My son is 11 years old and has had his jpouch for 5 years. Overall, he has done really well. Our struggle right now is that he takes a really long time to empty his pouch … 30 min to an hour. He only goes to the bathroom 2-3 times a day. I have asked his doctor and he didn't seem concerned. He is now in middle school and missing large chucks of classes. I certainly don't want him going every hour, but it is hard for other people to understand that he can't help it and isn't goofing off. Anyone have any ideas to help him speed things along? He also has ADHD, Tourette's, OCD, and anxiety. He is only taking medication for the ADHD. The medications for the other issues constipated him, so we had to quit taking those. That was a year ago, so I wouldn't think it is a residual effect.
That's awesome that he only goes 2 to 3 per day, not awesome that he takes that long. I wish I knew. It takes me up to a half hour sometimes. I don't know why. Maybe we both need the pouch dilated. That means stretched by your surgeon. Have you talked about doing that?
I am super grateful that he doesn't have to go very often anymore. We struggled with that for a long time. I haven't heard of dilation. I assume that is just stretching the pouch? We traveled from NC to Cleveland for his surgery, so I haven't seen the surgeon for 5 years. I can email him and ask his opinion.
Try drinking significantly more water? Failing that a product like colosan or some other magnesium oxide product (which is basically Epsom salts btw) is probably safe for long term use. Again as it draws liquid into the bowel he will need to up the water intake.
The Victorians used to take Epsom salts regaurly for an 'iron constitution' which was basically the way of saying keeping everything moving. The only problem with Epsom salts is the taste horrible and they are hard to get a convenient pill form hence magnesium oxide.
These products are often billed as 'oxygen products' and has been speculated to help with ADHD and stuff too.. it's basically classed as a food so did be safe with doctors advice, and if you overdo it would just give diarrhea, but if you were planning to take it long term, and because a child is involved it may be worth mentioning to a doctor
Ps Epson salts are insanely cheap! Basically shall change for a huge bag, you could try getting empty gel cap pill cases and filling them yourself, but I found this fiddly. The more refined magnesium products are more expensive though.
By all means Google the heck out of this post lol
Epsom salts are magnesium sulfate btw, the more expensive products are magnesium oxide. The only catch is that taking a magnesium product can potentially impare the ability to absorb vitamins and minerals for 2 hours, especially vitamin C, so I would take the same time. If you did, worse case scenario nothing would happen and they would cancel each other out
I'm proposing you use a maintenance dose rather than a 'cleanse' dose. Sorry didn't think that was clear in my advice post
Could you try to see a gastroenterologist, as well as your son's doctor? Five years is a long time after his surgery. His body is growing and changing. It could be something as simple as changing his diet or adding the minerals mentioned above. Has he had a pouchoscopy? A family doctor won't know as much about gastrointestinal issues as a gastro specialist, who wouldn't know as much as the surgeon who created the j pouch. That's been my experience anyway. Could your surgeon recommend someone local so that you can build a relationship for future? Your boy is a brave little guy to have weathered such a big surgery at 6 years old.
I will do some research on the magnesium. That sounds worth researching.
David does see a GI once a year for a check up. He is 2 hours away, but we do stay on top off that. He had a pouchoscopy a year after his surgery and things looked great. He had blood work back in the spring (GI ordered it) and he didn't see anything amiss. I try not to do any unnecessary tests and scopes because it really causes severe anxiety for him. All the fear and trauma of his hospital stays come to the surface and it is awful. I will contact his GI and his surgeon and see what they can suggest and see if they feel he needs to have things checked out.
Even after 5 yrs, he can have strictures at the anal opening leading to the pouch entrance. Hence, if strictures present (which is scar tissue, narrowing of anal opening, dilation may be advised to "breakup" that scar tissue/ strictures", and dilation at the GI's office? It may be enuf to help improve him emptying/ voiding his pouch quicker. Questions to ask ur GI? (I regularly have to have this done.)
Is it painful?