Try a product called anesthehetized for sleep

It sounds like two key issues here may be anxiety-related: getting up to use the toilet even though it isn’t necessary, and struggling to get back to sleep. Strategies that focus on that anxiety might be particularly beneficial. It sounds like your J-pouch is doing just fine but you haven’t caught up to it yet.

FWIW, there’s some evidence that melatonin may work best at surprisingly low doses - 1 mg or even less.

@Scott F posted:

It sounds like two key issues here may be anxiety-related: getting up to use the toilet even though it isn’t necessary, and struggling to get back to sleep. Strategies that focus on that anxiety might be particularly beneficial. It sounds like your J-pouch is doing just fine but you haven’t caught up to it yet.

FWIW, there’s some evidence that melatonin may work best at surprisingly low doses - 1 mg or even less.

I didn’t know about the low dose, thanks. Unfortunately it’s what I’ve been taking pills of 1mg… maybe I can try with less…

It’s true I haven’t really caught up with my jpouch, I still need to give myself time to learn and understand how it works but ever since university started I wasn’t able to. I am seriously so discouraged and mad atm, as if it’s a cycle… the level of stress and exhaustion I have rn is absurd, it’s like my body refuses to let go at this point. Be it the initial fear of soiling the bed, of not controlling anything… I’d even trade my insomnia for it atm lol

I am sorry for your lack of sleep! Ironically, I was about to post a survey to ask if anyone with a J-Pouch sleeps through the night. For me, it has happened probably 5 times in the last 11 years of having a J-pouch.  (I am sorry to tell you this!!!) Usually I am up at least once with loose stool, and it can be challenging to get back to sleep once you make sure the toilet isn't a mess, you take care of the odor, and wash your hands. My guess is that most of us (90% or more?) do not successfully sleep through the night, but I would love to hear about this. If your pouch is not keeping you up, then I would try all of the traditional methods for a good night's sleep, like deep, slow breathing, melatonin (I know you tried this without success). I would avoid chronic use of sleep aids that have antihistamines because I have heard for the elderly at least, they are not good for the brain.  My GI doctor has me taking 2 imodium around 9:30 pm to see if it will help. It did at first, but it is not a reliable answer to sleeping through the night. When my pouch is gurgly and keeps me awake, I do an abdominal massage and maybe even use a heating pad to calm things down. Sometimes gas is what wakes me up. I release that and can go back to sleep. J-pouch wise, I have heard of people trying to thicken the stool before bedtime by taking psylium husks (like metamucil) to see if it helps slow things down. You are in the early stages with your pouch and you and your pouch will need to just calm down a bit post surgery and get into a groove that will let you sleep better.  Did you sleep well before the J-pouch? I have never been a heavy sleeper, so now the J-pouch is another thing that may wake me up!

@RHolt posted:

I am sorry for your lack of sleep! Ironically, I was about to post a survey to ask if anyone with a J-Pouch sleeps through the night. For me, it has happened probably 5 times in the last 11 years of having a J-pouch.  (I am sorry to tell you this!!!) Usually I am up at least once with loose stool, and it can be challenging to get back to sleep once you make sure the toilet isn't a mess, you take care of the odor, and wash your hands. My guess is that most of us (90% or more?) do not successfully sleep through the night, but I would love to hear about this. If your pouch is not keeping you up, then I would try all of the traditional methods for a good night's sleep, like deep, slow breathing, melatonin (I know you tried this without success). I would avoid chronic use of sleep aids that have antihistamines because I have heard for the elderly at least, they are not good for the brain.  My GI doctor has me taking 2 imodium around 9:30 pm to see if it will help. It did at first, but it is not a reliable answer to sleeping through the night. When my pouch is gurgly and keeps me awake, I do an abdominal massage and maybe even use a heating pad to calm things down. Sometimes gas is what wakes me up. I release that and can go back to sleep. J-pouch wise, I have heard of people trying to thicken the stool before bedtime by taking psylium husks (like metamucil) to see if it helps slow things down. You are in the early stages with your pouch and you and your pouch will need to just calm down a bit post surgery and get into a groove that will let you sleep better.  Did you sleep well before the J-pouch? I have never been a heavy sleeper, so now the J-pouch is another thing that may wake me up!

Thanks for your advice, really. Maybe I wasn’t clear enough tho, I struggle to even START to sleep.
After surgery, I had the first three or two weeks of this out of fear (so I basically didn’t even sleep, so no night awakenings as I wasn’t even sleeping). Then it passed as I got calmer, I was also given 2 Imodium but I took it for 3 days since it was all about anxiety. I had found a sort of balance, with one night BM and a restful sleep even after that. Woken up by urge and then went back to sleep without even going to the bathroom. It was working, I don’t understand why it’s like this rn. I let go of night pads and all because of how safe I felt.

