My son says he cant feel ????

I'm really sorry your son is going through this. To be honest, this doesn't sound like a normal course post-takedown. While many pouchers do have nighttime incontinence in the early stages and wear diapers at night, it sounds like your son is incontinent all the time. This is far more rare, and I wonder if maybe there has been some nerve involvement. Sometimes that is temporary, but it is something to look into. Is he taking imodium on a regular basis? What about anti-spasmodics? Recovery might be different for younger children than teens or adults, but there are several parents of young children who have gone through the pouch procedure who post on this site, and I don't recall incontinence being a major issue. I've ben following your posts so far. It seems like you've had regular doctor visits since your son's discharge; perhaps it's time to consider getting a second opinion? I know you are a ways off from the Cleveland Clinic, but many people with complications end up going there with good results. I'm sorry I don't have any other advice to offer, but I really hope you can get to the bottom of this. It's bad enough going through these surgeries as an adult; I can't imagine what a child experiences.

i agree with spooky, she is much better than me with words! second opinion is a good idea

Yes his surgeon see him every week. But im waiting to see his GI doctor. Lets see what hapoens thursday.y

I was just going to recommend you take him to a GI. Sometimes they are far more experienced and care a lot more with post surgical problems than the surgeons. Do you know if your GI has a lot of knowledge of expertise with jpouches? This would be very important. Your son's situation does not seem the norm. And some of us have had problems immediately from day 1 of takedown. And though many docs,nurses, and even jpouuch.org posters say to hang out, wait, and it will get better.. if there are functional problems... they need solving before things have any chance of getting better. Please ask your GI how much experience he/she has treating problematic jpouches. If it is not significant, please search for another doctor. Your son needs some help. He shouldn't be suffering like this.
good luck.

im callin GI monday. cant wait till aug 15.

Yes, children's nervous systems are different than adults, immature and do do not heal at the same rate. I hope he has a pediatric surgeon and GI, because pediatric is a subspecialty.

I seem to recall that incontinence was more common and longer lasting after this sugery in children, and the younger they are, the longer it takes. Plus, with a FAP diagnosis, it is more likely that a mucosectomy was performed, increasing the risk of permanent nerve damage. It also sounds like he needs treatment for the rash too.

Good luck!

Jan

yes both surgeon and gi are pediatric... one of the best hospital in new york. he goes to children hospital

please lilmoe.. ask about their experience with jpouches. This is very very important. Make sure you are dealing with doctors who are very experienced with jpouches and in cases with "problematic" jpouches. They may be the best in your area.. but if they don't have jpouch knowledge and expertise.. they are not really able to help your son. "I've been there, done that with so-called best doctors in the area" You are speaking up well on this board for your poor son. So please speak up, and ask questions of his doctors.

Also, don't be afraid about taking him back to the hospital. Sometimes, if you go to the ER and he gets readmitted he might be able to get help faster.

How is he doing? What did the doctor say at this weeks appointment. I hope you are both feeling better.

My son is going to bathroom max 10 times now. Was 20 before. Still need diaper but we tryin underwear at home and see how he holds. Dr checked his bottom and he said it felt fine. Wasnt tight. He doubled up to 8 imodium a day. Questran 4 times. Metamucil 3 times a day. Water baths and shower. No paper toilet or wipes. His butt less raw gettin better. He has been holding his stools and notndirtyin pamper certain days. He is now walking a few blocks back n fourth. He was walkin crooked and now he is straight. Doin treadmill on slow to get strength. Lil tough nine year old i got. He does get tired quick and needs to see. Feels a pressure in his butt at times.

Thanks you for updating us! He is a tough lil boy!