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I searched this topic on the forum and there wasn't much on it recently so here goes...

I have had my j-pouch for almost 23 years.  I have been on 360mg of Codeine daily for almost that whole time.  I started on the Codeine about 6 months after my pouch surgery and have been on it since.  I'm on my 4th or 5th biologic (Simponi at present).  I recently started recording my BMs.  I average 6-8 in every 24-hour period.  Should I be content with that?  I am very curious to know how other j-pouchers do in regards to the number of BMs per day.  I really would like to know where I stand.  I believe I was told I could expect 3-6 per day in an optimal situation.  Once again, I take a lot of Codeine daily.  Without it, I am quite sure that BM number would go way way up.  That's not really an option as I am dependent on it.  I have no idea if and / or how much the Simponi is helping.

The last MRI and scopes I had done were showing some inflammation in parts of my small intestine and near the rectum, but limited.

My GI suggests I stay on Simponi for now because if I take a break from it, there is very little chance it will work again (if it is n fact doing anything to help me) in the future.

The Codeine is really the driving force for my tolerable levels of output.  I can't imagine where I would be without it...

My 6-8 daily BMs has been fairly consistent most of the time.  I will try and keep a log for a longer period of time to see if anything changes.

Last edited by capper
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I typically go once or twice through the night.  Some rare nights I sleep through without going while others as many as 3-4 times.  It is often dependent on how late I eat / how much food is in my stomach when I hit the rack.  Another good stat I will utilize going forward.  I write down the time of each BM starting from midnight each day so this is already easy to see.  There is no question that I typically sleep much better on an emptier stomach than after eating very late at night before going to bed.  Does that mean I am always disciplined to avoid eating/ drinking late at night?  Absolutely not!

I have 6-8 BMs in a 24 hour period. When I have around 6 with minimal butt burn I consider that a very good day.

I have been taking 3-4 Loperamide daily for almost two years now, and that keeps my QOL manageable.

On the days when I have less than 6, the following day will there will be more.

I understand that my system wants to expel stool and not really retain it for any great length of time.

Last edited by New577

New577, that's a good point in which I tend to be in the same situation.   If I go through a rough few hours with several bowel movements,  it tends to slow me up the following day or few hours and limit my output for a while.

I have been using a bidet toilet for the better part of 20 years at home.  I have no idea how I could possibly get by without it.  When traveling, even for a night or two, I take a little hand held one with me.  This way, I use a bidet for a majority of my trips to the can and it literally 'saves my ass.'  If you have a j-pouch but do not have a bidet toilet in your home, I highly recommend it.  In fact, I would say it's a necessity.  You can always use a handheld one when you don't have access to one and it's needed.

Last edited by capper

Well…I go 12 to 14 times per 24 hr period for 3 years now.  I have tried Imodium and can’t seem to get the results I would like. It does slow things down but it turns into a difficult time to empty. I strain and strain.  I recently tried a prescription from my GI and had exactly the same results.  If I could just get past the straining part I could see the Imodium helping.  Not sure how you guys do it, maybe Imodium is not for me…

Our pouches gives individualized results for each of us.

While we can relate our generalized solutions , our bodies function differently, and we tend to have a YMMV results .

When I take a 4th Imodium I tend to constipate, and strain, so I tend not to unless I am really desperate for relief.

Perhaps your doc can prescribe lomotil, which is another bowel slower that some here use successfully.

there are some other drugs (codeine??), that I have read about here from time to time, that also offers relief.

Lomotil is what the GI prescribed and same result for me… if I take 1 Imodium nothing happens, but 2 it starts to work and then I strain.  It gets frustrating but I get used to the BM’s….the lomotil 1 pill seemed stronger than the Imodium and I strain….if I try not to eat then the output will burn…. I don’t get to down about it and try to enjoy life including the foods I love. 6 to 8 BM’s sounds awesome but it’s probably never going to happen for me

I tried Immodium in the past but only a very long time ago.  I vividly recall that it never worked well.  I found it difficult to regulate my digestive system and I believe it caused me to have several smaller BMs (hence l, the straining I see posted above).  I just couldn't get into a routine to empty my pouch.  It ended up causing more inconsistency in that I would bind up and then struggle etc.

It seems a lot of days I am somewhat regulated with my output.  The Codeine is definitely a huge part of that.  Not sure what role the Simponi plays.

I was traveling yesterday got home and ate quite late (8:30ish).  So I went to bed with a fair bit of food in my stomach.  I ended up waking up at 2am and 5am for decent sized BMs.  Then couldn't fall back asleep and another one at 6am.   Now, if I get up, take my Codeine on an empty stomach and have my standard bowl of oatmeal with fruit, I'll likely be BM free until mid or late afternoon. From when the next one starts I'll likely have 3 or 4 more before midnight.  Now that's an optimal day for me with a bit of a busy start...

That all said, if I go to bed on a full or semi-full stomach and I am really tired or take a muscle relaxant or some type of sleep aid (in other words I sleep really deeply),  I may wakeup too late if you know what I mean.  This doesn't happen often but certainly can and will.  It seems that this type of thing tends to happen in streaks, maybe 2 or 3 nights in a row but only once every month or two.

Last edited by capper

I was promised 6-8 times per day. I have never been under 10, but recently have been going to a pouchitis specialist. She believes she can get me down to 8 per day, once she has my inflammation under control.  She has me down to 10/day, which is heaven compared to 15/day when I first started going to her. Now if I could just sleep through the night..........

I’ve had my pouch for 33 years and don’t take any medication for it at all ( I take Cymbalta for joint pain from Avascular Necrosis and arthritis but nothing else related to UC or J-Pouch)….I probably go 8-10 times a day but have complete control and can hold it for long periods of time if I can’t get to a bathroom.  I agree with bidet being so helpful!!!  Didn’t know there were travel bidets…where do you find those?

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