Calmo
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L
Hey guys

Firstly - new poster here, I've just found this forum and it seems to be quite a large community which is great. Also, I apologise if this is something that has been posted before.

Basically, I'm 4 months post takedown and I'm really, really struggling to get a good nights sleep. To the point that it's effecting me quite alot through the day and I feel awful when I wake up in the morning (everyday).

As a whole my experience with a j pouch has been okay so far, not too many problems and I had a scope a few weeks back that showed a healthy j-pouch. I've had the odd bit off blood (reason for the scope) and some nights I go a lot more than I'd like too but as a whole I manage it quite well. The amount I need to go through the day and night varies quite alot but I'd say it's usually around 6/per day and 1-3/per night.

My problem is that I seem to just go through the night as I'm always waking up, so I just go to the toilet to prevent delaying the inevitable. I don't think I'd need to go but I do as I'm awake up anyway. Now I seem to just snooze for the whole night and get up for the toilet when I wake up, I never really feel like I've fallen into a deep sleep. I just seem to be in a really bad sleep pattern that I can't seem to break. My sleep has been bad for 3+ years now with a combination of bad colitis and now living with a j pouch.

I eat early every evening. Take loperimide/imodium as I should. Tried histamine sleep tablets for a few nights to help me sleep, with no luck. Sleep tea... etc.

Any advice from a similar experience would be great. I'm starting my final year of university and think I'm really in need of getting on top of my sleep Confused

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P PluotMember
You might want to try something stronger than an antihistamine tablet to help you sleep, like Ambien or at least melatonin.

After a year with my pouch, I can sleep through the night most of the time, but I'm a lifelong insomniac and I tend to wake up in the middle of the night no matter what. I find that if I go right back to sleep, instead of going to the bathroom because "I might as well since I'm up," I feel better rested in the morning.

The other thing I did earlier on when I really did need to go to the bathroom during the night was just sleep longer. Instead of waking up ~8 hours after going to bed, I would wake up 9 or 10 hours later (or, more precisely, I went to bed an hour or two earlier in the evening). You're also still healing from sickness and surgery, you can use the extra rest.
P
CTBarristerCTBarristerMember
I am also an insomniac. I am taking Ambien right now. It has always helped when I get what seems like a once a year bout with really severe insomnia. Note that Ambien comes in regular and extended release format. If you have a J Pouch the extended release format is not recommended as it likely will still be releasing when you excrete it. It is designed for coloned persons and a longer trip down the hatch and to the toilet.

When I am not taking Ambien for the rare severe insomnia, I will take over the counter benadryl and melatonin for the routine insomnia. They help for regular/casual insomnia but I need prescription strength to combat the really severe whacked out insomnia which like I said happens once a year or so when my sleep cycle goes way off.

Increased exercise and physical activity could also help. When I was in university/law school I drank too much coffee, had long periods of inactivity at the library doing research, and stressed over exams and publication of my papers. As a college student, it is not hard to fall into an unhealthy daily routine, and you may need to make changes in yours. Since you live in the UK, maybe you can buy a soccer ball and do your best Wayne Rooney imitation.
CTBarrister
Last edited by CTBarrister
LambiepieLambiepieMember
Lflower, what helped me right after takedown (and still occasionally) was to sleep in a recliner. I found that, whenever I'd get into bed and lay on my back or turn on my right side, I'd feel the need to expel gas and everything that comes along with it. The recliner was comfortable and I could avoid those two positions. If you have one, it's worth trying. Just lay a small pillow behind your head. Even now if I NEED to get rid of gas, I lay on my right side. I can't explain it anatomically but it works like a charm and after four years, I can do it without pooping! Good luck to you.
Lambiepie
L Lflower1991Member
Thank you for all of your replies, much appreciated. I am keen to try non drug methods for the time being though.

I actually tried eating some bread w/peanut butter 2 nights ago right before bed and I was only up once. Best nights sleep for a while! However last night I was up 4-5 times with uncontrollable itching and numerous toilet trips. Grrr

I will look into Lomitil, I haven't actually heard of it before now
L
CTBarristerCTBarristerMember
quote:
Maybe Darren Fletcher though, if you've heard of him (he also plays for Manchester United and has a J-pouch)


Actually I didn't know that and thanks for that info. The extent of my soccer viewing activities consists of going to high school games to watch my friend's son, who plays for the private Catholic high school we both graduated from. The kid is the starting right midfielder and in his last game was kicked in the face during a scrum and needed stitches in his lip. He was benched the prior game for a bonehead play when he inadvertantly erred kicking the ball back to the goalie. It went over the goalie's head resulting in a corner kick for the other team. Coach benched him immediately for the rest of the game. The kid and the team are off to a terrible start, but I go to the games because I like the kid, and want to lend my support to him.

