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I have had this issue for several months and I can't decide if I should attach the blame to my bladder or pouch. My sleep has been so interrupted.

Every night , like clock work @about 2 a.m. my body wakes me up. There's  a nagging (not hard) pressure in my lower abdemon in the vicinity of my bladder.

I empty my bladder, but that does not relieve the pressure. I empty the pouch and the pressure is gone. I've been able to wait until 7:30 to empty again, but like this morning we had round 2 at 5:30 a.m.

I have no problems during the day so I think  positional have everything to do with it. Other than that, not sure in which direction to go to resolve this.

Any thoughts?

Leslie

 

 

 

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 have you changed  the time of your last meal of the day and/or when you go to bed?   what is the length of time between the last meal and turning out the light?

You might be waking up at two because you are subconsciously thinking that you will wake up at that time.  Regardless, I too would be concerned. So sorry I can’t help out with any information. Janet

I agree that if it were pouchitis it will present itself 24/7 and not just at night. Considering you haven’t changed routines it sounds like a good idea to check this out with a urologist. Certainly is an easier appointment to snag than with k pouch doc. I’m interested in your resolution – – for selfish reasons – – as it very occasionally happens with me. I assume my problem is eating  too late and too much in the evening.  Good luck. Janet

I too get so annoyed by night time pouch nonsense. All I want is 8 solid hours of sleep. But every night/early morning my stomach starts grumbling. I try to ignore it. I look at the clock and weigh the pros/cons of waking up to empty my pouch versus struggling to sleep through it. Either way my sleep is disturbed and I’m exhausted the next day. I kinda know part of the issue is that I eat late. I always empty my pouch right before I go to bed but then I immediately get hungry - so I have to eat. So I too would like to hear any suggestions for getting decent sleep. 

Shavon posted:

I too get so annoyed by night time pouch nonsense. All I want is 8 solid hours of sleep. But every night/early morning my stomach starts grumbling. I try to ignore it. I look at the clock and weigh the pros/cons of waking up to empty my pouch versus struggling to sleep through it. Either way my sleep is disturbed and I’m exhausted the next day. I kinda know part of the issue is that I eat late. I always empty my pouch right before I go to bed but then I immediately get hungry - so I have to eat. So I too would like to hear any suggestions for getting decent sleep. 

Yes I have tried everything but I am always disturb after 4 hours sleep due to painful pressure so am forced to empty my pouch. Then the problem of attempting to get back to sleep.

It happens to me (at the moment)...but not usually.

It becomes a pattern and your brain/body connection just continues doing it. You need to 'break' the pattern. It is the only way to get back to normal sleep.

Firstly, you need to give yourself a liquid dinner that can be emptied out within 3hrs (or before bed) to be sure that your pouch/bladder are really empty...you might need to push forward your sleep time to do so. 

Then, when it wakes you up at 2am, refuse to leave the bed or listen to it. It is lying to you. You do not need to go. You might need to do this a couple nights in a row to be able to get back to your original schedule but it will happen eventually. 

Mine does it after vacations where I have gone off of both diet and schedule or after some massive wedding where I ate everything in sight and ate very late. 

Good luck

Sharon

Thanks Sharon. 

Am I the only one who gets really hungry right after emptying?  I’ll try liquids as a snack before bed.

I try ignoring the urge to empty but either the cramping hurts so badly that I’m not sleeping anyway so I need to empty to stop the pain. Or it’s so full in the morning that I struggle to get the catheter in - causing more pain.

The only solution I’ve found is drugs - muscle relaxers, OTC sleep aids, etc., whatever to help me sleep through the urge. However it leaves me groggy in the morning and I know I can’t do that forever. 

For those of you who struggle with this nighttime nonsense, how are you maintaining employment and getting to work on time and not crashing from exhaustion every day?  I currently have ADA accommodations and a very understanding supervisor but that won’t last forever. I’m not sure how to work without getting solid sleep. 

