ulcerative colitis ebook

418 Person Colitis Sleep Survey Results

Adam Scheuer Feeling Crappy to Feeling Happy AuthorTHANK YOU once again to all 418 people from the newsletter who participated in the Sleep Survey!

It is really incredible to see so much participation, and I hope this info will help out thousands of you in the future.

If you can’t wait to read the results of the survey, feel free to skip the next few paragraphs and go directly to the bottom of the page where it says “SLEEP SURVEY RESULTS”.  I won’t take it personally, and we can for sure still be friends,  BUT, due to my past experience in the medical world working at a sleep company, I want to make sure that none of you are suffering from un-diagnosed sleep apnea (or any of your family members) which can most certainly be mess up your life and in severe cases cause heart attacks and strokes.

So, what is sleep apnea?  Well, it is the absolutely most common of all 85 sleep disorders, in-fact 90-95% of all people diagnosed with a sleeping disorder are diagnosed with obstructive sleep apnea or “OSA”.  OSA takes place while you are sleeping and results in obstructions of your airway.  As you probably can already guess, cutting off the air supply to our bodies is not good, and that is just what OSA does.

Think of your airway or air-pipe as a big tube (or small tube).  And when you are sleeping, the airway becomes obstructed or restricted causing oxygen levels to drop because your lungs are not getting enough air.  For some people have total obstructions throughout the night (also known as apnea events), it is entirely possible to cut off the airflow for over 30 seconds.  Yes indeed, that is super scary stuff.

When I used to speak with doctors all day long in San Francisco, I would explain sleep apnea as one of the easiest things to diagnose, but for some reason over 95% of patients in the US (and probably worldwide) are still living with this disorder and have no knowledge that they are flirting with danger.

The great news about sleep apnea is that it is easily treated.  There are many different options, the most common is known as CPAP therapy.  CPAP stands for continuous positive airway pressure and consists of a machine that you setup next to your bed that has a blower and a hose and mask you wear all night long.  Not the most attractive thing in the world, but when used properly, sleep apnea goes away and you start getting a good nights sleep.  There are surgical options, and some other devices such as oral appliances for treatment options too.  You can read up more on all these topics with a simple google search, or better yet, you can talk to your doctor about all of this stuff.  If you doctor doesn’t know about sleep apnea or think its a big deal…well, once again I’d suggest you switch doctors ASAP!  I know far too many patients who have died, had heart attacks, strokes, constant fatigue, lost their jobs, and not slept with their bed partners for YEARS due to un-diagnosed sleep apnea, and it can all be avoided.  Oh, another side effect that these unfortunate folks deal with for years until they discover what is wrong is high blood pressure and weight problems.  Read up on PUB med about this stuff, there’s lots of info there too.

In a super quick Pub Med search, I just found this article which might also catch your attention, you can click the link to read the whole study:

Treatment for sleep apnea by continuous positive airway pressure improves levels of inflammatory markers – a meta-analysis

Signs of Sleep Apnea:

  1. Fatigue (Dr. Dement, the godfather of Sleep Medicine, and author of the book “The Promise of Sleep” which is excellent) says that when a patient complains of fatigue, he assumes sleep apnea until proven otherwise.  That a pretty powerful statement, and something to definitely consider.  Our bodies should not be tired all the time if we are healthy and getting what we think is a good night’s sleep.
  2. Snoring.  Not everybody who snores has sleep apnea, it may just be a very mild case of “Upper Airway Resistance Syndrome”, but if you OR someone you know is snoring all night long, and appearing to choke throughout the night with breathing stopping…WELL I’D FOR SURE place a farm bet down on the line that that/you have undiagnosed sleep apnea.
  3. Waking up with Headaches.  If you find yourself OR someone you know waking up in the middle of the nights with headaches for no apparent reason, that is also a common sign of OSA.  Talk to your doctor about getting tested.  Do yourself and your family a favor.
  4. High Blood Pressure.  In many scientific reports, roughtly 33% of people with high blood pressure also suffer from obstructive sleep apnea, and as you probably have guessed, the OSA is almost always undiagnosed.  Better yet, many people after getting treatment for OSA are able to reduce their blood pressure medications or get off them completely as the heart is finally able to work properly again.  I’ve seen it happen too many times folks.  Again, talk to your doctor if you or someone you know is in this category.
  5. Dreams.  Here’s one that I developed on my own when talking with doctors in SF on good ways to screen their patients for sleep apnea.  Dreams take place during REM sleep.  If you (or someone you care about) has not had or remembered having any dreams for months and years…that’s another possible sign of OSA.  Let’s get technical here so read this next part slowly.  When you fall asleep, it takes time to get into REM sleep.  That is one of the different phases of sleep where you have dreams.  BUT, if you are suffering from sleep apnea and having arousals all night long (waking up unconsciously because your airway is closing causing the oxygen to drop, followed by your brain making your body move to open the airway) there is a good chance you are not having any substantial REM periods of sleep.  So again, if you have not had any dreams for months (a patient’s wife called me once to tell me her husband is finally having dreams after none for over 25 years!  no joke) talk to your doctor about sleep apnea.

