Help/question

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Smith -- I feel such empathy with you. This I know: when a child in a family has a problem, health wise or behavior wise, everybody in the family is affected. It's like having a drug addict or alcoholic in the family.

You and your wife are at the greatest risk. Your marriage will be tested. Your care for the emotional and mental health extended from both of you to each other will mean how you survive or destruct. You have to increase your honest communication and be together on your decisions about your son. He will probably be gone from your household by the time he is 19 or 20 and will have his life to lead. Please don't let this challenge separate you and your wife. She needs your understanding of what she's going to be going through for the next umpteen years, every day. And you need her understanding of how perplexed you are about making any choice involving your son. You as a family have to decide what to do and not look back.

You didn't say if you have other children or how old your son is , but I gather that he is in school yet not able to make his own decisions, yet you need to inform him of all the alternatives and help him to work with you and the doctor if necessary. You don't want him to blame you later and cut off relationship with you for making (in his mind)the "wrong" decision.

Also you didn't say if this procedure can still be done at a later time in his life? Is he active? Does he have friends? Will his "leaking" cause him to be bullied at some point in his life? Make a list of questions and have him think about them.

As for brushing teeth. I had four kids and only one of them ever took care of her teeth. The others (with false teeth) are sorry that they didn't. It's called consequences of behavior and you can't control everything.

I'm with you here, even if my "advice" sounds stern. I've lived it.

 

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I'm sorry Smith. I went back and read your chat and see that your son is 5 years old. But he still can be involved in the conversation to some extent. It will be his life.

 

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Thanks for the input everyone. Can anyone recommend a website to get high quality youth diapers or pull-ups. If we could find pull-ups that fit properly that would might allow self care, but the problem we are having he inherited Precocious puberty so he manhood is very large for his age witch makes fitting into normal store bought pull-ups almost impossible

 

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Thanks for the input everyone. Can anyone recommend a website to get high quality youth diapers or pull-ups. If we could find pull-ups that fit properly that would might allow self care, but the problem we are having he inherited Precocious puberty so he manhood is very large for his age witch makes fitting into normal store bought pull-ups almost impossible

Hello Smith, there are a couple of good websites. LL MEDICO, XP MEDICAL and NorthShore care are all good reliable vendors, hope this helps.

 

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The rate of infection and premature death with urostomy is very high, but it isn’t with diapers. That would (does!) seal the deal for me: no urostomy bag. Within a couple of years your son will be much better able to care for himself.

 

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Since this doesn't seem like a decision that involves danger to his health or life, and since installing a urostomy bag is pretty much non-reversible, I would absolutely wait to let him decide. Living life with incontinence is not the worst thing that can happen to a person, and he may just decide to choose diapers over the bag. I think I would!

 

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That makes two of us, @btmsupnmd! I'd choose the diapers, unless a urostomy is done as a life-saving option, such as cancer or being in an accident of some kind.

 

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An irreversible and potentially infectable operation versus learning to live with a birth defect simplifies the situation.

 

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Start with north shore. You can request free samples from them. There are a number of others on yet internet you can look into as well.

 

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“Free,” but be prepared to pay a lot for shipping.

 

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Hi snow, there's always a "gotcha!" and the shipping costs on your "free" samples definitely qualify as that!

 

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I don't know enough about the OP's situation to be able to offer much advice. I've never heard of a missing bladder with disconnected ureters before, so it seems to be pretty rare. I've also never heard of a ureter-to-urethra anastamosis; when the bladder needs to be removed for any reason, three surgery is typically either a urostomy that uses a piece of intestine to connect to the ureters and convey urine out of the body, or a neobladder that is likewise constructed of a piece of intestine but use the urethra to convey urine out of the body. The reason these are used is that it would be extremely difficult to do a connection directly from the ureters to the urethra, and without the one-way valve that they construct during ileal conduit surgery or neobladder surgery, there would be a high risk of life threatening kidney infections.

If it's truly a simple choice of urinary incontinence or urostomy. I agree with others that the choice can be put off until the child is old enough to have a say in which he prefers. Without more information, though, is hard to know the advantages and disadvantages of each choice. If it reduces the risk of infection or kidney damage, naturally it's up to the parents to make the best decision for the child.

The decision should really be made in close consultation with a pediatric nephrologist and/or urologist and a surgeon. They are the ones who have the information about what's going on with this specific child.

To address some other things that people have brought up, a urostomy would not limit the child's physical activities. A urostomy is more prone to infection than a normal urinary system, but whether it comes with a higher or lower risk of infection with this particular child's urinary system is a question for his doctors.

I certainly wish the best for your son, as well as you and your wife! I can scarcely imagine what you must be going through in having to make this decision.

 

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I'm late to the party and haven't read thru the thread, but I personally would very very strongly prefer to wear diapers than get an ostomy bag. But this is an incredibly personal choice.

My urge incontinence is severe enough that my dotctors have told me about bladder removal surgery as an option and I was shocked by it....I can't see how that would be better in any way than just wearing diapers and keeping my anatomy as it is.


For a 5 year old, i would wait til the kid is older an let him decide.

 

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Hey @MikeJames, your reasoning makes perfect sense to me! If it were me there is no way that bladder removal surgery would be a viable option to just wearing diapers and keeping your body as God gave you as much as possible!
I think most people who have to make a similar decision would also choose to stick to the diapers and say "thanks but no thanks" to the ostomy bag option.

