HELP! My 13yo is getting Ileal Conduit in April

13 years 1 week ago - 13 years 1 week ago #36948 by mmc
Well it certainly sounds like somebody needs to invent a pressure relief valve that could be inserted at the bladder sphincter that would cause a release of the urine prior to backing up to the kidneys. That is, if somebody hasn't already.

I just keep thinking if it were me at 13...
Seems like a urostomy device like that could be pretty defining to a teen who is either just starting to get concerned about body image or getting pretty close to the age when he will.

If that is his only choice, then I guess there really isn't any choice at all. That's kind of too bad.

While a urostomy bag is certainly not something that will stand in the way of many things and he will be physically able to do most everything, I just can't help but think of the psychological side for one just entering his teens. Getting one at my age is one thing, but at 13 is something else altogether.

In case nobody is catching my drift, I'm kind of hinting at "WHAT ABOUT GIRLS?". I'm sure there are those that would say "Any girl worth it would not even consider the urostomy, and what not." My reaction to that is "Yeah, right. Think back to when you were 16 and tell me it would not have mattered to you at all if a member of the opposite sex had a urine bag attached to them". When we're older, we're not quite as shallow as when we're teens. It's hard enough getting through the teen years already. Makes me kind of sad for him that no other options seem to be on the table.

I certainly hope all works out well.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 1 week ago #36943 by eddiek
Hello emr7888,

My name is Ed and my wife Cynthia has an Indiana pouch which for her was a good choice.

In reading all of the posts, I'm not sure if all of your first set of questions were answered. I'll try to answer the ones that I can.

Q: how long should we expect to stay in the hospital after having the surgery? A: As with most things, it depends upon several factors. Typical hospital stays can be as short as five days to as long as several weeks. There's also some indications that whether the surgery is preformed using the conventional technique or using the robotic technique affect the length of hospital stay. I believe that Cynthia was in the hospital for about 11 days. I don't know how much you know about this operation, but it's major surgery. Not only is the bladder removed, but the procedure also involves removing a portion of intestine to obtain the material for the stoma. So, they won't release him from the hospital until his digestive tract is functioning to some degree.

Q: how much risk for site infection after it heals? A: From what I know about this type of diversion, unless something is wrong with the bag's connection, it only needs to be changed every few days. However, proper hygiene is required when maintaining the connection site. Following surgery, you'll receive care training from a Wound/Ostomy nurse.

Q: can he go swimming and play ball and other things with an Ileal? (big deal for active 13 year old boy) A: Can't offer any advice, but it sounds like there were some good answers in the previous posts. One thought given that he's an active teen, he should probably care a small "kit" of supplies needed to replace the bag in the event of a problem, hand cleaning/sanitizing supplies, spare adhesive wafer(s), and bag(s).

Q: what other advice, information or web links would you give somebody who is considering this surgery? A: Following surgery, make sure that he starts walking as soon as his doctor's allow, exercise is very important to a timely release from the hospital. When he comes home, don't forget that he's also recovering from intestinal surgery, so he won't want to eat too much at one time; several (5-6) small meals each day will work best. Also, meals that are easy to digest will help him recover. I got real good at making Cynthia small amounts of mac & cheese!

Sorry to hear that your son needs this radical surgery, but it sounds like his doctors are working to protect his kidneys from the affects of urine retention and subsequent infections.

Please keep us posted on how he's doing.


Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Treasurer/Secretary

& Caregiver

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13 years 1 week ago #36938 by emr7888
mmc wrote:

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13 years 1 week ago #36931 by emr7888
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?

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13 years 1 week ago #36930 by mmc
As a follow up to something you replied to Motomike:
The ileal conduit (outside bag) involves using an adhesive to attach a plastic bag to the stoma which protrudes a bit from the skin.

The Indiana pouch is not a bag. It is a pouch made from a segment his own intestine to replace the bladder. I'm not sure why your son would need his bladder removed at all. It basically already is a "pouch" if he doesn't have control of it but it does hold urine. Seems like they could create the stoma hooked to his existing bladder. The stoma could exit the body at the point of his belly button and would not even have to protrude. He would just catheterize at that location and nothing would be visible to others in gym class or any other time he might find himself naked.

Seems awful young to need an external bag if there are any other options.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 1 week ago #36929 by motomike
I just measured my stoma. It’s 2” to the right of my belly button and about 1 ½ down. I only shower between bags, but sponge bathe other days. As a test I just wore a new type bag (convex shoulder) (with belt) for 6 days with no problem. It was a sample from the manufacture on the advise of my stoma nurse. I’m delighted with this new setup & will be changing to it.

One of the guys in my motorcycle club is a long haul trucker and uses the leg bag so he doesn’t need to make as many truck stops. I’ve seen them on catalogue sites but I’m retired and there is no need for it. I just go to the toilet. There is a handy little plastic valve at the bottom of the bags. I use the collection tank at night and sleep uninterrupted (but always on my left side).

I can see the ileal conduit (IC)to be the way for a 13 year old to go. I wouldn't be surprised if he gets the routine down faster than I did! It wasn't until I got the bag that I realized how, being right handed, my left hand is almost useless. He can even decorate the bags for the season (green today)(& maybe become a real artist)! :X

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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