How do you find out if you have OSA?  Simple, you talk with your doctor, and get referred to have a sleep study test.  You can do that either in a sleep lab (which Doctor Dement invented back in 1971 at Stanford University) or you can get with the modern day times and have a sleep study done at home with a device that you wear.  You can probably guess what is cheaper…just think how much cheaper it would be if the doctor came to your house to do the colonoscopy test and you didn’t have to pay the “FACILITY FEES” anymore???…  Wouldn’t that be great.  Anyways, I’m done rattling off about OSA, and I hope those of you who fall into (or know someone you care about who does) the OSA candidate boat get things taken care of.  Let me put it to you this way, EVERY SINGLE PERSON READING this post knows a family member or friend who has undiagnosed OSA or you may be suffering from it yourself.  It kinda sucks, but its true, so lets do something about it.  You very well could be responsible for saving someone’s life, maybe your own.

Now onto the survey results, and again, I apologize for the rant, but two weeks ago, a cousin of mine who Michaela and I stayed with down in the South finally got tested after I yelled at him to get it done, and guess what.  SEVERE OSA.  His test resuults showed he stopped breathing 64 times per hour.  But, on the bright side, he is on CPAP treatment for several days now and two days ago he told me he finally didn’t wake up at 3am and slept through the night for the first time in YEARS.  I should add, he has already had TWO heart attacks, and he’s only 50 years old.  OK, I’m done with this topic now.

SLEEP SURVEY RESULTS:

418 people participated from 34 countries, incredible and thank you newsletter group!

Question #1:  Do you feel you get good sleep?

  • 68% – NO
  • 32% – YES

Question #2:  Do you feel refreshed when you wake up in the morning?

  • 72% – NO
  • 28% – YES

Question #3:  How many hours of sleep do you get each night on average?

  • 50% – 6-8 Hours
  • 35% – 4-6 Hours
  • 8% – 8-10 Hours
  • 6% – 0-4 Hours
  • 1% – More than 10 Hours

Question #4:  About how often do you remember having dreams?

  • 30% – Almost every night
  • 27% – 1 time per week
  • 20% – A few times per month
  • 11% – Just a few times per year
  • 10% – Once per month
  • 1% – I have not had a dream in years

Question #5:  On average, how often do you wake up per night?

  • 29% – 2 times
  • 28% – 1 time
  • 22% – 3 times
  • 8% – 4 times
  • 8% – more than 4 times each night
  • 5% – Never

Question #6:  When I wake up in the middle of the night, I most often…

  • 47% – Have to take a pee
  • 26% – Have a bowel movement
  • 27% – None of the above

Question #7:  RIGHT BEFORE I go to sleep each night, I’m USUALLY

  • 55% – Watching TV
  • 21% – Reading
  • 18% – On the computer
  • 2% – Listening to music
  • 1% – Talking on the phone
  • 4% – Other

Question #8:  What do you think about the following…

  • 37% – Colitis affects sleep
  • 13% – Sleep affects colitis
  • 49% – BOTH

Question #9:  Have you ever noticed a relationship between your sleep and your colitis symptoms?

