Register Latest Topics
 
 
 


Reply
  Author   Comment  
abi

Registered:
Posts: 31
Reply with quote  #1 

Hi everyone,

 

Just wondering how many people on here have had their bladders removed. I am now starting to look into it more. I would really like to know more about the experiences of people who have had their bladders removed.

 

I would also like to know why more people don't contemplate it as there are a lot of people on here suffering badly.

 

The thought of never feeling my bladder again and being able to walk comfortably and being able to eat and drink what ever I want seems like a dream come true to me.

 

I read an article on Anthony Atala, a urologist in America who has successfully carried out bladder transplants in 8 children. Do you know if you have your baldder removed and have the internal pouch, whether you will still have the option to have a new transplanted bladder if this was to become available in the UK in the future?

 

Any replies I'd be most grateful.

 

Thank you!

abi

xxx

sueworld2003

Registered:
Posts: 1,160
Reply with quote  #2 
I imagine that you must have a very severe case of IC to be contemplating having this done.

The reason why it is often seen as a last resort is that having the bladder removed isn't an 'easy' option as it's often just swopping one set of problems for another.

For a start it's probably used more widely in the states then it is here but most people in the UK don't seem to be offered the choice of having an internal pouch and end up having an external bag fitted. My uro won't do them for some reason, but I suspect that's becuase he's not that familair with the procedure.

Internal pouches can often mean having a very complicated operation and a long recovery time. Also you have to learn to cath every 4 hours or the pouch can rupture. The pouch must be rinsed through regularly to keep musus production down to a minimum and there is the continual risk of infection from the cathing.  In some cases peole have to go on long term antibiotics because of this.

A lady on here has had this opperation done and she can tell you more about it.

The external bag is visually alot to deal with, and although carries less risk of infection it doesn't rule it out completly. There is also the problems with keeping the skin around the stoma clean and free from sores (some people find that where the bag is stuck to the skin can cause rahes and sores and even ulcers over time). Some peole have difficulty keeping the bag stuck to their skin and end up suffering leaking from time to time. Although the advantage with this having an external bag means that you don't have to empty your bag as often as with an internal.

So you see having ones bladder removed is a difficult thing to have done, although if ones quality of life has deteriated so badly that they can hardly function, then yes, I think it is the lesser of two evils and does help people alot. Some wish that they had taken that step much earlier then they did.

If my pain levels increased so much that I couldn't function then I wouldn't hesitate to have it done either. Although studies have shown people who suffer less from bladder pain and more from frequency problems do better with this procedure then pain based patients, who may find that their symptoms are still there after having it done due to 'phantom pain' syndrome.

I know that COB has a conatct numbers of people who have had this procedure done and can put you in conatct with them so you can ask about their own experiences.

As to bladder transplants, well as IC is being seen more and more as an autoimune problem which involves the whole body, just having a transplant wouldn't do any good. All it would mean is the new bladder would eventually become 'contaminated'' and become as inflammed as the one it replaced. This is also a risk you have to consider when having an internal pouch fitted as in some cases IC has been shown to re-grow in the new pouch and cause problems once again. Infact anything that holds the bodies urine for any length of time can be at risk of getting inflamation reapearing in an IC patient.

So no, bladder transpalnts are sadly out of the question I'm afraid.


pink

Registered:
Posts: 45
Reply with quote  #3 

Hi Abi,

I'm new to this forum,but would like to tell you,that I am having my bladder removed in October.

My IC is seriously bad and is getting worse by the day.

It has got to the stage where I cannot go out now.

My surgeon has given me the option of the Neo-bladder,which I have accepted.

I prefer not to have a stoma, incase it bursts.(try explaining that to the grandchildren).

 

all the best

pink

 

vicky

Registered:
Posts: 159
Reply with quote  #4 

Hiya Abi,

 

I had my bladder removed in Sept last year after years of suffering.

It isnot an easy decision to make as for some people they still get the pain afterwards. It is not 100% guaranteed that it will work.

I chose to have a mitrofinoff instead of an external pouch as it really grossed me out when watching the video they gave me to make a decision. YUK!!

 

I will tell you a bit about what happened, but if you would like to know more then please let me know and i will glad to share my story.

 

I was in theatre for 11 & 1/2 hours (should have been around 6) they didnt tell me of any complications so i guess they were just taking there time to get everything correct.

I then spent 4 day's in HDU then was moved to a ward which i spent a further week. so all in all i was not in for very long.