Yes I fully understand.  it is this constant disrupted sleep problem.

There is no way I can ignore this pain.  Also remember  adhesions from surgery can play a part.   Sometimes I feel as if I have eaten Lego.

With sleep you can face the world and each day. Lucky those that sleep.

I do use immodium if things are bad. I am so good with my diet and try to only eat healthy food. Making doctors understand this has been impossible for me.

It seems our insides never rest even if our bodies are relaxed.

I  have now cut out all dairy.  This has most certainly cleared my head etc.

I know my body still has ulcerative colitis problems regarding food despite my surgery.

Understand how you feel if this helps. 

 

 

 

I haven't had to empty the last few nights. Two things are different: 1: I started taking probiotics again. 2: I'm not a big eater, especially at dinner. But, my dinner got even even lighter. Small spinach salad with chicken or cup of soup and quinoa salad are examples. I am treating myself to some lowfat frozen yogurt. I'm watching what I eat because my reflux has been so bad so serves two purposes.

It is good to know that becoming hungry after emptying the pouch isn't some weird thing. It happens. 

  • Anyway, I made an appointment with my GI . If she has other helpful hints I will pass them on.

So, I had my GI visit. We agreed it's not pouchitis. She really had no good explanation for this issue. Her suggestion was to make lunch the big meal, eat dinner earlier and make it light. This is what I try to do anyway. She did give me medication to take before bed that hopefully would help me sleep through the nonsense. It only helps me fall back to sleep quickly after being up.

My suggestion for those of you who eat after you empty at night because you are now hungry (and I get it), really try hard not to...it could make some difference.

@skn69 posted:

It happens to me (at the moment)...but not usually.

It becomes a pattern and your brain/body connection just continues doing it. You need to 'break' the pattern. It is the only way to get back to normal sleep.

Firstly, you need to give yourself a liquid dinner that can be emptied out within 3hrs (or before bed) to be sure that your pouch/bladder are really empty...you might need to push forward your sleep time to do so.

Then, when it wakes you up at 2am, refuse to leave the bed or listen to it. It is lying to you. You do not need to go. You might need to do this a couple nights in a row to be able to get back to your original schedule but it will happen eventually.

Mine does it after vacations where I have gone off of both diet and schedule or after some massive wedding where I ate everything in sight and ate very late.

Good luck

Sharon

Hi Sharon

What would you recommend for "liquid dinner" ?

Thanks

Mina

I like proteins...you can try just eating a chicken breast and having a protein shake or something like (if you can eat it) Greek yogurt.

I like homemade, blended vegetable soups too...I make them with bones sometimes for the extra vitamins and flavor...that with a piece of chicken in it or a fish soup (my favorite food in the world)...it is just every leftover piece of fish that the fishmonger has (bones, heads) that are cooked together and strained...then I add a paprika/tomato base and simmer with spices...it is rich, hearty (you can add chunks of fish and fresh herbs)...it makes for a satisfying, pouch-friendly, bladder-friendly meal that goes in-and-out before bedtime...I sleep like a baby after that!

Make whatever makes you, your mouth and tummy happy but reset your stomach-clock.

It takes me a couple of nights but then I am fine.

Sharon

I must admit that unless I suspect something serious (or I have real proof), I tend to not run to the nearest doctor. Not that I cannot afford to...I live in a country with social health insurance and I have 100% coverage.

That said, as the years go by, appointments are harder to get and it takes longer to find a specialist.

Years of not having a doctor or surgeon who knew what a K pouch was or what my plumbing looked like made me very self-reliant so I tend to go for all of the 'easy' or 'simple' solutions first before wasting my time sitting in a waiting room.

Doesn't meant that you shouldn't consult...Far from it. But if you have 0 symptoms in the daytime then it is probably not a UTI or Pouchitis but more sleep-cycle-related or the time that you eat or drink and what goes in...but that is my opinion and not fact...