  • 33% – Yes, when I have bad sleep, my UC is often active or flared up
  • 27% – Yes, when I sleep well, my UC symptoms appear to be better
  • 26% – Maybe, its hard to say
  • 10% – No, I see no relationship between the two
  • 4% – None of the above

Question #10:  What tips or ideas do you have that have helped you get a good nights sleep?

  • sleepy time tea helps and be in complete darkness and silence.
  • Relax and unwind before going to bed.
  • Having a drink of green tea I find that helps.
  • Don’t eat.
  • More exercise makes me sleep better. Reading before bed instead of keeping the tv on, a hot bath or shower before bed.. Sometimes I do have to take xanax to get a good night’s sleep.
  • I take Tylenol PM as needed.
  • Get into a good routine.
  • Like eating or exercise you must be disciplined and plan a good night sleep. Select a time that allows for x amount of sleep and try and make it happen. Its difficult but the pay off is the same as eating drinking exercising etc…
  • fresh air, exercise, no booze or caffeine, read, relax, massageI listen to talk radio (boring) with earphone. WIthin an hour I fall asleep.
  • You asked about dreams…I wake up about 6 or 7 am on a day off…and fall asleep. Between then and 9 am I very vivid dreams. Not bad ones..just detailed and complex and I wake up refreshed. When I don’t get that sleep time at that time I am groggy and unrested all day.
  • Plan for it and commit to it and tenaciously fight to get it every day… I have to force myself to get into bed earlier and then slowly it becomes a habit and gets easier. I have to do some quiet time either listening to a podcast or reading and not using my computer, phone or tv for at least 30 min before sleep. I cannot drink too much tea (decaff or herbal) before bed b/c even without lots of fluids I already get up at minimum 2x/night to pee and much more on nights I drank more fluids. When in a flare, this is all chaos and very difficult to control, but if I’m not on prednisone I can sleep and I need even more sleep. I am always fighting the fact that I have a autoimmune disease and need more sleep because of that. At minimum I need 8 hours and it is hard to get that much with everything on your to-do lists. But, I recently was falling apart with severe systemic chronic fatigue and pain symptoms, and have had to make sleep a #1 priority.
  • I’ve always been a GREAT (world champion) sleeper, however the times I have difficulty usually stem from trying to remember things. I write those things down which lets me clear my mind without forgetting anything and relax into sleep. Otherwise it will be waking up to pee, which if it can’t be avoided by going before bed, can be made better by trying not to turn on lights or look at clocks during the trip. That way you can fall back into sleep as easily as possible.
  • Don’t eat right before bed.
  • Try drinking peppermint tea.
  • Don’t eat after 6:00pm
  • Fixed time to sleep
  • exercize and deep breathing
  • If I am really active during the day, I find that I will sleep better at night. (Going for a run)
  • take a zolpidem
  • No dinner
  • hot water bottle, nothing to eat before bed, don’t sleep on my left side…EVER, even when i’m not in a flare!…keep the room cool…”power to sleep pm” or melatonin helps. and xanax.
  • Unfortunately none, looking forward to getting inspiration from others!!
  • Not to eat just before bed time. Turn off all of the lights in the room. Turn off the television and computer before going to bed. There must be absolute peace and quiet when resting.
  • I just tried a mixture of “sleepy teas” that are available at the supermarket. They are all natural and don’t have any caffeine in them so there’s no need to get up and go for a pee at 3am :)
  • Exercise
  • When I wake up to use the bathroom at night, I try to just turn on a small light so the brightness doesn’t affect my circadian rhythm.
  • Heating pads heating pads heating pads!! They ease cramps most nights, makes it a little easier to sleep.Tylenol PM
  • A glass of White Merlot or White Zinfandel–ONLY one and a 3mg capsule of Melatonin. I can at least, usually GET to sleep–but I still don’t sleep all the way thru as a general rule. But you know what they say: some sleep is better than no sleep.
  • take exercise try to relax and if you are in flare up try to be positive and stay strong
  • Ease your mind before bed, meditation, a nice cup of a hot beverage, cuddle.
  • Warming a heating pad on your shoulders to get you warm and comfy.
