I will also attest to this.  I have only needed to do the enemas a couple of times but it was suggested by my surgeon and approved by my GI.

I use a warm water enema every morning before work and sometimes in the evening. It works best if I retain it for at least 10 minutes and change positions. Lie on my back, stay on hands and knees after inserting, etc. It definitely helps with difficult to empty pouches. Ok’d by surgeon and GI.

Thanks so much. I don’t retain it at all -in, hold for maybe 10 seconds, and out along w everything I’ve eaten recently. My friend is the same.

I've been doing a daily water enema for at least 2 years now and I feel great afterwards. It's the only thing that really makes me feel empty. I bought a reusable enema bulb on Amazon. I can't find the one I bought but this is similar.

https://www.amazon.com/TopQuaF...aps%2C198&sr=8-4

I would advise to do it in a shower or over a bathtub (and not over a toilet bowl) as it can become explosive when it comes out. I have a hand-held shower head over the tub so it's great for cleanup.

I'm amazed at how much poop can get stored in the small intestine! Since I am now a vegan I eat a lot of roughage which isn't always a good thing in terms of bathroom trips.

I tried a tap water enema for the first time yesterday since getting the pouch in 2004.  Someone in this group posted that it helps with irritated fissures, and I was experiencing something like that.  He said the fissure scar can form a kind of pit in which fecal matter can get trapped and this causes irritation, which to me just feels like anal pain in a particular spot.  It felt great and decreased my irritation down to an itch.  Such immediate relief!  I'm a convert.  : )

I didn’t need these when my pouch was functioning well, as it emptied noisily and vigorously (ah, the good old days!). But now that I have megapouch and the muscles in the wall of my pouch no longer do anything, it helps a lot.

Funnily enough, when I first got megapouch, it didn’t work at all, and I would just get brown water straight back out, but this year it does work and often prompts a BM and emptying.

Just shows how our pouches can change over time.

Last week I was doing 3 enemas at late evening. One with 1 g of salt only and 2 with adding also the powder of 2 capsules of sodium butyrate, which should help build up the mucosa.

I think I overdid it a little with the amount of water, as I just read that the pouch has a capacity of only about 300 ml. I took 750 to 1000 ml, as I wanted to reach the last part of the small intestine also.

I had no problems holding it for 30 to 60 minutes, with hardly any urgency.

@SteveG posted:

Last week I was doing 3 enemas at late evening. One with 1 g of salt only and 2 with adding also the powder of 2 capsules of sodium butyrate, which should help build up the mucosa.

I think I overdid it a little with the amount of water, as I just read that the pouch has a capacity of only about 300 ml. I took 750 to 1000 ml, as I wanted to reach the last part of the small intestine also.

I had no problems holding it for 30 to 60 minutes, with hardly any urgency.

This is timely.  I was just trying a warm water enema last night to combat fissure irritation (used a small rubber bulb so probably not stressing the pouch too much) and I like the effects, however, I wondered what it would do the mucus lining of the pouch.  Do you combine sodium butyrate with regular salt, or can you use it by itself?  Also, where do you purchase your sodium butyrate?

An enema with water only should not have negative effects on the mucosa. I just added a little salt (normal salt without additives) to make it more isotonic.

I bought the sodium butyrate from Bodybio some years ago, it's not really cheap. I think there is a greater variety of sellers now. It is a supplement for oral use, a powder inside capsules. I also took it that way, but if I want to add it to an enema, I have to open the capsules.

There is no scientific proof of the efficacy of sodium butyrate against pouchitis, it was only found that people with pouchitis have lower levels of butyrate in the pouch as usual. So I simply try if I have positive effects with my currently low inflammation.

Yeah I didn't see anything about pouchitis in the studies.  They were about mucus lining issues because of UC or colon cancer treatment, both of which apply to me and probably apply to a lot of the people in this group. I posted a thread to see if others might share their experience.  Anecdotal seems like the way to go since, yeah, there are not very many studies on us j-pouchers, but with the way they're handing them out these days, you'd think they'd start including us!

So, do you notice any effects of taking sodium butyrate orally or in an enema?  In an enema, do you notice any difference between plain water and saline?  Do you notice any difference between the NaCl and the Na(C3H7COO) in the way your pouch or anus (or any other part touched by the water) feels after an enema? 

Sara, my current treatment with sodium butyrate is only for 3 days now, that's too early for a serious statement. I can tell that it does not harm me and that I can hold the enema for some time without urgency.

For the first saline only enema I chose an isotonic concentration of 9 g salt per liter of water which felt a bit irritating. I reduced to 1 g for the next enemas and added 1.2 g of butyrate also. Last night and this one I switched to oral use some hours after the last meal for comparison.

What amount of water are you using for an enema? I think that 300 ml should be enough to clear the pouch and 500 ml to reach way into the pre-pouch ileum also.

