Hi, my son has been recently diagnosed with Irritable Pouch syndrome since they can't find anything wrong with his pouch, and he still has 15 Bowel movements a day and cramping. It has been already 1.5 that he was connected. They have given him Amitriptyline up to 50mg, and nothing seems to work. Any suggestions or ideas. Thanks
Replies sorted oldest to newest
Bentyl and Levsin are the best drugs to treat this condition in my experience. They must be taken 45 minutes before meals. With IPS which is also called spasmodic pouch, there is excess motility and it can be triggered by eating. My bowel movements all came in bursts after meals and if that is your son's pattern make sure the med is taken and begins to work before meals, not during or after. I never took amitryptiline although I assume it is an anti-spasmodic drug, like bentyl and levsin.
It's really important to understand biologically and anatomically what is going on and the mechanism of action of these drugs. Intestinal motility is thrown off by surgery and the body takes time to recalibrate it. In my case pretty sure I had the issue more than 1.5 years after takedown but it did eventually resolve. The anti-spasmodic drugs calm down motility of the bowel. They sedate the intestinal muscles in some way. There are side effects- they can make you feel a little loopy. But they work well when taken 45 minutes before meals in my experience.
I found that in my case the issue was an issue in the first few years after takedown. Eventually, motility should calm down and he shouldn't have to take these drugs at all. At a certain point in time years after having the Pouch it completely calmed down in my case and I haven't taken an anti-spasmodic in a very long time.
IPS can be a tricky diagnosis to make with confidence. Has your son had a course of antibiotics (Cipro or Flagyl) to see if they have any effect? Sometimes pouchitis is difficult to see.
There are also some basic things that can make a very big difference, and you haven’t said if he’s taking anything besides the amitriptyline. For example, does he take soluble fiber, like psyllium/Metamucil? Does he use a bowel slower, like Imodium or Lomotil?
Since I have had both Pouchitis related frequency and IPS related frequency I can say there is or was a distinguishing feature of each. With IPS the bowel movements come in rapid machine gun bursts and usually after eating. With pouchitis frequency is more spaced out and less machine gun like bursts. If you take bentyl and/or levsin 45 minutes before eating and you go from having a number of rapid fire BMs after meals to none at all, it's IPS. The meds will confirm the diagnosis if taken as directed and allowed to do their job.
