinng the new bladder thing. there is this 21 yr girl i am trying to help get on to this website so she can talk to you she is at her wits end and is feeling pretty hopless i told to hang in there, it just so happens thet she is als from you area and the questions are mostlly for her,but myslelf as well.how do you get a new bladder? is it a transplant or is it made from something from your own body and how does it work exactly, confused.gif i dont' understand, can you expaain for me please. thanks for yur time.
carolyn.

[Judith]

Carolyn, there are many variations to making a new bladder, but all of them are made out bowel from your own body. Most doctors use part of the small intestine (ileum) though sometimes part of the large intestion is used. My continent internal pouch is made from my transverse colon. I originally had something called an ileal conduit which was made from my small intestine. With that surgery they took out my bladder and urethra, connected my ureters into the piece of small intestine (which was separated from the rest of the intestine) and then it opened up on my stomach via something called a stoma, which looks like a little pink rosebud, but it is actually part of the intestine. I then wore an external pouch over it to catch the urine. I now have an internal pouch which is kind of like a bladder, only I still have the opening on my stomach (it is very, very tiny) and I put a catheter in it several times a day to drain the urine. I keep the opening covered with gauze and tape. I have no pain from it or the feeling that I need to urinate,it is wonderful. I hope this helps to explain things. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[lildarling]

judith,
thank you very much it does help alot i can now use this info for not just myself but my friend who like i said before is really going through it right now and not even talk seem to help so maybe this info will. thank you very much.

carolyn,

[Kara]

Carolyn,

My emails is: klkreese@twcny.rr.com

I live in Central NY now but I was living in Boston area for 3 years and I'm originally from Upstate NY.


Email me your questions and concerns.


Sinecerely,

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

[lildarling]

kara thanks i'll get right back at you it has been a big help.
carolyn <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[DebbieD]

I had My Urostomy 18 years ago! I still get real bad Kidney infections. I have already been in the Hospital twice in January! Fever 103, chills Kidney pain.But compare to what I had to go through with the IC I will wear this Bag anytime.I still will get a Leak in the Bag, but the only thing to do is to make sure you always carry Spare wafers Bags and all your Supplies with you at all time. I have a Ziplock bag in Shoulder Bag. I also keep one in each car. So if I have an accident I am prepare. I also keep extra Undies also. It will take time to get use to! I went to a support Group and that help me out a whole lot. Then I quit going. But I live each day to the Fulliest and I have a good time while I do it, cause you never know what tommorrow will show or come. Keep the Faith and you will do just fine.

Hugs
DebbieD

E-mail me anytime
ldurham@comcast.net

[songbird7]

Judith,
Can you swim with the arrangement you have now after bladder surgery and the tape over the stomach?
((((( )))))
Songbird

[Judith]

Songbird, I can do anything with the set up I have. Go swimming, use a sauna,bathe, shower, etc. About the only things I can't do involve lifting very heavy objects, which as far as I am concerned is no great loss! I am now taking Coumadin for a condition unrelated to all this and that has far more restrictions and impacts on my life than the ostomy does. bunny Judith