  • Listening to soothing music.
  • Eating 2 hours before you sleep. Doing a light exercise before bed to help tire you. Take a warm shower if you have trouble sleeping.
  • Don’t oversleep. It will prevent you from getting a good night’s sleep the following night.
  • Try to do some mindfulness about 10-15 mins worth before bed or PMR (progressive muscle relaxation) helps also to feel mentally and physically relaxed. Don’t eat a few hours before bed. Try not to Drink much either.
  • Consentrate on the amount of sleep I get rather than the amount of sleep I don’t get.
  • Try to take Steroids two hours before your planned sleep time or else you will never get to sleep. Sleep meds seem to have no affect if you are woken up for a BM at night, so throw that idea out the window.
  • My friend who is a yoga instructor gave me some stretching and breathing exercises to do. I find these relax my body and mind and put me in a good place for going to sleep. I also have a “bed buddy,” available in most drug stores which is a sack of microwavable beads that I’ll warm for a minute or two in the microwave and take to bed with me, the warms sooths my tummy or achey joints and comforts me.
  • When in a flare I would try not to eat too late at night so that I wouldn’t have to get up as much. Other than that it was just forcing myself to go to bed earlier than I normally would because I knew that my body needed the sleep to heal.
  • Melatonin Pills
  • Try not to eat prior to going to bed.
  • Take sleep pills
  • Turn off the tv, and take a long bath or shower, wash your hair, use lots of good smelling soap and shower gel, bodylotion, et cetera. Then go straight into a bed with fresh sheets and read a book. No phone or computer! Then, when you want to go to sleep, go to the toilet en poop as much as you can so that most of the poop is out. Then, you should sleep quite well!
  • Its very strange but taking an antiemetic and some painkillers before sleeping has the side effect of making you very tired very quickly. I noticed this when I was on IV of this in the hospital and literally fell asleep as soon as I was dosed with it.
  • Using ear plugs as I’m a very light sleeper and don’t drink anything within an hour before bed and you shouldn’t need to get up during the night to pee!
  • Earplugs followed by big padded headphones playing white noise to drown out noisy neighbours, and not going to bed really hungry.
  • Should turn of the tv and computer and try relax my mind avoid food late at night and caffeine
  • Don’t plan too much for the next morning, don’t eat much at night, if you wake up in the middle of the night, don’t allow thoughts to enter your mind. Just think about your breath going in and out.
  • Pillows around my body, not taking steroids unvluding enemas at nighttime. Taking xanex sometimes.
  • Do not eat too much at night and go to sleep earlier.
  • Eat a light meal before going to bed, something thats easy to digest. Try to empty your bowels before sleeping, this will give you at least 3 or 4hrs uninterrupted sleep. Try a rectal med just before going to bed if you’re flaring
  • Try to go to the bathroom right beforebed
  • Take Imodium and a sleeping pill, that usually does the trick ?
  • Valerian Root and Melatonin. Tea that helps with digestion.
  • I downloaded some meditations that got me to focus on relaxation of my whole body, so even if it wasn’t sleep it rested and kind of refreshed me. I also just downloaded a couple of thunderstorms and crashing waves which were excellent at getting me to sleep.
  • Get off the computer. Read or do homework, keeping a blowdryer to the stomach preferably under a stomach enclosing blanket (to warm up and relax stomach muscles). Turn off the blowdryer right before turning off the light.Work d whole day n normaxin helps u get sleep
  • Don’t watch TV or surf the internet in bed
  • I’m repeating myself when I say I get a “good night’s sleep” because I take 1 mg of Ativan each night. I cannot recommend taking Ativan to anyone. That’s between you and your doctor. It usually gives give me a solid night’s sleep, and I’m thankful for that. But, I would love to be able to taper off of it. Ativan hates interruptions; it can be very hard to fall back to sleep on Ativan. In that way, it’s very restricting….
  • In my last flare up, in the ER I met late-shift nurses who rely on klonopin, which I understand is even stronger (and harder to taper off), to calm down enough to sleep. I’ve watched a number of videos on Youtube in which people portray their withdrawal symptoms ordeals.
