Son has F.A.P, advice

Hi LilMoe,

I am very sorry to hear your son is still having these issues. It's really hard to know what is going on, but it is sounding more and more like a mechanical problem with his pouch. Sometimes with j-pouch surgery, there can be nerve damage, which may or may not be permanent, but may be affecting his control and causing continence issues. I understand that nerve issues are more common in children having this surgery than adults, but the good news is that these can possibly resolve over time.

I'm not sure what options have been discussed with the GI or surgeon, but considering it has been a year and he has not improved, it might be time to consider going to an ileostomy. This can be temporary or permanent. Given his young age, a temporary ostomy might be tried first, with the hope that he can eventually go back to the pouch. The surgeon can disconnect the pouch for a time, and then try again in 6 months to a year after the pouch has had a "rest" and maybe allow the nerve issues to resolve, if this is what the problem turns out to be. This isn't always a sure thing, but several people here have had temporary diversions which have allowed the pouch to heal, and they go back to it without issues. That being said, if it is determined to be a mechanical issue, a pouch revision might be necessary, which again would leave your son with a temporary ileostomy.

However, I'm also concerned with your son's mental health. Many people who go through these surgeries struggle with some form of depression, anxiety or PTSD, however, in your son's case it sounds like he won't improve much psychologically unless there is some "normalcy" back in his life--and this would mean gaining control over his accidents, and being well enough to go back to school. An ileostomy may help him get back on his feet and get back into a more normal routine, which can do wonders for him psychologically.

Best of luck to you and your son and please keep us posted on how he is doing.

I'm so sorry to hear about what your son is going through. I was always in the bathroom growing up and it wasn't until I was 18 that I was diagnosed with FAP. If you have any questions or just need someone to talk to (or your son) please don't hesitate to PM me.

Since pouchitis has been ruled out, I would suspect this is IPS (irritable pouch syndrome), essentially the same as IBS. The treatment is the same, low dose tricyclic antidepressants and/or antispasmodics. However, in a pediatric patients I am not sure what the protocol might be.

Certainly, anxiety is a big factor, although I am unsure how psychiatric treatment would help. Presumably this would be a pediatric therapist and he would find someone he can connect to and discuss his fears and anxieties. Having someone understand his real fear of public accidents would be useful. It is easy for others to say that it is not a big deal, but if it had ever happened to you, you'd know how mortifying it can be.

I think there are forums and sites like this for kids, and that may be something good to get him involved in. It is important not to feel alone. There are other parents here with children who have had this surgery, but most of them were for UC, so things were actually worse before the surgery. Still, hopefully, they will join in and give you some good advice. He is welcome to post here, if you think it would be helpful to him, but he might be a big young. Depends on the kid, I guess.

Oh, and kudos to you for being such a loving parent and wanting your son to be the best he can be!

Jan

FAP is rough. Feel free to PM me. I am a lot older though. Besides a temp ostomy a continent ileostomy could also help in terms of another option. I have a love/hate relationship with mine but would take it over other things.

I go to the bathroom maybe 2-3 times a day. If I have c.diff or some other nonsense maybe 5 times.