Bladder Surgery

[Annic]

Hi there: I am a new member to the boards and am in trouble. I would like to gain information about bladder removal-if there are people on this board who have had the surgery. I have been diagnosed for several years and have tried everything-installations, nerve blocks, physical therapy, and medications-nothing is helping. I have a terrible time with my daily medications-they irritate my bladder terribly. After my last hydro-I have a shruken bladder with very little capacity. Not sure of the numbers. Anyway-they are now discussing surgery with me. Any input-which way to go-augmentation-bag-or continent diversion? I would greatly appreciate speaking with someone who has experience with this situation. I am also on pyridium and they have told me I will have to come off this soon-it is not a long-term drug to be using? Anyone who has been on this drug for a long time? Would like some imput-just not sure what way I am going-I am miserable with this condition-housbound and want to have a life again-
Thanks, Ann

[marsi4]

Hi Ann!

I have not had bladder surgery but it's crossed my mind. I am housebound for 8 months now but have not tried many treatments. I'm currently on Elmiron, if that doesn't help I will try instills, and if they don't help I will be considering surgery as well. I am 39 years old and have had this dreadful disease for 30 years. It only got really bad since last year. I have tried many oral medications anf find they help somewhat but not enough to function and care for myself. You're youger than I and I'm sorryn that you are in this very difficult place in your life. I can relate. There are several people on this board that have had bladder removal and I hope they will reply. I have done some research on bladder surgery and the safest procedure seems to be the exterior bag with a stoma. There's less complications with this procedure, less infections and less removal of your intestine. There seem to be more problems with the Indiana pouch, and the neo bladder. I would recommend that you do some research on the internet and find yourself a reputable surgeon to do the operation. I know how desperate you are in feeling better and being able to have a life again. Hang in there. I hope you have a successful surgery and rid yourself of this horrible illness. I also urge you to discuss this with several top uro's before you make your decision.

I'll be praying for you and you'll be in my thoughts. If you do have the surgery please come back on the board and let us know how you are doing.

Hugs,

Marsi4

[ICNDonna]

We do have some who post here regularly and have had surgery. Hopefully one will respond to your questions.

Donna

[DebbieD]

Look on the Thread of Bladder Removel. There are several People here that have had from the Kock Pouch to Ileo-conduit. If you have any questions I am sure we will try to answer them. But remember each Persons Body is Different and each responds in Different ways.Just Make sure before you have surgery that you seek and look at all options Okay.

I have a ileo-conduit for 20 years. I still have some trouble. I have had 4 blockages and Kidney removed also Cause of the IC.

Just ask and each Person will try to help you. But just to be sure ask your DR. all the Questions okay.

Take care.
The Board is a Great Place to come to. Everyone here Cares for each other. It is one Big Family :grouphug:

DebbieD

Just ask away okay.
There are other sites that can help you on surgery also.

[Annic]

Thank you for your kind replies. Hopefully I can navigate around and gain more information before I make this drastic change. My life revolving around the bladder is stressing me out. I am sure others can relate. I will be happy once I figure out which way to go? Thanks,-Ann

[Imustpee]

I will be having removal surgery next month... :woohoo:

[Annic]

If you do not mind me asking-How will they be doing your surgery? Will you wear a bag? Are you nervous or just ready to have it over with? I am tired of all this baggage of bladder problems-just to have some down time would be nice. I do hope your surgery goes well and you have success with it-Ann

[Imustpee]

Hi Annic...They will do a complete cystectomy and creation of a continent pouch..I will cath every 6 hours depending on how much I drink/eat...right now I have a Foley in so I am not peeing 40 times a day...I have had bladder problems all my life...I know nothing different..I wasn't "Normal" first and then got IC...I have had it since 1966...I have finally just had enough..

[Annic]

Yes-surgery is a last resort-you sound like you have tried many things. Like you-I am really waiting until I reach that feeling of enough is enough-I am close-you sound excited-this is a good thing-please let me know how things go okay? Ann

[Imustpee]

I am excited...I wish the surgery could be done today!