The Darren Fletcher imitation could help your sleep - insert name of whatever player you like, but this activity could help.
CTBarrister
A ArnaudMember
Here's a non-drug idea : use a catheter to empty well your pouch before going to bed. It works well for me, I usually wake up only once a night since I started doing it, whereas it used to be 3-5 times before that.
It's actually been pioneered by your compatriots in St-Mark's hospital :-)
See my post in Fosty's thread "Irrigatube tube .. anyone ?" with the web links for more details.
Hope it works, good luck !
A
SpookySpookyMember
I would agree with having a small, but a bulking or higher fat snack before bed, such as peanut butter, a piece of toast, or cheese and crackers. Sometimes an empty stomach can cause the opposite effect, and what happens is that your gut churns on itself, creating excess gas and a more watery output and hence higher frequency. You may also want to play with your imodium dosing schedule. My surgeon has said we can take 6-8 tablets per day. You may want to take 2 with dinner and then 2 before bed.

Also, with respect to lomotil, that in itself can have a dual effect because it can also be somewhat sedating. I haven't taken it in years, but when I did it made me pretty drowsy (one of the reasons I quit taking it).
Spooky
G gelaMember
I don't sleep, even on Ambien. Lately I have resorted to using essential oils. I use a couple of drops of Lavender behind my ears and sometimes some mint on my chest. The smell is relaxing and has helped me sleep better than anything lately and there aren't any side effects at all. Both are safe to put on without a carrier (mixed with lotion etc). I order mine off of Amazon from Eden Oils.
G
MysticobraMysticobraMember
Time.
My experience was it took a long time to get back to a normal sleep. About six.... Seven months and finally getting enough sleep. I remember the first night I slept through the whole night and I felt worse than just getting four or five hours. It just took time for me. I still get up to use the bathroom but fall right back asleep.
The quality of sleep is better.
But I do remember that it was driving me crazy at first but I was maybe fortunate that I did not have to go to work.
Good luck to you and I do hope sleep comes to you soon. It will.
Richard.
Mysticobra
JillyJillyMember
And...please don't dismiss the effects of sleep deprivation! I had awful nighttime anxiety for several years. I was afraid of pooping on myself. I'd tell people that I pooped 2-3 times per night, whether I got up or not!

Anyway, my point is that I somewhat disregarded the depression, memory loss, irritability, and more. It took me a long long time to realize that I wasn't loony; I just needed sleep.

Good luck!
Jilly
ktaktaMember
My sleep slowly got worse and worse over a ten year period. Part of it is what you say, wake up and decide to get up and go since I'm awake. I now take Ambien and sleep well. I was worried I wouldn't wake up when I really had to go, but that doesn't seem to be a problem.

I did use melatonin and hops for a while, but it eventually quit working.
kta
BM boy's momMember
Everyone is different - but pickled ginger before bed has been helping my son sleep longer. We found that foods with seratonin (banana, avocado, ) sometimes seem to stimulate his need to go -- and that ginger which blocks seratonin can help him get a longer sleep. Also sometimes he has toast ( a specific brand, called "Bread Alone - french sour dough that is very fresh, only has 4 ingredients and no yeast -)with some grass fed butter before bed. If you try bread -- look for a healthy, fresh brand - often sour dough - as I think less chance that will contribute to SIBO.
BM
MS Mum SusanMember

Arnaud:

Arnaud posted:
Here's a non-drug idea : use a catheter to empty well your pouch before going to bed. It works well for me, I usually wake up only once a night since I started doing it, whereas it used to be 3-5 times before that.
It's actually been pioneered by your compatriots in St-Mark's hospital :-)
See my post in Fosty's thread "Irrigatube tube .. anyone ?" with the web links for more details.
Hope it works, good luck !
 
 

Just contacting you on behalf of my son who is struggling to get a good night's sleep. He has a j pouch and was interested in your (above) post about emptying your pouch with a catheter. I realise it's a long time since you posted but he was wondering how successful this has been for you.

His thoughts are to contact St Mark's hospital in the near future to enquire about the procedure. He really does need to get some sleep without constant trips to the bathroom!

 
MS
skn69skn69Member

I loath the drug route and rarely suggest it to anyone for a lot of reasons. Firstly, some sleep meds can be habit forming and not necessarily addictive but your body convinces your brain that you cannot sleep without it and you become dependant, next, some can put you into such a deep snooze that you do not wake up in time to empty your pouch and end up sleeping in a mess.

But, my favourite, non-addictive sleep aide that really does the trick and helps to prevent leakage is to take a Gravol, Dramamine or any other 'Motion Sickness' medication...it slows down peristalsis so  you gut is calmer for the night and it knocks you right out.

I also like exercise as a sleep remedy...whenever I am very active (like right now...2-3hrs exercise in the pool daily) I  sleep like a baby...

Sharon

skn69

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