  • Throughout my adult life, especially since my mid 40s and 50s, I’ve prioritized sleep and exercise. Even at almost 58 years old, I love to exercise (walking, especially uphill), and a strenuous workout helps me to sleep heavier and beyond the time span of Ativan. Eating turkey and milk products also seem to help me to sleep.
  • don’t lay there thinking – read or watch mindless TV
  • reading & meditation.
  • Get exercise during the day. Stay off the computer at night
  • long baths in epsom salts, reading, omit caffeine, meditation
  • Eat Good foot and light before sleep
  • Eat less before you sleep?
  • No TV, phone calls, electronics , reading and comfortable temps are helpful , I love when it rains at night , puts me to sleep
  • Sleep aids
  • Tylenol pm
  • Take something to help you get a better nights sleep. Cammomile tea, sleeping tablet or somethiing to calm your nerves.
  • Ambien
  • I take the prednisone just before I go to bed and hope I get to sleep before the medication kicks in
  • Don’t eat late meals, try to use the bathroom before you go to bed
  • Try to go to bed at about the same time
  • Giving up gluten, dairy, sugar, and caffeine made me feel like I was reborn. I have more energy during the day,I sleep better at night, and I am happier than I have ever been in my life. And when Mom’s happy everyone’s happy :-)
  • Eat as early and as far ahead of bedtime as feasible/possible.
  • Take out all digital lights from your sleep space. Digital clocks, lights on computers or cell phones, electronics etc. completely dark. Maintaining a regular sleep schedule and committing to a regular bedtime is vital. As is regular physical activity.
  • Hot bath, no alcohol, no TV or computer work just before bed.
  • Try not to worry and quieten your mind! Things always seem much worse in the middle of the night.
  • Try to not think of anything negative. Focus on your breath and staying calm whilst thinking positive thoughts. Massage your stomach/belly button at night. Glass of milk / chamomile tea.
  • Meditation Prayer Light stretching/exercise
  • Exercise, exercise, exercise. Be active, get involved, eat well and just treat your body like the beautifully-engineered machine it is. This doesn’t mean going over the top. I enjoy a social drink and foods the health experts might frown at, but balance is everything.
  • When I get the best sleep is when I either skipped lunch or had a very light lunch. I also take my meds right before I go to sleep so they last most of the night. If I take them with dinner, like it says to, I wake up around Midnight and can’t go back to sleep because of cramps.
  • Evacuate the bowels before bed… Read, have a cup of tea, relax. Get in a really good routine if you’re on steroids to avoid insomnia.
  • It may seem strange, but I sleep on a yoga mat on hardwood floor. My knees have never felt better and I stay asleep longer and wake up easier. Haven’t had a flare while I’ve been sleeping this way, but I only discovered this a couple months ago.
  • Drinking ginger tea or mint tea an hour before bedtime has helped. Staying away from Sugary foods late at night. Having yogurt before bed. Sleep with a pillow between your legs laying on your side to take pressure off your back and midsection.
  • Would love to know if it is the reason I beacame a light sleeper.
  • My job is quite physical so I don’t really struggle to sleep
  • Relax before you go to bed and take a sleeping pill if necessary.
  • Go to sleep at the same time.
  • I read at night and that seems to help me drift off, but it’s then staying asleep that’s the trouble, if I’m having a flare up normally I hot flushes at night.
  • It helped when I started taking my medicines in the morning instead of at dinner time. I was “sweating the bed” badly and would have to change sheets and clothes during the night. When I started taking the meds in the morning, the night sweats are much better, actually mild now.
  • I HAVE FOUND WHEN I TAKE ANTI DEPRESION TABLETS UC CLEARS UP WORTH LOOKING INTO MAYBE
  • Do meditation just before going to sleep.
  • When I started the SCD/GAPS diet and really cleaned out my system, that was the best time I have had regarding sleep. My nightmares went away (which I realize I had had many and often). Also leg cramps stopped, and obviously night colitis pains stopped. Night sweats also stopped. Now I’m still good, but with occasional nightmares, so I would say the change in diet has helped the most.
