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Hi All,

I read often, but don't post too much.  I appreciate the wealth of knowledge you all have and feel grateful there is this space for those who need help, comfort, support, etc.

The reason for my post tonight is due to some "new" feelings/sensations I've been experiencing as of late, none to pleasant.

For the past 6-8 weeks, I've noticed a decline not in the quantity of BMs, but in the quality.  I feel as though I have larger urges, with less output despite more pushing/straining than usual.  Blood has made an appearance, though only a few times, not regularly.  My normally large amount of passed gas has seemingly disappeared, leaving feelings of bloating (extremely uncomfortable).  In the past, I have been able to lay face down and manipulate my body to assist in passing gas - this no longer works.

Additionally, I notice that after these dissatisfying BMs, I feel a bad sense of pain/pressure at the anal opening.  I can't tell if it's internal or external, but would guess internal if I had to.  This lasts for quite a while, longer if I allowed myself to sit and strain.  At times, it's so uncomfortable, I  can't sit. As you can guess, pretty debilitating overall.

My 2-step surgery was in 2004, with only small bouts of obstruction and pouchitis over the years.  My surgeon has retired and my GI moved on, so I'm waiting for my appointment with the new GI.  Anyone have any suggestions for self relief at home while I wait for my October appt?

(Currently trying to do mostly liquids, Atrantil daily, Iberogast weekly).

Thanks as Always-

Ken

Last edited by KennyJG44
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Poor pouch emptying is miserable. If it’s persistent it can be a sign of several possible things, including stricture, prolapse, and sometimes functional problems such as a spasmodic anal sphincter. I assume you aren’t taking any bowel slowers, and it’s worth thinking about whether the Atrantil or Iberogast could be involved (e.g. did the new complaints start after adding or changing the dose of one of them?).

If you’re desperate to empty your pouch you could try a tap water enema (easy) or pouch irrigation (somewhat fussier). I’d also suggest calling the new GI’s office to make it clear you’d be *very* happy to go in earlier if there’s a cancellation. You might ask them if there’s a waiting list, or if they prefer that you call back now and then.

Good luck!

Scott - thanks so much for your reply.  You are always right on the money with your info & advice.

Things I've been considering include stricture, prolapse or some type of awful constipation (ileus?)  My initial cause for taking Iberogast was as a prokinetic.  I feel as though, over the past few years, my pouch has "slowed" quite a bit.  I'm only good for 2-4 BMs per day, some of which take a while to complete (or not at all at this moment).  No change in dosage on either, to answer your question. No slowers either. I will be honest about not drinking enough water.  I've read on a few posts that psyllium husk can sometimes help - not so much as a bulking agent, but as something to help "clean house."

The reason for my waiting on this new GI is partly due to the age of my pouch, and fear of functional / anatomical issues.  There are some very good experts at NYU taking new patients.

At this point, I'm desperate enough to try anything safe enough to do at home. During this period, I've attempted one enema, but don't think I did it correctly.  I tend to be ultra conservative when self-treating, so it is a 30 minute process just to get an enema tip inserted.  I also don't know what the irrigation entails. If you feel either will help, please feel free to provide the how-to.  Even desperate enough to call and insist on a waiting list.  I'll be making that call weekly!

Thanks again!

Last edited by KennyJG44

The key difference between an enema and irrigation is how the water gets back out of the pouch. Irrigation sucks the water (and suspended material) back out, whereas an enema presumes the pouch can empty normally once the pouch contains a fluid suspension instead of solids. If you’re able to empty your pouch after squirting in tap water then irrigation is unnecessary.

But: why did the enema take 30 minutes? Pain? Fear? If your anal sphincter is too tight to comfortably insert an enema tip then you may have your diagnosis. You can add extra KY jelly to the tip, if the extra lubrication helps.

If you aren’t drinking enough water then you will likely end up in trouble (or may already be in trouble). Have you taken some time to think through why you aren’t getting enough? This is worth getting creative about, if that helps you - flavors, containers, mind-set, whatever. I’m confident that the work-up you’re facing is harder than consuming more fluid. I like psyllium, but it’s only a good idea if there’s enough fluid to go along with it.

Good luck, my friend. Go have a glass of water, or V8, or something.

