HELP! My 13yo is getting Ileal Conduit in April

Is the artificial urinary sphincter an option?
Instead of Foley, why not condom catheters?
Could he gradually increase the size of the straight catheter he uses today to a larger size so he could go faster?

Just some thoughts. Maybe they are not options for him.

Here is a link to artificial sphincter: www.nafc.org/uploads///pdf/educational%20brochures/OnlineAUS.pdf

Sorry I can't be more helpful.

Mike

I think the main reason he doeesn't like to cath is the extra time it takes him. He never has mentioned any pain since the first few months which was several years ago now. The doctor's nurse called back today and said that he does all types of diversion surgeries but they feel this one is best my son. I think it is because he is prone to forget to cath sometimes and then his renal panel shows it. I think their main reason for putting it on the outside is to give him a reminder that he needs to think about this. He really understands his medical situation pretty well for a 13 year old and does very well with his diet but he is just 13 and does forget (or just doesnt want to/thinks he needs to, whatever) even with reminders set on his phone to go to the bathroom. Honestly, I am beginning to convince myself that this may help him to take this part more seriously and maybe later down the road they can go back and do the indiana??

MOTOMIKE: I think he is less worried about what other kids will say than anything. We homeschool and his friends are very understanding of his situation. He would only be going to functions with close friends and family or to the kidney camp they have in our state that he has attended for several years. We hate public pools anyway and usually go to a creek/river in the area to swim with just a few people we know. He will miss diving some but I think that is less of an issue than just being able to go to the creek and hang out. My concern with that is creek water isnt exactly sanitary. lol. For normal purposes, we dont care about that but when being concerned about risk of infection, I dont know that we can take that kind of risk. If the bag leaks OUT, it would seem that liquid could also leak IN and that is worrisome.

Where does the stoma actually come out and where do you wear the bag? He has worn a foley around for days sometimes and just straps a bag to his leg. It seems this would be higher up. Can you attach the stoma to a tube that goes to a bag or does the bag have to attach to the skin like a bandaid? How do you shower? Do you take the bag off during shower? Does the adhesive bother you over time?

I think an ileal conduit would be tricky for any 13 year old. I would not discourage him from baseball after he is used to the procedures. There is a little portable kit that he should keep handy. Swimming- might be more difficult in several ways. Kids are prone to call very unkind names. That can be devastating for your son. The bag will be visible even if he wears a t-shirt over it. Also remember the “appliance” is nothing more than a fancy stick-on plastic bag which would probably not stay put if he were to dive. After surgery a stoma nurse will be your important information source. There are dozens of different “appliances” for different body types and different activities. What works best will probably be a matter of trial and error. After 9 months I’m finding that a small belt holds the bag close against my skin and I can be much more active without leaks. I have a hot tub (spa) but I have not been brave enough to test the adhesives with 95-degree water. I’m not sure I ever will.

emr7888 -

Wow! Your son is dealing with a lot right now, and so are you. Each hospital stay is different and your surgeon can best tell you about time in the hospital. I wonder why he doesn't like to cath? Is it irritating or painful for him? I have an Indiana pouch and cath with no pain or problems. I think for an active teen it would be a better idea than an external bag that could become detached and create a mess. Either way it is possible to have an active life and do all the things he wants to do.

Please look at all your options and ask the surgeon about the indiana. If he didn't bring it up is it because he doesn't have experience doing them? Don't know where you're located, there are Drs. out there with vast experience and can help you.

Hope this give you some help.

Lynda

Hi. My son was diagnosed with neurogenic bladder 4 years ago which lead to renal failure before we knew what was going on or had a diagnosis. He doesn't have cancer but I am having trouble finding information on the Ileal elsewhere. Hopefully you will all be able to answer some of my questions. He has been self cathing for 4 years now and doing overnight foleys for about 3 months. This has caused a bad UTI that wont go away. The doctors proposed the Ileal Conduit back in January when he was in the hospital for renal problems again. With the neurogenic bladder, his muscles dont work properly to release urine and he can hold it forever! Becuase of his muscle disfunction, it seems he is not a candidate for the type of bladder that requires muscle usage to empty. He doesn't like to cath so he doesnt really want to go with the Indiana (but the doctor didnt even suggest that). The doctor hasnt called me back yet to answer my questions so here goes---


how long should we expect to stay in the hospital after having the surgery?
how much risk for site infection after it heals?
can he go swimming and play ball and other things with an Ileal? (big deal for active 13 year old boy)
what other advice, information or web links would you give somebody who is considering this surgery?

The urologist & nephrologist wants to do this in order to save his kidneys from further damage from urine backup and infections and hopefully prolong or bipass the need for dialysis/transplant.

thanks for your help in advance.