O.. Sweet Precious Sleep...

Richard-

I almost always sleep through the night, but I wouldn't think of going to bed without taking the time to empty my pouch fully. If I didn't empty before bed I'd be up every night, I'm sure.

I try.
But that is what one of the problems I have had since the beginning.
It cycles over time when I can empty it.
And even then I cannot fully empty.
I have to push so hard most times and that is not right.
Sometimes it comes right out but seems like so much no way could my pouch hold that much and seems like it's coming out of the intestines also. 
And sometimes when I do empty I can tell it fills right back up after I get up and move around then I have to go again and gain until there is no more.
You and others like you are kinda lucky you can empty at will and feel as though or know you have done so.  I don't feel that.  This is why I need to shut it down and go the other way.  It's not and won't work right and it's not healthy for me to keep going this way. 
I need to also gain weight and soon.  I keep losing.  I m going in the  wrong direction. I can see it in the mirror.
I am way too skinny and it's been that way for almost two years.  That is not healthy.
Richard.

Richard-

You won't be successful (IMO) until you find a way to reliably empty your pouch. I'd keep looking until I found a doctor that could figure this out, even if I had to go to Cleveland to do it.

 

In the meantime, you could discuss with your doctor alternate emptying methods. A tap water enema might be sufficient, but if you can't get your sphincter to open (or corrdinate with the rest of you), then an irrigation catheter might do the trick until you've worked out a definitive solution. Some people have irrigated their pouch for years, but I'd only recommend that if no other reasonable solution is possible.

 

Straining may be making your problem worse, by closing things up when you push. It sure as heck isn't helping. Good luck!

I know straining doesn't help.  It just ends up that way after a certain amount comes out.
Like I have said in other posts I have to get my weight back on. 
I'll be blunt.  It's gonna kill me if I wait to find out ways to MT it.
If it is not working after two years it's not gonna work.  I don't want the pain cramping blockages and everything else just to save it.  It  know an appliance has its problems but nothing like this.  I feel as though it  is worse now with a pouch than with a colon. 
When I went into this they just wanted to bag me.  But I wanted to try the Pouch.  I did.  Disappointed it doesn't work properly but I have to face facts.  I don't believe I have the time to run to 3-4 more opinions.  I have two already.  And they see no reason why it should not be working properly.
So.... Now I am losing sleep literally. Nobody wants to lose their pouch but I am not going to spend two more years to try and find an answer.... And then there are no promises.
The one thing that concerns me and the people around me is my weight.  I look like death is coming.  Especially to my wife of close to 40 years.  It scares and upsets her to see me this way.
I do see that I am skinny... Too skinny.... But I don't see what others see as said above.
Yes. I am stuck between a rock and a hard place.  I don't want to lose it but I also cannot keep going this way.  Sure.. I would like to be talked out of surgery again and not wear a bag.
I just have to get my mind wrapped around this.
It's full of questions that cannot be answered quickly.
As you can tell in my post my mind is a whir. 
Richard.
Edit.
Add on...
I believe I will gain the weight back and be able to sleep all night.  It will be tough but time will get me used to the bag. I am already wearing one as a test and most time I don't even know it's there unless I touch it or have to use the restrooms.  Someone here suggested this.  It's a good idea.  I never wore one outside the house.  Unless it was Dr appointments or ER.  I wore it to work... Of course I am just wearing it and I don't have a stoma yet so it's not a complete feeling of wearing a bag.  But so far I am comfortable with it.  And believe me I have had many times where it would be so much easier to empty the bag than go through some of this.

