Pseudo obstruction

Well, I fell asleep at 2am and the beetroot reappeared at 5am, but it didn’t help to get anything else moving.

Still no nausea or vomiting, so I’m not declaring an emergency yet.

I am going to try milk of magnesia, which is hard to get in Australia now, but I have found it in sachet form in the next town. I hope it works.

The magnesium hydroxide sachet (how it comes here) has just produced brown water, even at a low dose.

I’m out of ideas. I may have to live on 50% beetroot from now on.

It sounds like things are greatly inflamed. Is there anything you can take to reduce that? Aloe juice?

Thanks @Sara Marie. I don’t know that there’s inflammation, it’s just that everything has stopped moving. I have the urge to go, sit on the loo, but only a tiny amount comes out.

I am going to try enemas today. They don’t usually work for me but I’m getting desperate.

If I can’t get things moving today I will be off to hospital.

An enema can only work for stool backed up in or very near the pouch itself. If things are partially blocked upstream from that then sitting on the toilet and pushing will mainly produce hemorrhoids rather than poop, and clear fluids and time (and patience) are the main treatments.

Tried Foley catheter. Ouch. Nothing came out. When I removed the catheter, thee was a tiny bit of stool in it with what seemed to be undigested rice.

Waiting for chemist to open to get Fleet enema. Will empty bottle out and try warm water first, then the Fleet.

Have eaten more beetroot. Cannot understand how beetroot can pass through but nothing else. Is it overtaking?

Luckily I have a phone appt with GP at 10am.

There is almost no reason (IMO) to use the irritating Fleet solution, though the Fleet enema bottle is a very handy size and form factor for a warm water enema. The Fleet solution is designed to cause a rectum to contract, but J-pouchers don’t have rectums, and J-pouches don’t respond that way to Fleet solution.

@Scott F posted:

There is almost no reason (IMO) to use the irritating Fleet solution, though the Fleet enema bottle is a very handy size and form factor for a warm water enema. The Fleet solution is designed to cause a rectum to contract, but J-pouchers don’t have rectums, and J-pouches don’t respond that way to Fleet solution.

Scott F, I will do warm water and eschew the Fleet. Is bisacodyl going to be any help? I have megapouch, so the muscles in the wall of my j-pouch no longer contract, and it is very large and distended.

I am in the country, 2 hours from hospital with anyone who knows about j-pouches. Starting to get very worried.

@Scott F posted:

An enema can only work for stool backed up in or very near the pouch itself. If things are partially blocked upstream from that then sitting on the toilet and pushing will mainly produce hemorrhoids rather than poop, and clear fluids and time (and patience) are the main treatments.

Oh, sorry, I didn’t see this reply.

My pouch is full to bursting and the small bowel is backed up from there. I look like I’m six months pregnant.

There is no actual blockage, just stool sitting in an inactive pouch because the muscles in the wall of my pouch no longer contract (megapouch).

I am not sitting and pushing excessively, just trying to go normally when I feel the urge. Only a small amount comes out, e.g. 10mL. It is watery or porridgy, not dry, at least.

Have had plenty of fluids. Will have some juice shortly.

Edited to add: One way describe it would be that my j-pouch has almost no motility any more.

I wonder if a prokinetic such as domperidone would work to get the small bowel more active and push things through, given that my j-pouch cannot push any more.

Can you arrange a televisit with a doctor on your care team? I’m reluctant to encourage you to take nearly random medications to try to get some action out of your megapouch. I also can’t tell if the retained pouch contents are hard or soft. Have you had any experience with pouch irrigation, where fluid is pushed in, and then manually drained? Perhaps that’s what you meany by trying the Foley. You might also need to experiment with different positions, in case your megapouch gets itself blocked up in some orientations, a bit like a prolapse. A bathtub might give you more positional freedom. Good luck!

Does the mega-pouch go back to being a "normal" pouch, or is that it?  How does it lose its motility?  What is the beet root for?  I obviously don't understand this condition at all, and it's making me scared for your sake. 

@Sara Marie posted:

Does the mega-pouch go back to being a "normal" pouch, or is that it?  How does it lose its motility?  What is the beet root for?  I obviously don't understand this condition at all, and it's making me scared for your sake.

Unfortunately it doesn’t go back to being normal. I need to have either a re-do or pouch excision and a perm ileo. Am seeing a surgeon for a second opinion in about 2 weeks’ time, ironically.

Beetroot always goes through me really fast, so I ate it to try to get everything that is sitting around in there moving.

My dad is on standby to drive me to the hospital where my original surgeon works.

I am not vomiting or in pain yet. Just had half a bottle of grape juice. Fingers crossed!

@Scott F posted:

Can you arrange a televisit with a doctor on your care team? I’m reluctant to encourage you to take nearly random medications to try to get some action out of your megapouch. I also can’t tell if the retained pouch contents are hard or soft. Have you had any experience with pouch irrigation, where fluid is pushed in, and then manually drained? Perhaps that’s what you meany by trying the Foley. You might also need to experiment with different positions, in case your megapouch gets itself blocked up in some orientations, a bit like a prolapse. A bathtub might give you more positional freedom. Good luck!

No worries, Scott. I am really just thinking out loud at this point. I have a phone appt with my GP in 15 mins and my dad is on standby to drive me to the hospital where my j-pouch surgeon works if needed.

Pouch contents are soft. Yes, I meant irrigation with the Foley. I will try it again shortly. I had BPPV (vertigo) earlier this week and am still a bit wobbly.

To top it all off, our power just went off. It’s not a hot day, luckily, but my modem is off and I don’t want to run down my phone.

Power has gone off. Will report back later.

@Scott F

@Sara Marie

Thank you for your kind support today. I have made a small improvement with macrogol going in at the top and enemas at the bottom as per advice from GP. Bit worn out but no hospital today.

Hopefully I will continue to improve. Power is back on in time for dusk and I am going to have a short nap before resuming the regime.

Strategy that helped was lying down straight after enema, raising pelvis (“bridge” exercise pose) and moving my hips about to make the water sloosh around and start to dissolve the glob of rice and toast that is refusing to leave the normal way. Tried to do this for as long as I could hold it, e.g. 10–15 mins.

@Kushami posted:

@Scott F

@Sara Marie

Thank you for your kind support today. I have made a small improvement with macrogol going in at the top and enemas at the bottom as per advice from GP. Bit worn out but no hospital today.

Hopefully I will continue to improve. Power is back on in time for dusk and I am going to have a short nap before resuming the regime.

Strategy that helped was lying down straight after enema, raising pelvis (“bridge” exercise pose) and moving my hips about to make the water sloosh around and start to dissolve the glob of rice and toast that is refusing to leave the normal way. Tried to do this for as long as I could hold it, e.g. 10–15 mins.

I often find that positional changes help me, too, when experiencing digestive disruption.  I'm glad you "saw" the doctor and that your dad is there for you.  I'm relieved that you're not alone! 

I’m glad things seem to be improving. Gravity is important for pouch emptying, but you have to get more creative than “vertical” with a pouch that is partially malpositioned.

Going okay. Still slightly improved. Trying to coax small bowel back into action with some medium fibre foods.

Good news is that I am drinking freely and not vomiting.

If anyone wants to read about megapouch (it’s very rare), here is an article from the Cleveland Clinic:

https://sci-hub.se/https://pub...lm.nih.gov/30327916/

(You may need to click on “Save” in the little rectangular box under the raven icon on the left to read as a PDF if not on a desktop.)