  • Don’t worry about colitis and try your best to have a nice evening :)
  • Keep a regular sleep schedule.
  • 1) sleep on fixed time do not over stress your body 2)tie your eves with cloth so that light in early morning do not disturb you 3)put cotton in ears before sleeing so that your sleep is not disturbed because of noise 4)min- 8 hours of sleep
  • Sleep in a completely blackened room – no light at all. Don’t eat or drink anything with sugar in it before going to bed (soda, munchies). Don’t sit in a brightly lit room before you go to bed Don/t be on the computer for at least an hour (or more) before bed.
  • A good sleep for me is the one with over 8 hours. go to sleep early and get up early, not too latein the morning
  • I can only think the reason that the colitis wouldn’t affect my sleep is that my flare decreases.
  • I can only think the reason that the colitis wouldn’t affect my sleep is that my flare decreases.
  • Focus on breathing…. as people do when they meditate. Nothing else works for me. Sleeping pills when I am exhausted. I break down and take one because my body needs a good nights sleep. (1-2 times per week)
  • light yoga, meditation and a little reading before bed… nothing too overstimulating. NO TV or late night eating makes a huge difference! Sleeping in a dark room with no electronic devices. A snuggle buddy (human or cat) :)
  • Swimming, walking, any form of exercise helps me have a better nights sleep.
  • You have a choice. Eat during the day and poop all day. This could mean an accident or job loss. Eat at night and loose sleep. I choose to keep my dignity and poop at night!
  • KLONAPIN/XANAX
  • Good sleep hygiene! I can’t stress this enough! Go to bed when you’re tired. Wake up around the same time each day. Get exercise. Go outside everyday. Don’t watch tv just before bed. Don’t stay in bed if you can’t sleep after 30min. Use your bed for sleep and getting cosy with your partner and nothing else! Positive sleep thoughts!
  • Well what happens with me is I suffer with fatigue because of the U.S so every now & then I will have a big sleep i.e. maybe fall asleep when I get in from work & not be able to wake up properly for at least 10hrs, also I read sometimes to help get me off to sleep, also for me I only got diagnosed last year & I have been lost a bit ever since so my mind is always ticking over thinking what symptom am I going to get next :-(
  • My doctor prescribed Amitriptylin for sleep. This medicine is also prescribed for anxiety and can also alleviate some of the spasms. I am still in a mild flare but I have been able to get some sleep thanks to this script.
  • Dont eat 2 hours before you go to bed. No caffeine before bed. Try to go to bed before 10pm as other that your body clock changes
  • Sleeping pills and Imodium.
  • Go to bed early and drink water
  • I use sleeping aids. I limit my use to twice a week.
  • Seeking tips and ideas!
  • Exercise at 6am 4 times a week!
  • I’ve tried a lot of things… Hot baths before bed, tea, working out more, melatonin, unisom, etc… I think for me it is just trying to clear my mind, put on soothing music and zoning out!
  • I don’t really have any advice for me to get 5 hrs sleep is a good night. I typically don’t fall asleep before midnight and my alarm goes off at 5am for work. When was in a flare my sleep is less because I’m not as active. In the future I am planning to set time aside to work out and exercise (something I’ve never done) so I will be tired and hopefully sleep more.
  • For me, a glass of almond milk when I’m not in a flare. When I’m flaring, I just try to find the right position to lay in bed to where it doesn’t hurt.
  • NO caffeine, no chocolate,no sugar, no wage 2 hours before bed. It sucks!!
  • Clonopin .5mg
  • If you find some, please tell me!! :-)
  • I obviously do not have any suggestions as I barely sleep at night. :(
  • most importantly – our new organic Ergo bed. Am no longer sore when I wake up in the morning. I don’t wake up in the middle of the night anymore from achey hip or shoulder pain. AND, I am in remission. Sleep and colitis go hand in hand. Get off the computer. Stop using at least an hour before bed. Read – a much better relaxant.
  • I really don’t have any tips, or I would be getting better sleep myself. I am still new at this. I was diagnosed with UC in January with my first flare and was “upgraded” to pancolitis this past month with a very stubborn second flare – so painful and gross. I get very little sleep at night; however, partial credit must be given to a loud snorer a foot away.
