Also wondering whether jumping up and down would do anything.

Are you sure it is stuck inside your pouch? Usually enemas should help with that if you do a little gymnastics / moving around before releasing again (I wouldn't jump around though).

If you are able to release most of the enema quickly, then I would suspect the (partial) blockage to be in the small intestine.

@SteveG, pretty sure. I don’t have the symptoms of a blockage. My pouch is huge these days (maybe five times its normal previous size).

Surgeon says I probably have a ball of sticky food sitting in there, with liquid and other food passing around it. I think he is right.

Trying Coca-Cola and prune juice today!

P.S. Enemas haven’t worked for me from Day One of my getting megapouch. Not sure why. No matter how long I hold in the water, I just get brown water out again. They used to work fine when my pouch was normal and I had to prep for a ‘scope.

If anyone is curious, this case study shows someone in a similar situation to me.

Warning: there is a full-colour surgical photo of the giant j-pouch being removed. It is not a pretty sight. Do not open the PDF if you don’t want to see it as it is on the firstbpage.

PDF link

https://casereports.bmj.com/co...2015-213662.full.pdf

They don’t call it megapouch (seems that term is not used in UK or at least wasn’t used when this article was written).

I am not suffering from poor nutrition and weight loss like the patient in the case study, but otherwise my case is similar to hers.

If the situation is as you describe it, there are two things to try in my opinion:

- Carefully massaging your lower abdomen when holding an enema or when you have drunk a lot of fluid and the pouch is filled. There should be more than just brown water coming out, why shouldn't the rice ball get dissolved?

- If that doesn't help, can you ask your gastro doc to do a scope of the pouch and try to dissolve that bulk of food with the water jet of the probe head (or with the picker for taking samples)?

Might I suggest putting your bottom higher than your hips?  The pouch is shaped like a "J" and maybe the rice is stuck at the bottom of the J part.  By inverting your pouch that may be enough to float the stuck bits to the least dependant part of your pouch.

I know when I have trouble emptying it sometimes helps to turn my pouch upside down.  This can be accomplished by the knee/chest position (get on your hands and knees.  Then rest your head on a pillow or the ground while keeping your bottom half elevated by staying up on your knees.  Stay there for at least 15 min or as long as you can tolerate and do gentle abdominal massage.). This also works for getting enemas to work better.

@Jaypea and @SteveG

Thank you for your helpful suggestions. I will give them a try.

I have a scope booked in in 3 weeks where the surgeon intends to “vacuum” eveything out so he can get a good look and then also do a contrast MRI. I justbwish it was a bit sooner!

Things are still moving through at a reduced rate. I have been measuring my abdomen and it hasn’t been getting any bigger. Plus no nausea or vomiting.

Last time this happened, about a month ago, things eventually started moving again. Not sure whether it was anything I did but I will keep trying.

Here is some info on megapouch from Bo Shen and Preeti Shashi.

Just putting it here in case anyone else has similar symptoms and happens to search on them or on the term megapouch.

We are few and far between! Only 23 cases found on the books at the Cleveland Clinic.

“Characterization of megapouch in patients with restorative proctocolectomy”

Abstract:

https://pubmed.ncbi.nlm.nih.gov/30327916/

PDF full text:

https://link.springer.com/cont...00464-018-6523-3.pdf

Megapouch is a rare functional complication of restorative proctocolectomy with ileal pouch-anal anastomosis characterized by pouch ± small bowel dilatation with no evidence of obstruction on endoscopy and imaging. Little is known about clinical characteristics and outcomes of this entity

…

Abdominal pain (82.6%) and bloating (52.2%) were most common presenting symptoms. Most common finding on pouchoscopy was pouch dilatation (81.8%), while barium or gastrografin enemas and MRI/CT mostly revealed dilatation of pouch and/or small bowel. Fourteen (66.7%) patients required some forms of surgery: six patients required pouch excision and three required either pouch redo or revision.

Also, massaging the abdominal & groin area can help move things around.  Even very gentle massage can help move the intestines. Not sure if the clockwise (right to left) rule applies to us j-pouch people. 

It's great you have a scope scheduled, but that is still a ways out and it is NOT comfortable to go through what you are experiencing. I am guessing you may be on a liquid diet at this point and that gets old quickly.   The most effective laxative I have encountered is not Miralax, it is drinking 16 oz of fresh celery juice from a natural foods or healthy-ish cafe with an industrial grade juicer. Whoa. It always works for me, usually too well. Just a note that home grade juicers don't remove as much as the celery pulp as the industrial grade juicers, and it would not be helpful to pile up more roughage type stuff at this point. Another option to try is drinking a quart of warm pho broth from a Vietnamese cafe,  without the noodles or other bits.  I also try the "acrobatic and yoga-ish" positions, walk a lot (but don't jump up and down), gentle massage, hot herbal tea, push my feet against a short step-stool while on the toilet.  I really hope you get some relief soon and wish you all the best with your upcoming scope.

Thank you everyone for your suggestions. I tried all of them, plus a few strategies of my own, and things are back on track.

I’m being very careful to stick to medium fibre food, nothing gluggy or sticky.

I will have my scope in 10 days followed fairly soon after by surgery. Not sure what that will be yet. Seeing two surgeons for opinions.

I have another uncontrolled condition (autonomic dysfunction, a bit like POTS) that I have been trying to get sorted for two years. My preference is to go to a loop ileo as a temporary measure, giving me more time to get the autonomic problem under control before I make a final decision.

Thank you again everyone!