Edit again.
Thank you Scott.
I will ask the catheter question and others at my next appointment.
This is why I am waiting until the end of November.
BCIR and Kock pouch is out.
I asked she does not do them.
She said I could get a referral if I wanted but we talked about them at length and like all versions they have their problems.
She also said.... As it is hard to diagnose... I may have had chron's all along.  There is a test for that but it involves swallowing a pill and recovery of it.  I have a constricted inflamed area and it may get stuck there and require surgery to remove it if it does.
She is.... If and when I go in for removal... Look at the inflamed constricted area and if she feels that is the problem she will remove that and leave my pouch alone.
That... Would be the only hope I have once I go in..... She also said I most likely have irritable bowel syndrome.  I do believe that. 
I appreciate any input and will uestion the surgeon on all that are applicable in my situation.
As I said.... I would like to keep it.  But I am also willing to wear an appliance also if it will put an end to this.
I read some people here trying to keep their pouch at all costs going through a heck of alot more than I am with infections... And such.  I just don't know how they can endure such pain mentally and physically for longer than I have.  I am not sure I want to spend another year like this.
I have a full time job but feel I can't do anything outside of work.  And I stay at work my whole shift good and really bad days.  I know I have at least another 10 years in the workforce and with this weight loss I don't have the stamina now to get through n eight hours shift.  I force myself to stay on bad days when I know any normal person would leave early.  I'm not normal.
Or I am... Just want a full paycheck.

Richard, I am sorry to hear that you're struggling. One thing that really helped me was trying Shakeology protein shakes. I went from getting up 3 to 4 times per night, never feeling rested, to getting up 0-1 times per night. I have been having a shake at lunch with a banana or peanut butter to help thicken things and provide extra calories. This has really made a huge difference in my nighttime bathroom habits.

I feel your pain mystic.  I'm around 2.5 years, I'm on my 2nd j pouch because the 1st one was so screwed up, in the beginning this one was great, but slowly went downhill and can't get a handle on it now. I'm still trying though. Really want to find something that works. I like you have issues with getting sleep lately and it does get to u. It throws off my day and messes with my head and working in ITfield I need my head right

This might sound icky, but when I had trouble emptying, this works for me.

I get my sitz bath, fill it with pretty warm to almost hot water. Plop my butt in it... And the warmth just relaxes everything. I can then pass everything into the water. Yeah, I then have to clean it up, but I feel so much better after, I don't care.

Worth a shot.

You know.  We all do weird stuff.  But none of it is weird to us.  What works works. 
I have had it to where I couldn't make it and was down scrubbing the tub five minutes later. 
So if it works for you there is nothing wrong with that.
Now I bet there ar more stories out there but some won't admit to it. 
I would.... And  have nothing to hide and over my long stay in the hospital pretty well lost my dignity there. 
But only there and at home.  I will do anything at times to get it out. 
Standing on my head is not out of the question yet... Lol.
Richard.

I too have had problems emptying... I can come close if my last meal is at 2pm! That's crazy! And they say not good either as you should eat small and often and keep the pouch working. Doesn't feel good when it's completely empty either! I think I'm learning that just becuase others in here can empty, that may not be me. My dr did say my pouch ended up on the large side so maybe emptying before sleep is just not In the cards for me. I am

 finding that I cant tolerate fiber to help bulk things and go less often, the bloating and gassy are worse than going  to the bathroom! I'm eating a bagel and cream cheese in the mornings to keep me full and bathroom free for a few good hours as I've tried to go back to working a part time job. Small snacks then of applesauce and yogurt or some chicken and cheese and pretzels. I also had burning an itching problems eating too much protein- tried a bit ago to cut out sugar since that's what everyone has to say about the burning and itching. Well guess what!? Look up what happens with digestion when you eat too  much protein-BURNING! I'm trying to fins some balance now but I am semi low residual and added foods. Not great for the sugar I take but I'm a work in progress. I have started pelvic floor therapy and you may want to look into that. Got referral from My doc and have been doing that for a few weeks now. I am loving it and looking forward to going to those appointments twice a week, very insightful. Things that I hadn't thought of for sure! Anyway, you aren't alone! Finally got a decent night sleep last night! 

Questran will help a lot with the burn. 
I have been taking it everyday for about two weeks.
It doesn't eliminate it all but for me pretty close.
But... It does give me quite a few watery bm's.
I don't know if that is supposed to work that way or not.  But even though I have more it's not burning.  So I am ok with that.
Does anyone here use questran?
Just wondering if you have any problems with it.
I think I have a kink somewhere.  I will have pain and an urge to go and then I can feel the release of pressure and actually hear the gurgling and it will go away.  But this goes on all day.  I don't want to stop using it because BB was a big issue and it's nice not to have to it.

