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I’ve had my j-pouch since 2007 and I’m 32 years old. I know which foods to avoid - typically vegetables (unfortunately) and certain fruits. However, I have this constant feeling of discomfort that is a little hard to explain. All of my “pouchoscopies” have shown my pouch is healthy and normal with the exception of a little inflammation a couple years ago.

I feel like when I go to the bathroom I’m never fully emptying my pouch. Like there is always something “stuck” or some gas or some type of pressure. At this point I think I’m just so used to it that I don’t even realize how uncomfortable I am half the time.

The only thing that sometimes helps is Linzess. It makes me run to the restroom quite a lot, but really cleans me out and makes me feel like my pouch is truly empty.

I also get the sensation that this gut health issue or whatever it may be, is linked to my depression. Maybe I’m crazy, but I feel like this discomfort affects my mood.

Any supplements or probiotics I should be taking regularly?

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Hi there--I had not heard of Linzess before and just looked it up. Interesting. Right after I have a (loose) BM, I do feel empty, but it does not take long for me to have feelings in the pouch again. I suspect much of this is gas. I honestly have learned to live with the feelings. You did not mention having frequent pouchitis, which some doctors think is related to the pouch not emptying completely, so I am wondering, if like me, you are just feeling gas, etc. Honestly, the small intestines seem to be always churning food through the system, so it is not surprising to me that I feel something not long after emptying. I have just chalked it up to the way it is going to be. The only time I felt completely calm and still in the GI system is taking antibiotics.  It seems that some people take imodium or use thickeners (psyllium husks) to slow things down. You could try this.  There ae also probiotics, as you mentioned, (I eat Nancy's probiotic yogurt nearly every day), and there are herbal supplements, such as Dysbiocide and FC-Cidal or Arantril (sp?). I take these when I feel pouchitis or GI distress coming on and they seem to help.   I am sure others will comment here, too, and offer their thoughts. 

R

Psyllium husk (only organic powdered works for me) helps my stool bind together and come out more completely. I have experimented with amounts and find that if I take a heaping teaspoon in water before each meal, it has the best effect for me.  Everyone is different, though.  I also use a manual technique to squeeze out the gas and any leftover stool that isn't triggering the bowels to eliminate.  I have discussed this with another j-poucher on this forum, and we both came upon this method in separately, organically, and without guidance from a doc.  I used my knowledge of infant massage and then experimented with massaging the area in between the belly button and the pubis.  Neither of us would like to imagine how we would manage the j-pouch if we didn't use this technique.  Let me know if you want a description and I'll see if I can get my buddy to describe how he does it, too.  We were going to start a thread about it to share our experiences, but just haven't gotten around to it yet.

SM

Ok!  For now I'm copying and pasting out of my part of a message exchange with DF, so he can chime in if he sees this to explain it his way. 

I push all four fingers of both hands into the body under the belly button on both sides (down and in against the front of the lumbar/sacral area) while bending forward, hands faced towards me but slightly angling in, and then to get traction I bend forward and push my knuckles against my top thighs.  I repeat this downward motion, like you'd squeeze a tube of toothpaste, but until I feel emptied.  I can kind of feel it when I trap something and I push to help move it down towards the anus.  Sometimes I need to massage to find the stool or gas, then once it is trapped, I just maintain pressure until it moves down. When gas or stool is close enough to the anal opening, it seems to trigger the muscles there to release the stool or gas. I use that in combination with internal muscles, lightly bearing down, but only when called for, not constantly.

It seems like the reflex to excrete doesn't get triggered enough by what doesn't come out initially, plus the colon is the organ that has that internal massaging action that moves the stool out, but since there isn't a colon, it doesn't happen.  So I'm basically creating that missing action from the outside.

After I'm done, I massage back upwards to balance out the downward action and avoid prolapse-type activity.  I also practice a couple internal locks described by BKS Iyengar to help tone and strengthen the internal sphincters of the digestive system.  All these things I have learned by experimentation on my own body.  If you do find something that helps, please share!  Your body might need it done differently.  DF and I found that our actions are very similar.

As an additional tool for gas release, I do a lot of inverting.  If you don't want to go upside down, lots of people have found lying down on their side (especially on the right side) or on the stomach works pretty well. 

SM
@tf posted:

My go toos are psyllium husk, hyosiomine & my bidet.  The warm water & pressure cleans me out.  I go less but stay on toilet longer because it takes awhile till I feel empty.  Now my coccyx bone & lower back are aching 😫

I looked up hyoscyamine-tried to look up "hyosiomine" but the internet corrected me. Hyoscyamine sounds intense!  Is that what you meant?

Do you use your warm water bidet for an enema?

SM
@Sara Marie posted:

I looked up hyoscyamine-tried to look up "hyosiomine" but the internet corrected me. Hyoscyamine sounds intense!  Is that what you meant?

Hyoscyamine is the generic of Levsin. It is an anti-spasmodic that is typically taken 45 minutes before meals to calm down a spasmodic pouch. What it's really designed to prevent is machine gun bursts of bowel movements after eating meals due to the bowel spasming or excessive motility. I don't think it really has anything to do with incomplete evacuation of the pouch. It's designed to prevent the opposite problem of explosive diarrhea due to spasms of the pouch or bowels.

There could be various reasons for incomplete evacuation. One is a mechanical issue with the pouch and another is inadequately treated pouchitis. I have dealt with both- the former was corrected surgically (2 surgeries actually), while the latter is usually corrected by taking cipro and flagyl. I think it was once explained to me that inflammation of the pouch causes it to lose its elasticity and become rigid. which in turn causes issues with properly and fully evacuating the pouch.

CTBarrister
Last edited by CTBarrister

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