Last edited by Scott F

I was relatively young when I had my surgeries (24), so I didn't ask a lot of questions and was just happy to be free of UC and feeling better / getting my life back.  I wasn't concerned about the new anatomy, and how it went together, etc.  I just focused on making sure no one touched it except for my surgeon.  Fast forward all these years later, and I certainly don't have the comfort level that many others on here do, with regards to inserting enemas, fingers etc.  I have been able to use enemas in the past for prep, etc.  But my last attempt to insert for rinse wasn't as easy.  I thought the tip was fully inserted, but after all that time, I had only gotten a small portion in (too cautious?).  And when I tried to squirt the water, I only got 1/3 of the amount dispensed, most of which ended up leaking out.  I don't know for sure if this is due to stricture, or fear, or both...or poor dexterity.  Is there enough space between the anastomosis and the middle of the pouch to get the entire tip in?

I will try it again and report back.  If I can't get a good insertion, or I don't pass the liquid after, that might be pretty telling.  Is it standard to empty the pouch immediately, or hold the liquid in for a short period of time? 
(At this point - I don't think I'll be trying to suck anything out).

Regarding hydration - the main reasons I don't drink enough are A) I'm never really thirsty, and B) it makes me feel bloated.  Prior to getting COVID two weeks ago, I had made it a point to drink more - but then got sick.  I will revisit that again (probably not V8, though). 

Would you put any thought into going towards a liquid heavy diet for now?  I still get hungry, but can attempt this if it might help things move.

Again - thanks for all the advice and kind words, always appreciate it!

Before you make it complicated, try drinking enough water 7 days in a row. Then at least if you still have problems then they probably aren’t from inadequate water. It’s been pretty hot in many places, and much easier to get dry in hot weather.

As I posted to you elsewhere, there’s no need to hold the liquid, but you do need to insert the enema tip fully and empty the little Fleet bottle pretty well. If it won’t go in with gentle pressure then maybe there’s a stricture.

Scott - will definitely do the 7 days of water, with the age old question being how much is enough?  Not sure where you are but we've been in a near constant heat wave up here in NY, so that doesn't help.  Routinely, I'm an AM coffee drinker and don't drink too much else throughout the day, so even if it doesn't improve my pouch function, I could probably stand to be better hydrated.

Regarding your response to me on another thread (RE: enema), I too would lay left with top knee up.  I can never be sure if the appropriate angle of insertion, how firm to push, and then also how hard to squeeze the bottle.  I tend to treat my anastomosis & pouch like a delicate flower - it's probably tougher than I think.

I also read up on @CTBarrister thread regarding spasms.  I don't have the immediate explosive BMs after eating, but I do tend to feel a lot of pressure, dull pain and discomfort at the anal opening for quite some time after BM...even will occur while I'm sitting (and waiting for something to happen) if I wait long enough. Obviously I can't see, but at times it feels like the muscles are quivering.

On to water drinking and flushing!

The most reliable indicator of hydration is the color and quantity of urine. It should be light colored, and there should be enough to make you feel like it’s time to pee at least a few times per day, preferably a couple more than that (especially for your experiment). Coffee will throw this off because it’s a bit of a diuretic, inducing urine production for reasons other than excess fluid. I drink coffee in the morning, but only after about 12-16 ounces of water. Boy oh boy do I pee!

J-pouchers only have one universal disability: reduced water absorption. If you don’t take care of that problem you aren’t likely to do as well as you could.

Hey All (or just Scott),

Tonight I re-attempted the tap enema process.  Again, no idea how some people do this in a few minutes, maybe I'm just not at that comfort level. Nevertheless, on my first attempt, I was able to fully insert and dispense about 2/3 of the bottle. I opted to empty immediately, and out came the water, plus any residual stool from a very small dinner.  Also, small amount of gas, which was quite a relief, as that has been hard to come by.

Encouraged, I decided to try again. After dispensing another 2/3 bottle, I re-inserted and got the last 1/3 out (practice makes perfect). This time, I emptied and out came the water, and then it was a hard stop, as if I could almost feel my pouch just say "nope".  If I had to speculate, it's as if whatever makes it to the bottom of my pouch passes, and then anything else that is upstream, doesn't (gas included).

I will continue with both the hydration and enema rinses 🤞

Thanks Scott - I was able to catch your last message when I woke up this morning, so I tried a more gentle push (as little pressure as I could manage) to see if it would help.  Unfortunately, not much of a change in output. Basically was a quick empty and then that 'hard stop' again, where I can basically tell that nothing else is going to happen.  The only positive is that I don't have as much pain/pressure, as I didn't sit and strain for an extended period of time.