The enema bulb I got holds 224ml, but I am a small person, so I suspect my insides are smaller, but who knows?  I thought about filling it up twice when I used it for the first time last night.  Previous to that I just squirted some of the cold tap water using my handheld bidet once or twice, which was interesting.  I'm in Texas so the cold water isn't very cold right now.  Other than those few times, I have never really done much with enemas post j-pouch.  I ordered some sodium butyrate to try.  I get a lot of irritation at the anus and maybe sometimes a little further up and I thought supporting the mucous there and also washing out might help, and the enema experiment seems to be helping.  I have a fissure and a hemorrhoid and both sometimes get irritated.  I'm not sure if there is ever an issue further up, though sometimes I get a vague feeling of inflammation in the pouch area.  During those times I sometimes have leakage at night of a clear, stinky fluid.  I'm not having that right now (knock on wood).  I am not trying to treat pouchitis with sodium butyrate, but it would be cool if it were something that helped with the slight inflammation I get sometimes!

I think 224 ml sounds like a decent amount. I typically use the full 133 ml in a standard Fleets bottle though sometimes I feel urgency before the full bottle. Usually not though. I can often retain the 133 ml indefinitely and could instill more if I wanted. It’s difficult to account for how much is in the pouch to be begin with at any given time. I’m assuming usually nearly full in my case as I use in the AM and at night. On the last barium enema I had done for the tract he told me my pouch was intermediate size. I’m guessing it must hold at least 400cc. For reference I’m around 107 lbs (unfortunately).

@Pouch2021 posted:

I think 224 ml sounds like a decent amount. I typically use the full 133 ml in a standard Fleets bottle though sometimes I feel urgency before the full bottle. Usually not though. I can often retain the 133 ml indefinitely and could instill more if I wanted. It’s difficult to account for how much is in the pouch to be begin with at any given time. I’m assuming usually nearly full in my case as I use in the AM and at night. On the last barium enema I had done for the tract he told me my pouch was intermediate size. I’m guessing it must hold at least 400cc. For reference I’m around 107 lbs (unfortunately).

Yeah, sounds like we are close to the same weight, but that's a pretty healthy/normal weight for me because I'm 5'2".  Nobody has ever told me what size pouch I have.

I’m a bit over 5’6” and used to be around 125 before surgery. That was my ideal weight but I’d take 115 with some muscle. Can’t seem to gain it back even after 3 years. But I digress. Tap water enemas are my friend and keep me going.

@Pouch2021 posted:

I’m a bit over 5’6” and used to be around 125 before surgery. That was my ideal weight but I’d take 115 with some muscle. Can’t seem to gain it back even after 3 years. But I digress. Tap water enemas are my friend and keep me going.

Have you ever checked out "Listen to Your Gut" by Jini Patel?  There are all sorts of tips in there for managing our funky guts and I bet she has some info about gaining weight, too.  I really like the book.  I have an electronic version that I might be able to attach if you want to message me.  I got the info. from this group.

I’d love to check it out.

thank you.

and many thanks to Barbara baker who died in April, for telling me about the enemas. Why don’t more docs spread the word?

I use an irrigator set with a cup holding up to 1 liter. So I will fill it only half next time.

It builds up pressure as the cup is hung up at an elevated position. You start the enema by opening a valve at the nozzle, then you only have to wait till it's finished.

@SteveG posted:

I use an irrigator set with a cup holding up to 1 liter. So I will fill it only half next time.

It builds up pressure as the cup is hung up at an elevated position. You start the enema by opening a valve at the nozzle, then you only have to wait till it's finished.

How long does that take?  Do you lie down while it's draining into you?  I saw that set up was available at the drugstore but it looked like so much gear.  I was looking for something that would be small and packable, though your method sounds pretty gentle.

It's up to you what position you prefer. You can go down on hands and knees while doing the enema, I just squat a little and lean forward. It takes only a few minutes, you could even adjust the speed by opening the valve only partially.

Of course with that 1 liter cup and the hose it is not an ideal mobile device.

@Sara Marie posted:

Have you ever checked out "Listen to Your Gut" by Jini Patel?  There are all sorts of tips in there for managing our funky guts and I bet she has some info about gaining weight, too.  I really like the book.  I have an electronic version that I might be able to attach if you want to message me.  I got the info. from this group.

Thanks Sara Marie for the recommendation. The weight gain isn’t for lack of eating, other than perhaps not eating as much as I should during a busy work day, as I can really put food away. Completely omnivorous and eat a varied diet of largely unprocessed food though I have a soft spot for salty kettle chips. Eat full fat cheeses, nuts, tons of avocados, cook mostly with olive oil but do not avoid butter. Love shellfish raw and cooked. Eat spicy Thai and Indian. Honestly the foods that most on this site find best to slow the pouch and calm the gut are the worst for me. Rice, pasta, bread, crackers do not move through me. Pouch is happiest with fresh veg and protein. I eat everything though; just have less rice and more chicken korma than I used to! I think the difficulty gaining is from the persistent sinus tract and possibly ongoing chronic osteomyelitis. That constant inflammation really eats up the calories. For me, at least.