If you’ve just had J-pouch surgery and you’re waking up four, five, maybe six times a night, you’re not doing anything wrong.
It’s really common and really normal for people in the early days to experience those high numbers at night and not have a good night’s sleep. But the good news is, it’s not always going to be like that. Things can change, and things can improve.
I’ve had my J-pouch for around 16 years now, and I’m going to share three things which helped me get my nighttime numbers right down. At 16 years, I now either have one or no trips in the night.
When your pouch is new, it lacks compliance. It doesn’t do what you need it to do. It hasn’t learned to stretch, and it hasn’t learned to hold. It’s highly likely that your transit time is pretty fast, so things are going through your system pretty quickly.
At this point, your pouch is like a small balloon. It’s small, it can’t hold much, and it needs training.
That training involves learning to resist the urge to empty your pouch as soon as you sense it’s filling up. You need to deliberately increase the amount of time, in increments, that you can hold your pouch before you go to the toilet. This helps stretch the tissue in the pouch and teaches your pouch how it should behave as a new organ in your body.
I’ve done a full video on training my pouch, which you can see HERE
1. Think about when you eat your last meal of the day
Firstly, think about when you eat your last meal of the day.
Try and aim for a good four to five hour window between eating your last meal and when you go to bed. This allows your system to push through the bulk of that waste while you’re still awake and before your head hits the pillow.
That one change alone can make a real difference.
2. Try introducing thickening agents
Secondly, if you can, try and introduce some thickening agents.
If you can thicken your output, then that really does become a game changer.
I use both Metamucil powder drinks and the wafers as my thickening agent, and it’s made a huge difference. In fact, I’d go as far as to say that this has been the single biggest tip I could recommend to somebody who is struggling with their J-pouch at the moment.
*the links in this article are affiliate links and I may earn a small commission if you use them*
The Metamucil absorbs fluid from within your system, so it can absorb that fluid and help thicken things, which in turn helps slow things down.
In those early days, a wafer right before bed could really help bind up the fluid in your system, slow things down, and buy you a window so that you can get some really good sleep. I quite clearly remember the day that I tried that myself and was amazed at the difference it made for me.
A quick extra tip about your evening meal
When you have your evening meal, try and avoid foods that have extra sugar, maybe extra caffeine or alcohol, or things that are quite hard going — roughage, or foods that are harder to digest — as your last meal of the day.
Try and aim for plain, low-residue, soluble-fibre foods, because that will also help with slowing transit time and thickening things up before bed.
3. Go to the toilet right before bed — and then wait 20 minutes
Thirdly, let’s talk about going to the toilet right before bed.
Now obviously, you want to empty your J-pouch before you go to bed, but my tip would be: wait about 20 minutes and see if you need to go again, if there’s anything more to come out.
Quite often, after you empty your J-pouch, there’s still food in your system that’s working its way through. So to do that second empty around 20 minutes later could make a big improvement.
It’s really easy when you’re tired and comfortable and in bed, if you start to think that you might need to go, to decide it’s too much effort and just stay in a comfy, warm bed.
My advice: get up and go.
It’s far easier to get up and go to the toilet than it is to have to worry about clearing up a mess when you’ve had a leak at 3 o’clock in the morning.
If you wake up in the middle of the night and again you’re not sure whether or not you need to get up and go, make the effort, even if it’s in the middle of the night, to get up and go again. It’s far easier than having to deal with the practicalities of clearing up a mess from a leak, but also taking that mental hit of knowing that you’ve had a leak.
If you do have an accident, please don’t beat yourself up
And if you do have an accident, please don’t worry. Do not beat yourself up about it. If it happens a lot colder using bed protection sheets to help.
The best advice I can give you is: have a shower, get things cleaned up, get yourself sorted, and then forget about it straight away.
I know it can be really difficult to face these kinds of challenges when you’re an adult, but really, forget about it and move on. Your body’s gone through a huge change, and it’s really not your fault. It’s beyond your control at this point.
So please don’t beat yourself up.
Something else that may help
If you are struggling, then trying something like loperamide — which is the generic name for Imodium — might really help.
It can slow your whole digestive tract down, making it a much longer journey and buying you time to have a good night’s sleep.
If you think that’s something you might need to try or might want to try, then do speak to your healthcare professional team about whether or not that’s suitable for you.
The early days can feel very lonely
In the early days, I do remember sitting up in the bathroom at 1 o’clock in the morning, 2 o’clock in the morning, 3 o’clock in the morning.
I felt tired, I was up alone, and I actually felt like I was the only person awake in the world at that time, because my nighttime frequency was so high.
That’s when doubt — and possible regret — those kinds of thoughts started to pop into my head.
Had I made a mistake having this surgery? Would things ever get better?
So if that’s you right now, if you’re in that stage, then just know that things can get better.
By six months, the capacity of your pouch has increased. And then by six months again — a year later — it’s likely that the capacity of your pouch has increased again.
The early stage, straight after takedown, is one of the hardest stages of the whole journey.
Things can get better. Your body can adapt. It can learn, and it can change. It can take time, but over that time it can make a big difference, and things can improve a lot.
Want more support on the J-pouch journey?
You can also explore more recovery tips, lived-experience advice, and practical encouragement here on Pouch Heals. You can subscribe to the channel HERE If you’d like a deeper guide, my Books shares many more lessons from life before and after surgery.
If you prefer to watch the video version of this blog post you can do so below: