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I’m soo frustrated and don’t know what to do. Let me start by saying, I’ve had my jpouch for over a year now. I feel really good. My jpouch is healthy. No pouchitis, nothing like that. BUT...my jpouch will not empty unless I drink miralax and do enemas. A lot of times I still strain. It wasn’t like this in the beginning. First 6 months were great and then something changed. I eat healthy. Drink tons of water. I’ve already had all the tests- defecogram, anal manometry, scope. There’s no stricture. Only thing that came back a bit abnormal was manometry. Surgeon told me my sphincters must not be working correctly. The straining has now caused a mild/mod bladder prolapse. She sent me to pelvic floor PT. It has not been helpful. She’s offered me no other solutions except to increase miralax to 3 times a day which I’ve tried...it ends up causing me urgency as I can feel the liquid hitting my sphincters and I’ll be in the bathroom a bunch of times in a row. The miralax has to be perfectly timed with a meal to work right. I don’t understand why I can’t just sit down and empty out 4-6 times a day?! It’s always a struggle and I spend an hour at a time in the bathroom messing around with water enemas and laying on the floor on my belly, and doing toilet gymnastics to make something happen. Oh and I forgot to mention I can go like 18 hours without a BM. I’m not in pain, but feel full and I know the jpouch has got to be full. When I’ve had a long stretch like that and feel myself straining, I do an enema to go but then a little bit of the water enema always remains in the jpouch and I can feel it there, bugging me, making me feel like I need to go more. Has anybody else had this!? What can I do!? I live in Iowa. My doctor says I’m not a candidate for biofeedback and she doesn’t do Botox for sphincter. I’m so fed up with this issue!

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@Former Member posted:

Oh and I forgot to mention I can go like 18 hours without a BM.

Dang! I did not know that was possible for a J-poucher; I go close to 20x a day lol.

Please do not strain; straining can lead to hernias.

Are you taking any medications or started anything new??? ANd do you exercise???

I know lol, it’s crazy. Didn’t know it was possible either. I don’t know why and how my body/jpouch can do that. From the beginning, my body adapted very well. My jpouch acts like an actual colon. I will admit it’s kinda nice but the problem is I eventually feel a bit distended and have the urge to go but nothing happens! The stool will not come out. Not unless it’s practically water. My stool is always too thick. I’ve adjusted my diet, I drink a ton of water, miralax...and then I eventually end up doing the water enemas and that will clear stuff out. I do worry about the long breaks between stools. I’m afraid the jpouch or intestine above it will stretch out but my surgeon said no it won’t. I know the straining is bad. It’s already caused me a bit of a bladder prolapse which sucks! I have not started anything new or changed anything, that’s the weird part! It’s like one day my sphincter started acting up! If that’s even the cause of my issue. I do need to workout more lol, I’m sure that would prob help. Thanks for your reply!

@Kh1988 posted:

I know lol, it’s crazy. Didn’t know it was possible either. I don’t know why and how my body/jpouch can do that. From the beginning, my body adapted very well. My jpouch acts like an actual colon. I will admit it’s kinda nice but the problem is I eventually feel a bit distended and have the urge to go but nothing happens! The stool will not come out. Not unless it’s practically water. My stool is always too thick. I’ve adjusted my diet, I drink a ton of water, miralax...and then I eventually end up doing the water enemas and that will clear stuff out. I do worry about the long breaks between stools. I’m afraid the jpouch or intestine above it will stretch out but my surgeon said no it won’t. I know the straining is bad. It’s already caused me a bit of a bladder prolapse which sucks! I have not started anything new or changed anything, that’s the weird part! It’s like one day my sphincter started acting up! If that’s even the cause of my issue. I do need to workout more lol, I’m sure that would prob help. Thanks for your reply!

I am so glad that your surgeon said that it will not stretch anything out because that would definitely be concerning. I am sorry you are going through this and I am sorry about your bladder problems.

Workout tips: If you have shows recorded on your DVR, try working out in front of the tv to catch up on some shows. I like to workout while I am watching tv, that keeps me motivated lol. Putting on dance music and dancing to that works too. Try to put your workouts at 30minutes but no more than 1hr,  extensive exercise can cause: hernias, bowel twists, blockages, etc. So definitely take it easy. 30minutes- 1hr exercise sessions. Riding a bike is good too or just walking in general.