So right now: I do not fall asleep + when I do - only thanks to meds - the 3 hours I get are interrupted + no rest because of my daily activities

I do not even pretend a full night sleep, just actually falling asleep and then going back to sleep IF I have a BM would be fine seriously.

As for jpouchers… I know some have no problems sleeping, others have soiling, others have bad sleep. A poll is a good idea imho

Try marijuana gummies, they help with anxiety and sleep.

You might try gabapentin, which calms mind "chatter" and will most likely make you sleepy. I take it nightly for migraine prevention and allowing me to get quality rest, as migraines messed with my sleep. Within an hour I'm falling asleep. I wouldn't advise taking it during the day while at work if you expect to function well or when driving because of the sleepiness it causes. -Rose-

@Pals posted:

Try a product called anesthehetized for sleep

I googled it but can't find that product.  Interested, though!

To the sleep deprived person, if you took benzos for very long, you might be withdrawing from them.  They take a really long time to get out of a person's system.  I use something called "Solid Eight" (Herbalogic) and sometimes the anti-anxiety version of Delta-8 CBD.  Sometimes those help, and they can be combined.  The most reliable way I know to assure a good night's sleep is to stretch (gentle and more on the forward bending spectrum: backbends will wake you up) and meditate (even just 5 minute body scan helps) in the evening.

Right now, I can't sleep unless I do a certain amount of activity to work against fascism, like block walking for pro-choice politicians, etc., having conversations with people who actually care about the horrible state my state (TX) is in and recognize the dark path we're following if we don't enact change.  The more awesome people who tell me they are going to vote the misogynist, racist, classist jerks out, the better I feel, and the better I sleep.

@roseviolet posted:

You might try gabapentin, which calms mind "chatter" and will most likely make you sleepy. I take it nightly for migraine prevention and allowing me to get quality rest, as migraines messed with my sleep. Within an hour I'm falling asleep. I wouldn't advise taking it during the day while at work if you expect to function well or when driving because of the sleepiness it causes. -Rose-

I would agree with what you said about Gabapentin. It's often prescribed for nerve pain or pinched nerves, but I was prescribed Gabapentin for an ideopathic cough that developed and lasted for 2 years after a bout with viral pneumonia in 2019. They typically start you at a low dosage and gradually increase the dosage until the maximum you can tolerate up to a ceiling amount cap. The problem I had was I couldn't even tolerate the minimal starting dosage. The medication makes you feel like a Zombie and realistically could only be taken at night. Which was a big problem for me because the coughing was preventing me from having any sustained conversations at work during the day (I was getting hoarse from little talking, and would start hacking coughing). When you are an attorney and have to be a chatterbox for a living, it's a big, big problem. I was forced to stop the medication within days.

Fortunately for me, the cough eventually petered out on its own with no treatment ever having been effective for it.

I got prescribed gabapentin for sleeplessness during perimenopause.  It made me non-functional.  It was like my head was buzzing/vibrating and I couldn't sleep.  I couldn't do anything else either.  I took it one time.  It was the lowest dose and it was too strong for me.  I also was given prozac, also lowest dose.  It effectively did the same thing to me as gabapentin, so I took it just once.  I just felt wrong, it wasn't relaxing and I couldn't sleep. Prozac did, however, work for a friend of mine. Everyone is different, so just because those things didn't work for me doesn't mean you shouldn't try them.  Gabapentin and prozac have been around for a long time so you can get generics for super cheap.  I'm not sure about the habit-forming nature of these drugs or the side effects. 

Thanks everyone for your replies, really.

An update: I was prescribed a very strong stuff (do not remember the name) and it didn’t work. I called my therapist though, and she told me my insomnia comes from hyperactivity due to stress. I won’t go in detail as what is causing it as I don’t think anybody is interested haha but given the cause no meds work because it’s all psychological AND especially because these two months of benzodiazepines are giving me the opposite effects rn. Not dependency, but the side effects.

It’s not my jpouch, so I am sorry if I made some people alarmed. Stress and anxiety also come from it, but because I wasn’t able to process letting go of my ostomy (which I loved) and the normality I feel with a jpouch as if I have no medical condition or whatsoever. It’s a normality that scares me, although it’s beautiful.

I am going to therapy again rn. I hope I can update with good news.