[marye]

It seems that augmentation seems to be the least popular choice. In the best of cases it usually fails one third of the time requiring more surgery. With IC, the failure rate may well be much higher. Having lived like this for 30 odd years I have real empathy for you and hope you are able to find some resolution while you are still young enough to enjoy your life. Good luck and welcome to the boards. Mary

[Annic]

Thank you Mary. I am just starting to learn about the different surgeries-I would like to have a good understanding about all of this-this site is so great-I have looked on the bladder removal board and there was some good information on this site-it is so helpful! I will keep you posted. I think I may be leaning toward the bag-just not sure yet-Ann

[curlycue]

Imustpee,
I dont understand why are you getting the continent pouch? will it hurt to cath?

[Imustpee]

Because I won't have to wear an outside bag. I will cath through a stoma...my whole bladder and urethra will be gone..

[Annic]

Boy does that sound nice! Cathing every 4-6 hours sounds so wonderful-you will actually be able to leave your home and live life again-Ann

[curlycue]

but does that hurt?

[Judith56]

I have had all the surgeries. I started off with an augmentation, whihc failed. Then had the cystectomy with an external pouch for 6 years. Becuase I had some problems with it, I needed to have a revision done, so when I was offered the chance to have an internal pouch I wnet with that. That was 13 years ago. I LOVE it. I cath several times a day. It does not hurt to cath. It is as close to being "normal" without having a bladder. I am having trouble with my computer but will try to check in again soon. Judith

[carly]

Ok, I can't fugure out how to start a new thread. This is Carlin. I had my surgery Nov. 1. I need help! Both of my lungs collapsed, then they gave me too much lasix and my blood pressure bottomed out. I am having so much pressure/pain in my pelvic area and a vaginal discharge. I don't have a temperature. It is so hard to have a bowel movement, I don't want to eat any more. Someone who has had the surgery, please email me and tell me things will get better!!!

[marye]

Oh Carlin,

Been following the posts of all you brave ladies having surgery. I wish so much that I had an answer for you. I do know, though, that things will get better soon. You've been through so much they just have to!!

We'll all be praying that the recovery gets easier every day. Although I'm sure it doesn't seem so to you, it's early yet and will improve. And if it doesn't bug that doctor until he helps you. Mary

[curlycue]

I will keep you in my thoughts and prayers. I am sooo sorry you are going through this I dont have a answer for you, I hope someone was able to help you. Good Luck and be safe.

[Judith56]

Carly I tried to answer your message, but your mailbox is full. You will have to delete some of your stored messages so you can get mine. Judith

[carly]

Judith, I deleted them, so please send a reply. Thanks!

[Imustpee]

Carly...welcome back...how are you today? I know you were worried with your lungs..sounds like it didn't go well...do you still have your urethra?

[Babs RN]

Hey Lesa,
How are you doing? Only a month for ya! Yipee. I can't wait for you to feel better. I go see our man next week for 2 days worth of some scary tests.

Hugs,
Barb :) :grouphug:

[Imustpee]

Dec 23rd can't come fast enough for me! :woohoo:

[Imustpee]

Barb, what tests his Dr R going to do? I told him that I got his name from you..I told him Barb, but I didn't know your last name..

[mayray518]

Oh I feel so bad for all of you. I got my relief with elavil or I would have been considering surgery because I was so desperate. I know what it is like to be housebound and have no life. I pray for all of you, you are so brave. Imustpee please let us know what the surgery goes.

[bellaluna05]

Annic,
What did you decide to do? I am in the same situation, I am completely homebound too. The pain is unbearable, I can't live lise way. The IC isn't my only problem ether I have severe constipation, I can't find anything that helps it, it all hurts my bladder, I have fibromyalgia, and CFS. I am in hell. All the doctors I see tell me I only have one option, surgery. Removal of my bladder and urethra. I don't know what to do. I guess I know that I have the surgery, but I really don't want to because I am so sarced. What are you going to do to?
Lara

[Silverfox]

Hi, Lara,

I have sent you a private mail. Perhaps I have some info that may help you.
I was the same as you at one time. I did forget to mention one important thing in my pm to you. Hope I can help. I understand this is a hell but you have the same related symptoms and I have a suggestion for you to research.

Best wishes Sheila