 

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Thank you everyone for your help. With everyone’s input my wife agreed to wait and let him decide.

I have another question now. I’m trying had to teach my son self care and everything. The first thing I want him to be able to decide when he need to change. He either wants to change way to soon (barely wet) or waits until he has a leak. Anyway to Tell when you need changed without looking. I can’t really tell if he needs changed without looking, so I don’t really know what to tell him.

 

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Thank you everyone for your help. With everyone’s input my wife agreed to wait and let him decide.

I have another question now. I’m trying had to teach my son self care and everything. The first thing I want him to be able to decide when he need to change. He either wants to change way to soon (barely wet) or waits until he has a leak. Anyway to Tell when you need changed without looking. I can’t really tell if he needs changed without looking, so I don’t really know what to tell him.

5 year olds are hard and can vary so widely in where they are developmentally. All kids develop at their own pace and sooner or later they all catch up.

My son is 5 and has no such issues, but if he did, there's no way he'd be capable of diapering himself. I think with patience and time we'd be able to teach him to be able to communicate when he needs a change, but I'd say for you, in the meantime, you probably just need to stay on top of him and check in with him, maybe even check his diaper yourself until his judgement improves, and that will definitely come.

It took me a while as an adult to figure out when I needed to change. it takes time to really know what your chosen product is and is not capable of. It's easy to want to change too often for fear of leaks but these products are typically designed to handle multiple wettings. It takes a while to learn where that line is between too soon (wasting capacity and therefore $$) and too late risking leaks. It's going to be a learning process for all involved to be honest. Just be patient and do your best to never let your son even think that you're disappoint in him or upset with him or frustrated (even though frustration WILL happen and is totally normal....just don't let him see it).

Is he in school yet? Just curious how diapers at school will work. I think that is ultimately going to be the biggest challenge you face. Kids can be mean and until he's able to care for himself it's probably going to be very difficult for him to hide and keep private.

I do think you're making a good decision here though. My incontinence began in my mid 30s and within 6-8 month of my first bedwetting episode I found myself needing to wear tabbed diapers around the clock. It was (and still is) a lot to deal with. I kept an open mind to every treatment and tried 5 different drugs but drew the line at radical surgery. Having been in diapers nearly 5 years now I'm used to it and can live with it. Even on my worst days I have NO REGRETS about turning down the 2 surgical options (bladder augmentation and removal) that were offered to me. I know I'm much happier and personally better off in diapers than I would be with an ostomy bag. Ultimately your son can figure out which route is better for him.

 

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Hi Smith I liken it to any other thing I have to repeat multiple times a day.
Shut the front door after you.
Wash your hands before dinner.
Pick up your clothes off the floor.
It's like day after day for the last few years its a surprise. A bit of new ideas I ask daily, over and over.I've lived with my grand daughter since she was 4 she now almost 8. Children don't have the memory or mental skills so the constant reminders are necessary until the brain grows.
The good news is the personal care like washing with a soapy washcloth or brushing teeth nightly seems to be the first information that sticks.
I think the fact he is aware of a small wet is a good start to self care so reward that with a positive response because waiting until diaper is sodden is not a desirable result.
This is the only body he has ever known so it will be best to be a little ahead of the wet diaper than oblivious.
You folks are are going to have to spend money on diapers, no question. I think there might be color changing diapers for toilet training sold in stores for toddlers but i expect they show color for even minor wet they dont discern a little wet or a lot.

 

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@MikeJames
Yea I this point I ask him what he thinks then I will check for myself the try to explain why either it’s needed or can wait.
Yea I would rather change him a little earlier then later but don’t want to do it so soon that it’s wasting a lot the capacity witch like you said is wasted $$. Yea it’s a lot more difficult now that he is getting older. It is frustrating but I agree that is best not to show frustration to him about this. Due to Covid he school didn’t open or in class learning tell recently. Unfortunately when we tried to enroll him into in person learning, we notified the school about his disability. When they where informed they refused to make acceptable accommodations. So at this point we are keeping home for virtual learning and looking into other schools for next year. I was very worried about him going to school and getting bullied. Keeping his issues private is definitely why I trying to teach him self care.

 

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@Maymay941 Not wanting him to wait tell it’s soaked but has soon as he feels any wetness or has he say getting bigger he wants a change witch it way to early normally. I normally change if when they’d still absorbency left for a while just In case I can’t get to it, but not to early either. I don’t think he has totally figured out why he needs diapers because he never protest or complains. I’m afraid when he gets older that’s going to be a problem but right now he is happy with his body. We definitely spend quite a bit on diaper and other products for him. We couldn’t find a good quality instore diaper so with teal recommendation we tried northenshore. We where able to find a decent products on there.

 

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A little off-topic (ok, way off topic), but the school is required by federal law to make the necessary accomodations for students with special needs, at least if you're in the US. The term that gets used is free appropriate public education. The first step is to get the school to do an evaluation and formally recognize that he has special needs, then request an IEP (individual education plan) where the school has to come up with a plan for how they will meet his educational needs (which cannot be separated from his physical needs). They are then legally required to follow the plan.

It's not always as easy a process as it should be, but schools can't simply refuse to educate children with special needs, including physical disabilities. They have to come up with modifications to allow the student to learn in the least restrictive environment possible.

There are other federal laws that come into play as well once you're dealing with physical disabilities, but I'm less familiar with those since my experience has been with autistic children. It's worth spending some time reading - I searched for "iep incontinence" and got some very relevant articles.