This sounds like you’re on the right track. Best of luck with the journey!

I am so glad your j pouch works well, and you might find that once those benzos are completely out of your system, you will sleep a lot better.  I am interested in the cause of your stress, but of course you don't need to share.  : )

Good luck with the talk therapy.  That could be just the ticket! 

@Sara Marie posted:

I am so glad your j pouch works well, and you might find that once those benzos are completely out of your system, you will sleep a lot better.  I am interested in the cause of your stress, but of course you don't need to share.  : )

Good luck with the talk therapy.  That could be just the ticket!

- takedown was on august 4th and since the start I resisted the urge till I literally was dying of pain (and had my muscles exhausted), in order to heal faster.
- week 2 post op and I was already going out with friends almost all day in order to “train”, still having stitches and all. also started studying for an exam in september
- studying session were from early morning till over 3am and I was just desperate to pass this exam, I was a walking zombie.
- after the exam I had not even a day off cuz I had to move right away for university: taking care of the house, cleaning and such strained me (rn I have iron deficiency btw, so a less lot of energy in general) same for going everyday to class from 8am to 5pm

- being anxious about the thought of jpouch failing me in these occasions (eg. urgency or incidents during the oral exam of anatomy in front of the teachers, during class…) and when I noticed none of it actually was happening, on the contrary during class time I do not even once hit the toilet made me feel so scared because it is so weird not having to think about… anything? I spent these years worrying about classmates noticing my bag when full, hiding it, ostomy farts during class which I didn’t know how to hide and now everything is just so weird… not having to worry about anything… not even feeling the urge in these amount of hours, forgetting I have no colon, not feeling nor an ostomate nor a jpoucher either… sometimes I wonder if I have blockages since I do not feel anything down there… it’s amazing but so scary. weird. opening my school bag and not seeing that big ostomy bags holder, with scissors and such… I refused the jpouch surgery for so many years, actually going against it and thinking it would ruin my life when it gave me the opposite: feeling PRETTY and CONFIDENT for the first time in my life. It gave me a new meaning of happiness, as if I am owning the world. I cannot believe I wasted so many years and tears over it.

- being late with exams so starting the next subject right away with crazy routines just to make it on time. I swear I’m noticing just typing this stuff how stressing university is rn for me. I feel like I’m on a high speed train which takes no stops.

On top of this, but not really related as if it was a stress reliever tbh, finally letting go of the feelings I had for my best friend whom turned out to be the biggest asshole ever. he was the only one I opened up to about UC, ostomy, and my fear of takedown… long story short: he rejected me but then he got even closer to me meanwhile he was talking to another girl who’s now his gf…I suffered so much the whole summer until I had surgery. Thanks to him being totally insensitive (“I didn’t know how to act”) I finally realised I do not need anybody playing with my feelings let alone with my health, so I finally had the courage to cut ties. we are classmates tho but thankfully tho I wasn’t really impacted at class. But the final meeting was one month post surgery so that gave me some stress and I’m still scarred from this all

also sight problems due to stress, breaking my glasses and being forced to use old ones which leads to constant migraines (just got my new pair yesterday tho)

Well… I guess I talked quite a lot lol

Thank you so much for sharing.  Wow, your life is non-stop and you have been through a ton lately!  And it seems like you barely slowed down to heal from a big surgical procedure.  I hope you aced the exam that you studied so hard for.  Sounds like you're entering the medical field.  Doctor or nurse?

Sorry about that trouble with your former best friend.  It's rough when our support system actually isn't supportive.  I had some friends who completely abandoned me when I got cancer.  They just couldn't handle it.  I think they had loved and lost people due to cancer and were scared to get hurt. Luckily I had other friends (and family) who stuck with me! 

@Sara Marie posted:

Thank you so much for sharing.  Wow, your life is non-stop and you have been through a ton lately!  And it seems like you barely slowed down to heal from a big surgical procedure.  I hope you aced the exam that you studied so hard for.  Sounds like you're entering the medical field.  Doctor or nurse?

Sorry about that trouble with your former best friend.  It's rough when our support system actually isn't supportive.  I had some friends who completely abandoned me when I got cancer.  They just couldn't handle it.  I think they had loved and lost people due to cancer and were scared to get hurt. Luckily I had other friends (and family) who stuck with me!

Yeah that’s basically it. I am still struggling to mentally rest rn, just so much going on. Even my period got affected, I was a Sweden clock 🥲

Doctor! I passed it the highest score and compliments from the professor… my first exam with a jpouch, a real double win!

Family is seriously the most precious thing ever, something you know it’s always gonna be there. We are definitely very lucky.

