Help/question

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Hello I new here. I understand this might not be the place right place so I apologize. I have a 5 year old son that was born without a bladder. So he will never be to be continence. My wife/his mother is really pushing to have for him to get an urostomy bag. I don’t want to make that decision for him. I want to wait tell he is old enough to decide for himself. What is y’all’s opinion. How would you feel if that decision was made for you. Either by your doctor or someone else
Edit
A would you rather have a urostomy bag or would your rather have to wear diapers 24/7?

 

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I think that is a decision you your wife and dr. Need to make together. With information you gave I would side with you

 

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Hello Smith. Of course you are welcome herein!
It is certainly one of the difficult conversations you and your wife will have as you raise your son. Might be the best time to get a marriage counselor to learn how to have these conversations that will put you both on the same side against The Problem raising a child is challenging but dealing with chronic medical issues means you two will have to come to answer questions that have no perfect solution.

 

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I think his life would be closer to normal, easier, and of considerably higher quality if he was in diapers. Even finding a life partner will be impacted more negatively if he has to change more than his underwear every few hours. I can't imagine him not resenting this decision being made for him. If he wants to go this route, it should be his decision to make. I suspect there would be serious medical risks and life-long implications involved going this route. As a young child, he is dealing with what has always been normal for him. He will, at times be tired and fed up with it, but not like he will be if he has this surgery. This would be the wrong way to go. He's old enough to change himself, and pull ups would make it easier on all involved, if that's what is driving this decision.

 

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@dalexwitte doctor gave us the option. So it’s up to us.
@Maymay941 At this time we can’t afford a councilor but i do like the ideal

 

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@jeffswet that’s my thought and opinion. My wife doesn’t like that she has to deal with diaper and believes it will be easier. I don’t want to do what’s easiest just want Quality of life for him

 

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Hi
Every time I feel low because of my incontience I read of someone worse than me. I can’t imagine making that decision. I don’t know what your faith is but I recommend that you put this in Gods hand. I will pray for you and your family
God Bless
WHall
Philippians 4:6-7
1 Corinthians 2:9

 

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Greetings Mr. Smith,

Welcome to our little group of inquisitive people. I am relatively new here myself but let me assure you there are no wrong questions to ask. You will most likely receive multiple responses and it will be left up to you to decide how much you want to accept and how much you want to ignore.

Unfortunately, there is no easy answer for the situation you face. My personal recommendation is to defer any surgery or life altering decision today. I'd recommend that you seek out a family counselor to help you and your family work through the emotional and physical issues that you confront. In the absence of a family counselor please talk with your clergy or continue to discuss options with your doctor.

Greensleeves

 

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May I ask what exactly your wife doesn’t want to deal with. Maybe we can offer some tips and tricks to help make your live a little easier. I’m still very new to this but have learned a lot in a short amount of time. But the learning never stops.

 

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@trucker a this time my son is unable to change him self. He either can’t get the diaper on right without leaking or he complains that it is uncomfortable when he does it. Also matter how much time I spend explaining and teaching he doesn’t take care of his skin. So at this time I am still changing his diapers. Even with my changing his diaper he still has a lot of leak. My wife doesn’t want to deal with changing and leaking diapers

 

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I'm having trouble visualizing how things would be connected internally, since the letters usually don't connect directly to the urethra. Was he born with bladder exstrophy, where the bladder essentially developed outside the body?

If he were my son, I'd probably lean in the direction of urostomy. Before you do that, though, you might talk with his medical team about whether he could be a candidate for a neobladder or a continent urostomy, which is drained periodically with a catheter instead of needing an external bag.

 

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@ltapilot My wife had to have an emergency c-section because my son was under extreme distress. Well basically he was going into septic shock, because once the urine left the kidneys it just drained into his abdomen. The ureter’s were not connected to anything. So my understanding sense it was an emergency surgery the just tied them to his urethra. I believe I’m using the right medical terms.

 

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Sounds like the birth was very traumatic for your wife .
Unfortunately, kids his age dont take their muddy shoes off at the door or close the refrigerator or put their clothes in the hamper not the floor no matter how often we tell them to.
One concern I would have is chronic infection in a surgery when a child is going to be careless about all aspects of self care.

 

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@Maymay941 yea it was very hard on her. And that also one of my worries. We can’t even get him to brush his teeth without telling him to everyday he won’t take care of urostomy bag

 

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That's a child for you
And goes on and on..

 

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I don’t know much about the ustomy, but if it is permanent. He should decide for himself, once he is old enough to make the decision. A ustomy bag will also slow him down more and impact him more. Diapers won’t limit a young man from running, hiking, football, swimming. I imagine the ustomy bag would. Plus at five I doubt he would be at the spot he could care for it independently. Make sure you are making this decision not for convience but for his best interest. There’s nothing shameful about wearing diapers, even as an adult. If it is what he needs , then it is what he needs.

 

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My father developed bladder cancer 20 years ago. 10 years ago he had the bladder removed and a ostomy bag was installed (he was 80 years old at the time and had been delaying the operation for many years. His immediate reaction after recovering from the operation was "Why did I wait so long?" he was able to play golf, tennis and swim with no issues. I can't imagine how hard it is for you to make the decision you are looking at. My one question for you is: What is the downside of waiting until your son is a little older? If you lose nothing by waiting you can always go that route. Once the bag is installed you can't undo the operation. My father found it very helpful to talk to others who had the surgery before making the decision. Your son may benefit from the doing the same thing once he is a little older. The biggest benefit we can give to our father is not to make a big deal out of it. Make it seem as normal as can be. Good luck with your son.

 

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Hi @Smith, You have indeed come to the right place to discuss what's on your mind. And welcome to our forum! We are happy to help! If it were me, I would also opt for waiting until your son is old enough to help make a decision about the urostomy. Of course do get as many opinions as you can and discuss it with your medical people until you are completely satisfied with the answers you get. But from what you say about a five-year-olds' inability to self-care, waiting until he is a bit older and learns more responsibility about things in general may be the route to go. Besides if you wait a couple or three years or so medical technology may have advanced to give you yet even better options. But if you have further questions or doubts, please stop in and ask us.

 

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I was born with an underdeveloped urinary system. Very small bladder which is now useless. I was friends with a guy who was born without a bladder - until he moved out of state. Both of us were raised in diapers and still use them 24/7. I was offered a surgical option but turned it down. I like myself the way I am. I don’t want to be any other way. Your son is not facing a horrible life if he doesn’t have the urostomy bag. So you’ve got another point of view to keep in mind. Good luck.

 

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Hello I new here. I understand this might not be the place right place so I apologize. I have a 5 year old son that was born without a bladder. So he will never be to be continence. My wife/his mother is really pushing to have for him to get an urostomy bag. I don’t want to make that decision for him. I want to wait tell he is old enough to decide for himself. What is y’all’s opinion. How would you feel if that decision was made for you. Either by your doctor or someone else
Edit
A would you rather have a urostomy bag or would your rather have to wear diapers 24/7?

My suggestion is to get him some of the pull up diapers that pampers advertise or something similar.. they are a lot of kids older than five still in diapers due to one thing or another but during the day he should be able to be independent some. My sister teachers kids older than than five that have developed delay and still need diapers or pull ups and if they are mentally compatent then they are expecting to handle there own thing. You are right to worry about a bag thought. When I was facsing a ostomy they told me to except issue with it at first but luckily I didn't need one. A five year old is going to hate it.. let the boy be a boy. A pull up is not going stop that.