@SeattleJane posted:

@Petey12 Hi - how did your gastro figure out your muscles are not working properly? I do not know why (yet) but I have been struggling mightily with constipation. I am trying suppositories, warm water enemas and Miralax, but sometimes nothing works. My gastro doc is booked out many months, but I want to be as educated as possible as to what to ask her.

I had an anorectal manometry test done which revealed anismus and got me diagnosed with IBS and pelvic floor dysfunction. Not a fun test, but I'm glad it helped me get on the right path to feeling better.

You can read more about the test here: https://my.clevelandclinic.org...-anorectal-manometry

Here's more info about anismus: https://my.clevelandclinic.org...ssynergic-defecation

Hope you get the answers you need to start feeling better soon!

@SJAN810 Wow. Thank you so much. What a super helpful, informative reply. And quick! What a gift. I had zero clue such a test existed. It sounds like it could explain a lot - or rule it out at the very least. The link you sent explaining what to expect in the test answered a lot of questions. It does sound like a whole lot of "not fun", but sheesh, the good news there is having a j-pouch means having lots of experience with "not fun" tests and procedures, so I am fully confident I can handle it. Thank you, thank you!

@Pouch2021 Did you ever figure things out that worked? I’m four months out from takedown and pretty much antibiotic-dependent. Scope on antibiotics showed no inflammation, so looks to be bacterial overgrowth. I read a great article by Dr. James Church who said in this type of case, don’t take fiber, don’t take Imodium, and do take Miralax to keep things moving and not let bacteria set in. Anyone know the best time of day to take Miralax. Bedtime not good for me, as when the problems flare, I have nocturnal leakage. Ugh. Anyone have any similar experiences? I’m hoping with time I can get off antibiotics, as when I’m on these, all the J-pouch issues fade into background. But when I’m not on antibiotics, everything flares - pain, burning, incomplete emptying, constipation, cramps, incontinence, etc. - and life is a lot less fun. Thanks to anyone for any tips!

Please read SJAN810 reply and click the link to the anorectal manometro test. In there they also list treatments of biofeedback and pelvic floor therapy which I highly recommend. It has helped me greatly understand what was going on. It is common with pouch surgery for muscles to be damaged, and therefore not function correctly. There are many things that can go wrong but there are therapies for them. Most doctors are like “it’s pouchitis so take Cipro” but there may be more to it.  I also can tell you drinking water throughout the day, and alternating mushy food with non mushy food helps.  Furthermore, on days that I don’t eat a lot, I feel better. It’s almost like my whole track needs a break. I hop this helps.

Thank you @Petey12