My sleeping patterns changed after my takedown.I usually fall asleep around 7pm then wake up later to go toilet then back to sleep.I read humans used to go to sleep early and then wake up during the night and do things even visiting neighbours and then going back to sleep.I also wrapped a towel around me at the start to ease soiling concerns.listening to a boring podcast helps as well.

try acupuncture..

@lablover posted:

try acupuncture..

Yes!  I agree. All acupuncture is not equal, however.  It's like finding a therapist.  You have to experiment until you find a good match.

Hi! I don’t know if ppl still receive notifics from this thread, but I am back with updates

My insomnia got so much better. I started therapy and it has helped greatly… I had to take stuff for anxiety (not sleep) but I’m out of it already, and I fall asleep on my own.

I still have the one nightly BM but I honestly stopped caring about it. It is what it is, I’m happy as long I wake up rested and ready for my journey.

I’m just giving myself that time I needed right after takedown surgery: instead of acting like Wonder Woman, I’m just being patient and understanding with my body as it adjusts to a new condition.

I am glad to hear you are doing better! A good night's rest is so important to our outlook on life.

I went on my own quest for a better night sleep after 11 years with a J-Pouch. Like you, I consider it okay to get up in the middle of the night as long as I can get back to sleep easily. That is a win in my book. Recently, I have slept all the way through the night several times and I have increased my capacity to fall back asleep easily. I am chewing a 25 mg CBD gummy about an hour or so before bedtime and I also do about 1-2 teaspoons of psyllium husks in about a third of a glass of water to try to thicken things up. It seems to be working, but who knows---I may just be in a good phase. I am going to keep trying it, however, because I am enjoying the rest!

@RHolt posted:

I am glad to hear you are doing better! A good night's rest is so important to our outlook on life.

I went on my own quest for a better night sleep after 11 years with a J-Pouch. Like you, I consider it okay to get up in the middle of the night as long as I can get back to sleep easily. That is a win in my book. Recently, I have slept all the way through the night several times and I have increased my capacity to fall back asleep easily. I am chewing a 25 mg CBD gummy about an hour or so before bedtime and I also do about 1-2 teaspoons of psyllium husks in about a third of a glass of water to try to thicken things up. It seems to be working, but who knows---I may just be in a good phase. I am going to keep trying it, however, because I am enjoying the rest!

Thank you! I also am glad your sleep has improved! I’d like to try the psyllium husks, maybe later… I’ll start probiotics soon and these usually thicken things up a lot for me, so I’ll see!
Do you eat at a specific time with a specific diet to achieve it? I honestly hate having limitations, but I better ask everything at this point haha

Lots of people on this site say that they eat early and that it helps with sleep.  For me, I try to eat by 5 if I'm going to try to sleep by 10.  On Thanksgiving, I ate later because, you know, other people, holiday, etc., and I ended up getting up about 4 times in the night. 

@Sara Marie posted:

Lots of people on this site say that they eat early and that it helps with sleep.  For me, I try to eat by 5 if I'm going to try to sleep by 10.  On Thanksgiving, I ate later because, you know, other people, holiday, etc., and I ended up getting up about 4 times in the night.

Yeah I guess that’s to be expected, considering also the different and more complex type of food during holidays. Which, talking about it, are approaching soon and I’m so excited thinking it’s gonna be my first New Year’s without the bag! 💗

@xwaterice posted:

Yeah I guess that’s to be expected, considering also the different and more complex type of food during holidays. Which, talking about it, are approaching soon and I’m so excited thinking it’s gonna be my first New Year’s without the bag! 💗

Time for some midriff bearing or hugging outfits!  Show off that stoma scar! 

I usually eat around 6-7 pm. Probably if I ate earlier, it may help with sleeping through the night, but my big socializing is sharing meals with others, so I hate to insist we eat earlier than 6 pm. I also have Nancy's probiotic yogurt about 5-6 days a week for breakfast. I put some homemade granola and blueberries on top and it is a satisfiying breakfast. Nancy's yogurt says it has "41 billion live probiotics" in each 6 oz serving, so I think that is plenty for me.  I don't mind getting up once in the middle of the night, as long as I can get back to sleep easily. That is the tricky part. Of course, sleeping through the night (even to 5:30 or 6 am) is an absolute luxury and I am always happy when it happens. It is a rare gift.  I am so glad you are having your first holidays without a bag!  Enjoy!

Thank you everyone for your replies, honestly they had made me feel so much better. I wish you to spend joyful pouch-holidays in advance!