Bladder removal

[Janelle]

I will be getting my bladder and urethra out soon and they will put a new bag inside. I have an appt. with the surgeon on Monday.

Has anyone out there had this procedure? My uro said that I will have to have a hysterectomy as well to make room for the bag.

I cant believe it has come to this, but it is my last hope for pain relief. Right now I am taking 40 milligrams of oxycontin and I am still in so much pain!!

Anyway I am so scared and depressed right now, I have two little boys that I love soo much. I want to have have one more but I guess that's out of the question!! I am scared to have the surgery. I just wish this nightmare would end soon.
---Take care---Janelle [img]confused.gif[/img]

[jodiii]

Hi Janelle,
I am very sorry to hear you are having so much pain. i did notice you are from utah. What part? I am also from utah. Im in salt lake city. I am also preparing for surgery. I have an apt with the uro on the bag also next weds the 24. but, i have not heard of a hystorectomy to have room for the bag. have they told you about when they would like to remove your bladder? I think it is scary feeling to have surgery any surgery but, your health is so important!!!! especially with having two boys. I have three boys. I hope you get some great support on the different surgerys. My uro wants me to to go the University of Utah to sit in on a support group and listen and ask questions about the different surgerys and decide what would be best for me. I think maybe you should give them a call and if you need a friend there just let me know i will be attending some of the meetings for myself. just remember your not alone. were here for you!!!!
Hugs
Jodiii
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[Janelle]

Hi Jodii,

I am from Orem. I have an appt with a surgeon in Sandy. I have to go where my insurance will cover, ya know?? I would like you to e-mail me if you [email protected] sounds like we are going through the same things.

I am supose to go to a pain clinic at the U of U. But they have not called me back to make an appt. How old are your boys? Mine are 5 and 7. Anyway e- mail me if you can!!1 Take care------Lu, Janelle-------

[Kara]

Janelle,

My name is Kara and I am having my bladder removed June 14th. I will be keeping my uterus, as I have not had children yet. I am 25 years old and IC has stolen my life and spirit. I live in the Boston area of MA. If you want to talk you can email me at: [email protected]

I will be going through this with you!
When is your surgery date?

Remember my prayers are with you to give you strength as you move forward into this surgery!

[Judith]

Hi Janelle, my name is Judith I had the surgery you are going to have. I originally got an ileal conduit where I wore an external pouch and had that for 6 years. Then 10 years ago had it converted to the internal pouch. I LOVE it!!!!!!! I kept my uterus through all those surgeries, but just had a total hysterectomy this past September due to prolapse. I would be happy to answer any questions you may have. You can email me at [email protected]

[lisa35]

When did you decide to have your bladder removal?

Janelle or Jodi,

I am originally from Utah, I moved to Nevada almost 3 years ago from American Fork. Your surgeon wouldn't happen to be Corbin Clark, would it? I have decided to wait until September and then I am going to have my uro here in Nevada evaluate my situation and then I will be coming to Salt Lake City for a second opinon. After 12 years of living with this garbage if there is no improvement after 1 year on Elmiron I am going to consider removal. I have not noticed any improvement from the Elmiron yet. I also take 40 mgs of oxycontin 2X a day with percocet for breakthrough. The oxycontin has completely shut my digestive system down. I am constantly severely constipated and I am sure I am suffering from the toxic build up in my system. I am 35 years old and I had a partial hysterectomy when I was 31 due to endometriosis. I have tried every treatment that is available. I am no longer treated as and IC patient but as a pain patient.

When do you give it up?

Lisa

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[jodiii]

Hi lisa
Sorry to hear of all the pain you are going through. i was on elmiron for 2 weeks and with all the medications i ended up in the ER with what the doctors told me was a stimulated heart attach. well lets just say that scared me to death. I am very carefull of the medications i take i dont want to end up there agian. I also have the toxin problem. when i have to go i get very sick and nautious. then my pain starts. the uro tells me its from the small compacity and that i am backing up. so they dont want to send me to the bladder management classe. where you go through trying to relax and hold it. So thats out. then they wanted me to do the surgery where they cut your muscles around the bladder to help with the contracting. but, agian i have had three c sections so most of the bladder muscles have already been cut. so when you say when do you let it go. i agree.

i have some friends that live down in americna fork also. i think its a nice place. what part of nevada do you live in? you can email me and let me know [email protected] My husbands family has a place in mequite i love to go there and play bingo. but, the drive has been to much and we have went down for about 8 months. we stop every half hour on the way down. its gets to be to hard. ya know. when are you comming up to salt lake ciy? the doctor me and janelle were refering to was richard labaski.
Have you herd of him? I am going in tomarrow to find out what type of surgery and how much more my bladder has shrunk. i was down to 38cc last time i went in (3 weeks ago). I am nervous as hell but, i know its for the best. look us up when you come into town. Its nice to know where not alone that we have each other to understand all the pain and missery. let us know how your doing and if and when you plan to have surgery.
take care
Jodiii [img]tongue.gif[/img]