I'll keep this in mind, and continue to try to see if it helps.  At this point, I think its fair to say that something is holding up good flow, whether its a prolapse, stricture or otherwise.  In the past, I've been very lucky to have any sort of issues sort themselves out, but this one doesn't seem to be going that way.

How long can I conceivably go on like this, without causing any damage, etc?  If I'm still eating/drinking, and not everything is makes its way, the excess has to be somewhere - will I be risking a perforation or something while I wait for my appointment?   I'm not one to panic, and usually have a high tolerance of discomfort, but this is starting to wear on me, as I really have only been able to get through a day at work and then I'm home laying down, resting (and praying). 

Any food/drink or OTC meds I should or shouldn't try while I wait?  I have searched "prolapse" and "stricture" a bunch - I dont' seem to recall anything can be taken that I wouldn't need to see a doctor.

Thanks in advance - stay cool!

I’m glad you at least ended up with less discomfort. It seems like you’re getting throughput, so you should be able to safely wait for your appointment. There really is no home remedy for prolapse that I’m aware of, though straining as little as possible may continue to bring relief. A stricture wouldn’t usually lead to the hard stop you’ve described, whereas a prolapse obstructs by moving into the way during defecation. I guess another possibility (I’m really speculating here) could be a hardened ball of stool on the blind side of the pouch, in which case the dance moves after squirting in the tap water enema described by @Pouch2021 in another thread could theoretically help.

A prolapse can’t usually be identified on pouchoscopy.

Thanks Scott - always appreciate the quick replies and vast knowledge.

Can you explain "blind side" of the pouch?  I might be misinformed, but I always assumed that most stool comes down from normal GI tract into the "afferent limb" (as I know it), and then eventually through the outlet.  Is it actually possible to have something move up into the other limb and still somehow block the outlet?  I know none of this matter as I can't really do anything about it - just curious.

Regarding prolapse via Pouchoscopy - thanks to you (and others) I've read that on many threads.  Unfortunately, there will likely be more waiting on top of my 2 month wait in order to get the right test scheduled (if they see fit).

In the meantime - I will deal the best I can and drink drink drink.

J-pouches are hand-made, so their exact dimensions vary. Ideally the original double wall between the two limbs is well opened up, but there will always be a bit of a cul de sac remaining (upper left in the diagram). I am *not* saying that you have something stuck in there, but I can imagine something like a fecolith developing there, particularly with inadequate hydration. Since I just made this up, please don’t treat it as a high probability.

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Unbelievable that after almost 20 years, I really wasn't clear on the anatomy of the pouch.  I always believed it to be a hollow vessel inside, though every single diagram is drawn with the suture line in the middle making it look like the 2 limbs are separated.   For whatever reason, the image you shared was illuminating in that it actually looks like 1 pouch instead of 2 "tubes."

In any event, I understand what you are trying to describe.  I will work on my enema skills and see if I can't get some water up to that tip as well!  Other than that, just waiting (im)patiently.

Thanks for everything!

KennyJ, I can relate to your symptoms. My pouch is almost 5 years old and I’ve had emptying issues ever since. I finally went back to Cleveland Clinic this spring and had a pouchoscopy, plus defecography and manometry tests. The pouchoscopy showed mild inflammation and “anal congestion.” It was not surprising  that my manometry test showed a sphincter squeeze score 3X higher than “normal.”  The theory is that I probably over developed the sphincters by clenching continuously to prevent a mucus accident after Step 1 (of 3). I was referred back to pelvic floor physical therapy.

Very interesting, hadn't really thought about that.  I've had 20 years if clenching/straining/pushing, so who knows what that might cause.

Another thing I've noticed, at least today, is that I might be having a bit of difficulty with urination now.  I notice that during my attempts to empty, I won't urinate, or even have an urge.  After I stop trying, especially if I have a little luck, I finally get the urge to pee, but nothing happens!  A few times I've had to wait for my whole " lower section" to calm down before trying to pee again.  Strange, and a bit alarming.  Even while I sit here typing, I have a tiny urge to pee, but if I mentally try to push ( for urination), nothing happens. Thoughts?

There are also pelvic floor exercises you can do to combat prolapse.  Acupuncture can also help.  I recommend "Listen to Your Gut" by Jini Patel (recommended to me on this site by another poster).  There is a section on the internal muscles and how to do various things.  It's similar to activating especially uddiyana bandha if you do yoga.  Mula Bandha can also be helpful.  Directions about activating those bandhas can be found in "Light on Yoga" by BKS Iyengar or probably on the web, too, but I didn't find any good instructions there. 

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