supratrigonal cystectomy - Interstitial Cystitis Network Support Forum

sadgirl · 10-30-2005, 06:48 AM

Hi all,

Excuse for my english, I'm from Spain. I'm 23 years old, and I have ic for 6 years. All the treatments failed in me (botox, DMSO, elmiron, neuroestimulation of s3...) and I decided removal my bladder. I have a supratrigonal cystectomy + neobladder, but I still having the ic symptoms. I have frequency and urgency. I have the symptoms only in the trigone. I'm desesperate. Anyone happens the same of me? Anyone knows if is it possible removal the trigone but not removal the neobladder?

hugs,

moni

Babs RN · 10-30-2005, 06:58 AM

Moni,
Welcome to the boards

Spain is beautiful country. As far as your surgery, I have little knowledge about the outcomes but can say there are a bunch of people who have had this done on the boards. Good luck.

Hugs,
Barb

**Judith56** · 10-30-2005, 03:44 PM

Hi Moni,
I think what has happened is that the IC may have spread to the new neobladder. In this country when they do the procedure it is called an augmentation cystoplasty. I know becuase I had it done and the same thing happened to me. They looked inside the new bladder and saw that the IC had spread. I ended up needing to get it all removed and have a urostomy done. As soon as they took out all the bladder and the urethra all my syptoms were gone. It was wonderful. That was 19 years ago and I do not regret having the surgery. Welcome to the board! Judith

tigger_gal · 10-31-2005, 02:53 AM

many years ago my mom wanted her bladder removed and they had told her that the ic could come back and attack the new one..... and it also could go up into her kidneys...
Judith is right if your going to have it taken out do it all and go the route she did.
good luck and feel better soon.

DebbieD · 10-31-2005, 05:01 AM

Hello I have had alot of Surgeries for the IC and When they took my Bladder out the IC attacked my Ileo-Loop 3times and then it attacked my Right Kidney. So I have 3 revisions and Right Kidney Out. But Each persons Body is Different.If the IC is Bad enough it can cause different things to happen to your Body

Good Luck.
DebbieD

Cheries · 10-31-2005, 04:32 PM

Sad girl- Lo siento mucho el dolor que tienes! Yo soy de los Estados, pero hablo espanol. Me imagino que hablas espanol, como eres de Espana, pero tu ingles es tan bueno. (Mi espanol es mas o menos!) I have not had my bladder removed but feel free to email me anytime. My email is cca1213@sbcglobal.net. I am there for support. Espero que te sientes mejor, es posible que te falta sacar todo tu bladder. No se.

sadgirl · 11-11-2005, 07:09 AM

Hi,

Thanks for your answers, my doctor says to me that he makes me a denervation of the trigone. I hope the denervation works in me. Anyone has made a denervation? (sorry for my english )

**Judith56** · 11-26-2005, 03:12 PM

I had a denervation done and it really did not make much of a difference for me, but everyone is different. It was done after I had my augmentation done in hopes that it would relieve the frequency and the constant urge to need to urinate. Judith

sadgirl · 11-28-2005, 12:14 PM

Hi Judith,

Thanks for your answer. I think that denervation will not work in me

. Nothing works in me. I still having urgency and frequency after the bladder augmentation. Are you happy with the urostomy? How old was you when had done the urostomy? I want to know the complications when do the urostomy during the time. I want make me the urostomy, but I'm 23 years old, I think that my doctors won't like to make me the urostomy because I'm younger. (sorry for my english, I understand English but it's very difficult to me write in english)

Hola Cheries,

Mi email es monih82@gmail.com escríbeme cuando quieras, puedes escribirme en inglés que lo entiendo bastante bien, sino te importa te escribiré en español porque en inglés me es muy difícil, por eso no participo apenas en el foro. Muchos abrazos