I went home with some tubes still in and went back in2 hosp for another 4 days to have them taken out and to be taught how to catherterise.

At first you have to do it every 4 hours. After a month (or even a couple of weeks) this can be extended to 6-8 hours.

I.e before i got pregnant i did it at 7.00am, 1.00pm then again at 9.00pm. So it's not that bad.

Now i am 3 months pregnant i tend to do it every 4 hours again. I hear that the baby presses on the bladder and because i dont get any more urgency feelings i dont want to risk my new bladder to burst so this is just a precaution that i take.

 

Good luck with this and dont forget to feel free to ask questions. I dont care how personal they are. i had so many questions to ask but no-one to ask.

 

Vicky


__________________
Vicky
abi

Registered:
Posts: 31
Reply with quote  #5 

Thank you Pink and Vicky for your e-mails. Is it possible to have your e-mail address Vicky for when I am ready to e-mail you, that would be really good.

 

Thanks again,

 

abi

x

pink

Registered:
Posts: 45
Reply with quote  #6 

Abi,

you are welcome!!

I know I am new to this site, but I'm here for anyone who needs to talk ok.

All the best to all of you and thankyou everyone who has been there for me too.

pink

vicky

Registered:
Posts: 159
Reply with quote  #7 

Hiya,

 

My e-mail address is vickyg@cmc.uk.net. This is my works e-mail so you will only get an answer out of me during working hours.

Please feel free to ask any questions not matter how stupid.

 

Good luck.

 

Vicky


__________________
Vicky
Chez

Registered:
Posts: 23
Reply with quote  #8 
Quote:
Originally Posted by pink

Abi,

you are welcome!!

I know I am new to this site, but I'm here for anyone who needs to talk ok.

All the best to all of you and thankyou everyone who has been there for me too.

pink

Hi Abi

I too am having my bladder out in October (16th), perhaps we can keep in touch and compare notes!

Things have been pretty bad for a long time, but I have only just plucked up courage to go for the op. Good luck when the time comes.

Chez

pink

Registered:
Posts: 45
Reply with quote  #9 

Hi,

I am booked in for my bladder removal on the 30th october.I will be in hospital on my wedding anniversary never mind, hubby will be in london with me anyway.

He said he won't leave me on my own.

I would like it if we kept in touch.

You can email me if you want to talk about anything personal.

Take care ok.

pink xxx

 

 

pburke

Registered:
Posts: 5
Reply with quote  #10 

Hi there,

 

I have just joined the COB for my father who has been diagnosed with IC after 6 years of tests. He's in really bad pain and wont leave the house, he has a good day followed by a really bad day. He has tried loads of different tablets, reflexology, Homeopathy etc, the next step is to have his bladder removed. I'd really like to talk to anyone to has had this done. I'll email Vicky tomorrow. I'd like to understand what lifesytle changes this will bring, how successful is can be, what his options are - internal bag, external bag.

 

I'd like him to try Elmiron first, as the bladder removal seems to be such a big op. Has anyone tried the above tablet yet?

 

Should dad be taking atrong pain killers for the pains? he taking muscle relaxants now, but they dont seem to do anything.

 

Help, we are getting deparate and hate to see him in such pain.

 

Thanks,  

Chez

Registered:
Posts: 23
Reply with quote  #11 

I was very sorry to read about the distress your dad has been under trying to get a diagnosis. Unfortunately that is the road most of us have been down.

I have to admit that I have not tried Elmiron as my uro was not keen, so I can't comment. I am on a 24hr slow release pain killer called Tramadol, which I only have to take once a day, occasionally topping up if I'm having a bad day. I am also taking pregabalin, which is supposed to help nerve pain along with an antidepressant. Some days are ok, but nothing takes the pain away on a bad day when I will take myself off to bed with a heat pad, which I could not do without.

You will find everyone is different and has their own way of coping, which is one of the reasons this website is so useful.

I hope your dad finds some relief soon, but may well find that surgery is the route he may follow if his bladder is so damaged and is not much use to him. My capacity is so small now that I cannot venture very far from home, unless I know that I can find a toilet. It's good to have a supportive family too as it is very easy to feel isolated.

I hope I have been of some help. I am due to have my bladder removed on the 16th October and will keep the site updated of my progress to help anyone contemplating the same. There is also another lady called Pink who is due to have her bladder out on the 30th October.

Chez

Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.


This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.