Bladder Exstrophy and Epispadias

Sofiztikated

Hi All.

After watching an inspiring show on BBC last night about a guy with Treacher Collins disease, I decided I should do something to help people.

I have Bladder Exstrophy and Epispadias.

The Exstrophy is a congenital condition whereby you are born with your bladder (or part of) on the outside of your body.

The Epispadias is is a cleft in the penis, with the urinary tract connected to the wrong part. The opening is on the top of the penis. The 2 conditions usually appear together, but epispadias can happen on its own.

There is surgical correction, and is now done at a young age. I had mine done at age 16, after a number of failed (and one majorly botched) operations.

My Mitrofanoff procedure was one of the first successful ones in Ireland. This procedure is where they use your appendix to connect you bladder to your abdomen, and to empty it, I catheterise whenever I need to.

This condition occurs once in 30,000 births, and a predominace for males.

If anyone has any questions, either about their own condition, a partner, or childs, don't hesitate to ask. I will say I'm not a medical professional, I can only relay my own thoughts and experiences, and I will be as honest as I can.

You can post here, or PM me. Even if this is dug up in a long time, just PM me. I will answer.

catherine flaherty

Hiya,

There's so good to know there's someone out there here in the Irish Community cos only know one person so far personally that has it.

Im 22 years old and i was born with Bladder exstrophy but for me it wasn't the bladder outside my skin i had ureters postioned abnormally and had number of surgeries up to the age of 17 and now have kidneys problems do you have the same because of the recurrent UTI'S?

Cos just been discharged from hospital yesterday and now been diagnosed with chronic kidney disease.

catherine flaherty

Hi All,

Just recently joined this and would like to know is there many in Ireland with this very rare disorder.

Im 22 years old and have been in and out of hospital since i was 4 weeks old and was diagnosed with the disorder, i have mitrofanoff of 5 years and doing well with it but now have been diagnosed with CKD (Chronic Kidney Disease) and would like to know many in Ireland with bladder exstrophy develop Kidney disease?

Thanks guys.

Sofiztikated

Hi Catherine.

Just saw the reply today.

I'm prone to kidney infections, generally get one a year, or more if I'm run down. A course of antibiotics usually does the trick, but it does knock me for six every time.

But apart from that, I've got fairly healthy kidneys.

When you catetherise, do you use a new one every time, or do you reuse?

MWrigley

Hi All My name is Matthew and i live in Australia and i was Bladder Exstrophy and Epispadias as well

I am 25 years Old and i was born back in 1986

I live in Brisbane Queensland Australia i live at home with my Mum and Dad

I catheterize to every 4 hours i don't have a mitrofanoff

I hope that one of you can tell more and try and stay in touch i am sorry if i am not in Ireland but it is good to meet people around the World.


Some time this Year i am going to have a anther operation for my Bladder Exstrophy

Sofiztikated i see that you have been through a lot so have you catherine just like me if you wold like to tell me more a bout your self i can do the same

From
Matthew

MWrigley

I what to try And Help People how has Bladder Exstrophy or how know some one with Bladder Exstrophy so i can help them i know i was born with Bladder Exstrophy back in 1986 in Australia i am 25 years old and the last years i have been on Facebook helping people with Bladder Exstrophy or people looking after Bladder Exstrophy kids


it is fun to get to know people around the world how has Bladder Exstrophy it is a long and hard road we are on with Bladder Exstrophy and it is what o am here to help people as much as i can



From Matthew

catherine flaherty

Sofiztikated wrote: »

Hi Catherine.

Just saw the reply today.

I'm prone to kidney infections, generally get one a year, or more if I'm run down. A course of antibiotics usually does the trick, but it does knock me for six every time.

But apart from that, I've got fairly healthy kidneys.

When you catetherise, do you use a new one every time, or do you reuse?

Hi Sofiztikated,
My deepest apologies for only getting back to you now, I rarely use Boards but now starting to get the hang of it !

I do reuse the catheter when i self catherise, I usually get a box of 10 tubes each month and that box usually lasts a month.

But I try and keep it as clean as possible, for hygiene wise.

I suffer badly from kidney infections around every month, but lately even though on rotation course of antibiotics for prevention, my last bad one I had been ill with was two months ago.

I would recognise the symptoms quite quickly and attend to the doctor quickly before get any sicker which would end up being admitted to hospital for IV antibiotics .

I also got my mitronoff operation done when I was 17 and since then it has been a huge success.

Have you had any difficulties since the operation?

I usually find when you have an infection, you have a lot of mucus and at times might have difficulty catherising?

Thanks and apologies again,
Catherine

catherine flaherty

MWrigley wrote: »

Hi All My name is Matthew and i live in Australia and i was Bladder Exstrophy and Epispadias as well

I am 25 years Old and i was born back in 1986

I live in Brisbane Queensland Australia i live at home with my Mum and Dad

I catheterize to every 4 hours i don't have a mitrofanoff

I hope that one of you can tell more and try and stay in touch i am sorry if i am not in Ireland but it is good to meet people around the World.


Some time this Year i am going to have a anther operation for my Bladder Exstrophy



Sofiztikated i see that you have been through a lot so have you catherine just like me if you wold like to tell me more a bout your self i can do the same

From
Matthew

Hi Matthew,

My apologies for only replying back to you now, it's only now getting used to getting the hang of this forum !

I am 23 years old and for the first time in 23 years, haven;t been admitted to the hospital for any procedure in the last year and a half, it has been a great relief to say the least.

Over the years, I had a number of surgeries up to the age of 21, I had a lot of failed surgeries surrounding the reconstruction of the bladder, such as re-implanting both ureters and tightning the neck of the bladder.

But in summer 2006, had got a mitronoff and the surgery lasted for over 7 hours, had a few complications after surgery but after being in for 3 months, finally got home and no complaints with the mitronoff since.

Not only though did I have bladder exstrophy, also have chronic kidney disease ( CKD), hypertension due to CKD and Co-arctation of the aorta, which is narrowing of the aorta.

The only problems I have since is my right kidney has very little function and because of this my creatinine has dramatically increased and this has lead to the my good kidney dilating.

At the moment all they can do is keep an eye on things, although, there is a possible of kidney dialysis down the road.

I know how it feels though to be young and wonder is there anyone else that understand what it means to have bladder exstrophy.

Is there any support organisation in Australia?

Unfortunately, there isn't any support group in Ireland but I'm hoping if we could find more members on this, we could form a group together.

How did your surgery go? Hope your health is overall going well for you.

Looking forward to hearing from you,
Catherine

LegacyUser

Hi everyone
I'm so delighted to have read your posts. My daughter was born in 2010 with bladder exestrophy. It's so rare to find anyone in Ireland with the condition. Can i ask u all what hospital looks after you all? My daughter has to go to great Ormond Street in London. Only found out last October that the Kelly procedure didn't work and a few weeks ago was told her insides are in poor condition.
Any help would be greatly appreciated