BLADDER AUGMENTATION AND ROOM FOR PEE

Its tine to discuss another of this surgery.  Which really is a surgery in and of itself.

BLADDER AUGMENTATION

  This is common with the MACE AND MONI surgery.   But is not necessarily a "HAVE TO" with these surgeries.


Our doctor presented us with the pros and cons. The biggest pro to us was that basically for the MONTI work the way it was intended his bladder need to hold more. If not he would have to cath very very often.  I knew my 8 year old would not like to spend his childhood in the bathroom.  Also a lot that choose not to do this to begin with end of adding it later on.  We try our very best to not put him through any more surgeries then necessary.  So we signed up for this doozy.
The picture above is for those visual learners.

A website that had a decent simple explanation

Q: What is involved with a bladder augmentation?

A: A bladder augmentation is an operation that expands the size of the bladder by adding a piece of the intestine to the bladder.

Because the intestine is stretchy and not connected to the same nerves as the bladder this increases the size of the bladder and decreases how often the intermittent catheterization needs to be done.

This operation may be combined with the creation of a continent stoma to make intermittent catheterization easier to perform.

Before you sign up there are also some long term risk factors that you need to wrap your brain around, and thats CANCER.    I know i dont even like to type the word. But im here to lay it all out on the table

This information and more of it was found here.

Bladder cancer

If intestine tissue is used, there is about a 1% risk (one person in every 100) that bladder cancer can develop. At the moment, bladder cancers have only been seen 10 years or more after the operation. It is thought the intestine tissue can react with the urine, causing the bowel cells to change and become cancerous. Your child will need life-long follow up with an annual cystoscopy (looking at the bladder with a small camera) and biopsy (taking some cells and testing) to check for cancer cells. Keeping the bladder healthy is important - don't smoke, empty the bladder often and treat UTIs quickly - these are all ways to keep the bladder more healthy.

Despite these risks, many children have gone ahead and had their bladders augmented. Surgeons have been doing this operation since the early 1980's around the world. If affected children did not have this operation, some may develop severe kidney damage (maybe needing a kidney transplant) or have ongoing urinary incontinence.

The other thing you need to realize with a bladder augmentation is that you will be fighting MUCUS. Now I dont know where you stand on mucus but it is disgusting. Id rather poop then mucus. snotty noses are blaaaaaaaaaa.  However, this is quite the same thing. Once a day for FOREVER you will be suctioning mucus out of your child's bladder. Okay that sounds very dramatic. Its really no big deal.  We fill a syringe with sterile water, push it through the catheder and then pull it right back out. When you pull it out it is now filled with the mucus. Its kind of like washing the bladder out. My 8 year old knows how to do this and is a PRO.

The biggest, "I HATE THIS PART" issue is that when you go to pull back on the cath it can get sunctioned to the wall of the bladder. In the beginning this was the SCARIEST PART EVER!!!! 

So remember I talked about the bags, well now picture stiched in cath with a bag. You take the bag off you go to fill the bladder with sterile water and then you go to pull back and nothing happens. Everything you just pushed in is staying in there and you arent getting anything back!!  CUE COMPLETE FREAK THE FREAK OUT!

Its okay at this point, you try to reposition the cath as best you can (with it being stitched still, trust me it can be done) and try again. 

At some point you will panic and pull back a little too hard thinking that force is the answer...Then you watch the cath fill with BLOOD!! CUE COMPLETE FREAK THE FREAK OUT AGAIN.  Its okay.  You just roughed up the bladder wall again reposition the cath and try again.  

the only problem is YOU HAVE TO GET THE MUCUS OUT. so you have to keep going until it works.  It always does eventually, but not until you are dripping with sweat and hyperventilating. 

Right after surgery my son HATED the pressure of us filling his bladder this way and he cried. I thought holy crap this is forever. Well now he does it himself and could care less.  its just not a big deal.  Truly almost everything with this surgery is in the beginning very different from the end.   

I hope this helps and does cause you too much freak out reading about it.  FEEL FREE TO ASK QUESTIONS!!!