I'm sorry to hear you are having problems.  I don't know how underweight you are, but have you discussed TPN (Total Parenteral Nutrition) with your doctor?  My son  got TPN through a PICC line for a month last year, and it helped him gain weight.  This was right before his colectomy and ileostomy (15 yrs old at the time).
My son is also very underweight right now (5'9" and 111 lb) and just can't seem to gain. (Got his J pouch end of June.)  The nutritionist last week told us he needs more calories to gain weight... really helpful...

 

I was 176 before surgery.  Which was normal.
I was up to 150 a few months back.
I am down to 139 now.
I just don't think I can hold out much longer.
It truly is getting the best of me.
For the past three days I have had bad pains and feels like a partial blockage.  I don't want to but I think it would be best for me to just have it taken out and quit fighting to keep it. 
My surgeon will not operate without the ok that if she finds nothing wrong to fix.... Such as a kink or an inflamed tight spot.... Which she saw on a CT scan.... that she can take it out and put an illeo on me.  She may find something may not.  I have had all the tests. 
I am just physically exhausted. 
Going through this and putting in eight hours a day.
I am worn out.  I am posting from work right now.
Thanks All for your concern.
I do appreciate all the ideas.

A person with a J pouch will always have diarrhea right?  my stools are most often always watery is that normal?

A person with a J-pouch will usually have soft stools, and that's entirely normal. Truly watery stools are less desirable, though I suspect all of us get them now and then. Watery stools can be thickened up mechanically, with soluble fiber (Metamucil/psyllium, Citrucel, Benefiber). Some people get gassy from psyllium and are better off with one of the others. Psyllium is what works best for me.

 

If the watery stools are caused by pouchitis, or C. diff, or some other infection, then it needs to get properly treated.

 

I'd suggest reserving the word "diarrhea" for times when there's urgency. Diarrhea of that sort is not normal for J-pouchers.

I find they are thick enough on their own and if I thicken them up I get painful monkey butt... Lol.
I prefer them watery because it comes right out.
I have had serious partial blockages over the past week.  It finally broke last night.  I was at my limit.  As I spoke at work last night.  But now that it has broke through I finally slept and feel much better.
Now. 
Question for you Scott.
I had pluersy the whole time this was going on.  I let it run its course without antibiotics.   Have had pluersy so many times I cannot count so I know when I get it.
Does it affect the lining that far down?  I'm  know this is a dumb question and out of the blue but as the pluersy has faded so has my pouch problems and now that the pluersy is pretty well gone so are my pouch problems.
Are they related?

I've never heard of a link between pleurisy and pouch issues, but most people don't ever get pleurisy. If yours are connected, yours are connected! Certainly autoimmune diseases can cause pleurisy, and some of us seem to get inflamed all over sometimes.

 

Is it possible you're getting frequent partial obstructions of your small bowel? They'd be from adhesions, most likely. If so, they have nothing to do with your pouch, but they can sure make you miserable.

I think I have had a partial for awhile now. 
I will get an intense pain and feel like I have to go.
But I hold it.
As I am holding it I can hear a gurgling... If it's quiet... Otherwise I feel the gurgling and the pressure and pain subside.  It does this about four time every half hour.
Serious!
It has been do I get this for close to a week.
Only thing I can think is I have a kink... Adhesion... Or a partial blockage.
I had a large amount come out over night last night and it has calmed a bit.  Before that it was a continuous pain.
And gurgling.  I just don't know.  I just don't know.

I get these symptoms with pouchitis. I get the waves of gurgling and very loud noises in my pouch with cramping until I empty it it and also struggle with repeat trips, not fully emptying, straining, repeat trips and lack of sleep at night. I have not slept through the night since having my surgery and I envy those who can. I have just developed a very high tolerance to all this stuff as I do not want an ostomy, but I know I could never, ever hold down a job like this. I have found at night a warm water enema really does help empty me out and provide me with at least 4 hours of uninterrupted sleep. I reserve this measure for when I am desperate though.

I got more sleep when I had the bag than after. What pleasant memories........