Eating and drinking: Drink water: before, during, and after every meal; I find that keeps things moving pretty good too. Oatmeal helps keep me cleared out too and move things along, try oatmeal

Good luck with everything and you are welcome

@Former Member posted:

HEY! I learned something new yesterday! There is a thing called SQAUTTY POTTY, I heard about it on YOUTUBE and the J-pouch woman on YOUTUBE said it helps her empty out her pouch great! Maybe you should try a SQUATTY POTTY in addition to what I said in my earlier comments

Thank you so much for replying! I’m going to try to exercise more and see if that helps! I’m drinking a ton of water and miralax. I feel as though my stool is a good consistency, it’s just my sphincter not letting it pass. I don’t have a squatty potty but I do have a step stool that I use sometimes. Maybe I should get the real thing! Haha

@Kh1988 posted:

Thank you so much for replying! I’m going to try to exercise more and see if that helps! I’m drinking a ton of water and miralax. I feel as though my stool is a good consistency, it’s just my sphincter not letting it pass. I don’t have a squatty potty but I do have a step stool that I use sometimes. Maybe I should get the real thing! Haha

You are so welcome!!! A step stool looks good too! I just looked at some pictures on it and it looks exactly the same just about, save your money lol

So what kind of exercises do you plan on doing???

Yes long hill walks are great for your core strength and digestion and pretty much everything,I walk for about an hour or more and when I get back or soon after I do a big emptying and it feels great.Its nice if you do a big fart at the end as well .🍑💨

Last edited by Former Member

Hi @Kh1988, Sorry, I'm jumping in kind of late to the conversation.  I feel ya - I do, and this topic is something I think about all the time.  My frustrations are same as yours, but a bit different, if that makes sense.  I'm 17 years with a J Pouch, 46 yr old bald man with a beard, glasses, 2 kids and a wife, and I call my J Pouch "Jimmy".

I have always had to strain more than the average bear, according to my surgeons and GI Docs.  My Doc always says not to strain but I tell him the alternative is to what - not go?  It's not horrible, scale from 1-10, in straining power meter, I'm about a 3 or 4, sometimes more but that's my average.  My Doc says I shouldn't strain at all, but I tell him I'm otherwise fine.  The 3-4 level of straining doesn't create any discomfort, only get a little raw sometimes, but that's probably from all the wiping - I go 6-8 times a day, sometimes more, less.

I will say this - about my diet, and how it effects my straining/not straining.  I agree with @Former Member , oatmeal is a dream cure, but it takes me a full day of oatmeal love, mixed with a ton of water, to get me back to normal.  That makes me strain less, but if I eat oatmeal more than 1 days, I get sad.  Not really, but I love food, love variety.  But here's the thing, it's totally self-induced straining caused - because I have a food diary and whenever my strain power goes to a 5+, and higher, it's all about what I ate the past week....too much of one thing, or too little water over a 6-7 day period.  I can eat popcorn, I can even binge on it, but only for one day.  My kids love popcorn and I am in LOVE with it, so - 2 or 3 days of even small amounts, in a row and that'll make my Jimmy Pouch mad.  Pizza, same thing, fried foods, same thing.  Hot/spicy foods, actually help me - for some reason, they help move things along.  Here's the thing....Vegetables and other high fiber stuff - HEALTHY foods.....are like eating popcorn 5 days in a row.  Eating healthy, low cholesterol type foods - for several days in a row and my Jimmy Pouch friend gets angry and starts making my toilet life very uncomfortable.  I also found that Wine - NO GOOD for Jimmy.  Beer - totally fine.  Whiskey - NO GOOD for Jimmy.  Vodka, even lots of it, up or on the rocks, no mixers - Totally Fine.  Vodka with super healthy pomegranate juice - NO GOOD for Jimmy. White Rice with crushed red pepper, spices and Sriracha sauce and pulled chicken - totally fine. 

I just started dating my wife 6 months after my friend Jimmy was installed.  It took us a while to get to know each other....so many questions, so many unknowns, so many challenges, but I started to treat him like a girlfriend, dating, figuring each other out.  Then, 6 months after I started dating Jimmy Pouch....I met my future wife, 16+ years ago now.  I ignored Jimmy and focused on my new girlfriend and it was horrible....but after a couple years, we got married and I started treating Jimmy with more respect, taking notes, food journals, behavior journals, stress levels, etc....and it really helped.

So....it's kind of a cost/benefit thing...which have taken ownership of.  Decisions I make, some are good, some bad, but who's to say which is which?  It's all just me.  I try to be a good friend to Jimmy.  He's a good friend but wow, jeez - when he gets angry, he has a very, very short memory.  He's like, who are you?  I'm not your friend, get a way!  He really needs a psychiatrist, but he's just being himself, which I can appreciate. 

What I'm trying to say in this ranty rant....keep doing what you're doing @Kh1988, keep trying different things, keep asking for advice (something I didn't do early in my J Pouch days)....I like to cook, more specifically, I like to experiment in the kitchen, LOVE it.  So, getting to know your J Pouch and what makes him/her happy or angry is like trying 50 or 60 times to find that perfect recipe for your favorite soup or chicken dish, or salsa, or whatever.  You are already taking it seriously, getting advice, asking your surgeon, medications...you're a year or so into a new relationship, and you're already married, there's no breaking up with our J Pouch, so keep trying to be the best friend you can and he/she will act like a humans person, more than we know, and love you back or drive you crazy...kind of like our first loves. 

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