Just saying

Sharon

@skn69 posted:

I must admit that unless I suspect something serious (or I have real proof), I tend to not run to the nearest doctor. Not that I cannot afford to...I live in a country with social health insurance and I have 100% coverage.

That said, as the years go by, appointments are harder to get and it takes longer to find a specialist.

Years of not having a doctor or surgeon who knew what a K pouch was or what my plumbing looked like made me very self-reliant so I tend to go for all of the 'easy' or 'simple' solutions first before wasting my time sitting in a waiting room.

Doesn't meant that you shouldn't consult...Far from it. But if you have 0 symptoms in the daytime then it is probably not a UTI or Pouchitis but more sleep-cycle-related or the time that you eat or drink and what goes in...but that is my opinion and not fact...

Just saying

Sharon

I understand your point but running to the nearest doctor helps prevent the worse from happening.

@skn69 posted:

I like proteins...you can try just eating a chicken breast and having a protein shake or something like (if you can eat it) Greek yogurt.

I like homemade, blended vegetable soups too...I make them with bones sometimes for the extra vitamins and flavor...that with a piece of chicken in it or a fish soup (my favorite food in the world)...it is just every leftover piece of fish that the fishmonger has (bones, heads) that are cooked together and strained...then I add a paprika/tomato base and simmer with spices...it is rich, hearty (you can add chunks of fish and fresh herbs)...it makes for a satisfying, pouch-friendly, bladder-friendly meal that goes in-and-out before bedtime...I sleep like a baby after that!

Make whatever makes you, your mouth and tummy happy but reset your stomach-clock.

It takes me a couple of nights but then I am fine.

Sharon

thank you Sharon! So your method is to have something that goes out quickly. Sounds good.

So thinking out loud now (or in writing)  I would say I am wondering if that will make me feel hungry by bed time (3 - 4 hrs after dinner) and make me eat again before going to bed. I recall your post on trying to ignore our brain/habits and not get up to eat during sleep which relates to this as well. (I dont seem to tolerate being hungry very well. I get a stomach cramp and headache when being hungry for long. I think I had this sensitivity even before I got diagnosed with UC which is 14 years ago). But anyway.

So what I have been thinking about and started it in the last few days is to have a meal that will keep me full but not give me gases which would wake me up and I think plain meat, tuna or hard eggs are good candidates for these as they are not carbs. I started trying hard eggs and be consistent with short frequent meals so that dinner is not heavy. Shall see how it goes. Do you have any advise on this?

thanks

Mina

Sounds like a plan Mina,

We are all different and all have different turn-around times for our digestive processes... I transit fruit in the morning in under 1/2hr...proteins like yogurt or chicken breast (not fried) in under 3hrs...(the time it takes to finish my afternoon classes so that my pouch is empty when I take the subway home)...carbs are too tricky for me because I tend to eat them with cheese and that multiplies (+/-) the digestive times.

When I had my pouch done in 1979 I was told to eat before 5pm (impossible for me) so that my pouch would be empty during the night...like you, I found that I was starving all evening long (and my lifestyle does not allow me to dine at 5pm...Closer to 8 or 9pm).

I was miserable (but very skinny).

I later learned that if I had a meal earlier and a late-night snack an hour before bed, I could sleep through the night without any problem...

Split your meal...eat the heavier part early (carbs) and the protein part later or a nice thick soup...

With Covid, confinement, curfew and everything else going on I either have classes so early that it is ridiculous (up at 5am) or I teach from home and that means I can get up at 7 or 8 am...my system is often thrown out of wack..

Sort of like digestive jet-lag...so I reboot dinner times and either eat earlier or later according to my schedule...you will find your 'bliss' one way or the other...just beware...if you are having uncomfortable symptoms, bloating, cramping, pain, dizziness, headaches or anything out of the normal then track it, write it down and if it persists, call your doctor...things like getting up to pee at night can be a sign of high blood sugar. Cramps can be a sign of potassium loss...

Just saying that sometimes it is nothing and sometimes it is not.

Sharon

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