  • Reading before I go to sleep relaxes me. It seems to be a cue to my body to slow down. Makes for some tough times if I have to read during the day for my work … napping at work is frowned upon :)
  • I take sleep aids though many fewer than I did a few years ago. Trazadone with .25 alprazolam if needed, but often without the latter.
  • Going to bed earlier ie 10:30 seems to give me a better nights sleep as opposed to going to bed at midnight
  • If I take two tylenol when I can’t sleep, it seems to help pain and restlessness and I often go back to sleep.
  • Develop a regular wind down sleep routine and never deviate from it. If you normally go to bed and get up at the same time stick to it regardless of the situation. See a sleep disorder specialist .
  • Less TV, and go to bed early. Stretching before bed seems to help me.
  • you must go to bed earlier when is a flare takes two hours to go to sleep
  • Reduce artificial light, eat early, no naps during the day unless absolutely needed.
  • Wearing a sanitary pad to bed. Taking sleep meds, i.e. melatonin or Sominex.
  • I sleep very long hours. I get at least 10hrs of sleep. I go to bed early 8pm.
  • - have a nite time routine i follow every night,drink soothing herbal tea just before going to bed, go to bed and wake up always at the same times, listen to an ericksonian auto-hypnosis soundtrack for falling asleep, no cafeine after 2pm, no sports after 7pm
  • When I’m in a flare, I sometimes use a heating pad on my abdomen, and it helps me sleep. Even for a little longer then when i don’t use it.
  • I try not to eat late and take my medicine at least a few hours before I go to bed. Also I try to relax before I get in bed by watching tv and not moving around to much.
  • I take Ambien or Restoril and only get between 3-4 hours of sleep before I wake up.
  • prayer, slow down my routine prior to going to bed, i now use these great sleeping headphones called sleepphones along with an ipad app that plays isochronic tones and other sound effects. The sleepphones also cover my eyes which keeps things dark and the sound blocks out other distractions.
  • Sleep well,, not too much sweets or liquids at nite. Last drink 2-3 hrs before sleep. Unfortunately don’t follow much.
  • Read using a Kindle Paperwhite – all other lights off until you fall asleep.
  • Plan your sleep. What time do you need to go to bed in order to get optimal (roughly 8 hours) of sleep? Then, what do you need to do to unwind before that time. For example, I need to have lights out and tv off at 10pm. That said, I make sure that I am in my bed no later than 9:15 and I unwind with a book or a non-action tv show (typically a cooking show). If I can, I try to drink some chamomile tea around 8pm so that I have enough time to get it through my system to make me tired and also so that I can try and get it “out” before I go to bed.
  • try to clear your mind of any stress!
  • Take sleep pills
  • Don’t eat just before going to bed. Go to bed when you are tired listen to your body
  • Taking valum or Xanax to calm
  • A warm shower before bed. A supplement – 50 mg of 5-HTP from the health food store. I have an Earthing half sheet at the foot of my bed. This sheet helps me a lot. My room is a mess and I suspect I would sleep better if my room was clean and tidy. Giving thought to the next day and making my mental plans and planning my clothes helps. Self-talk, i.e. “I’m going to sleep well tonight. I’m going to wake up refreshed, feeliing good, and happy at ____ (insert hour). Thinking of my blessings. And I sleep with lots of pillows surrounding me — they add comfort.
  • Going to the toilet before bed and also plan my meals so that my stomach is empty before bed, then I eat something filling and it tends to keep my bowels occupied for the night. The digestion also makes me really tired, sometimes helping me to sleep better, though not always.
  • Do not eat 4 hours before falling to sleep. Once waking up try not to jump up immediately. Wake and lay there for few minute and gentle rise up to get going.
  • Exercise
  • I eat a banana right before bed ,,
  • exercise, do not use the computer before bed time, maybe read some. Have prayer time just before going to bed
  • Don’t eat or drink a lot before bed; hence, wake-up call duty in the jolly john. Watch what foods you eat – higher fiber foods work fast. I also work 12-14 hour night shifts for three nights on average straight – timing my dinner is important. Don’t take probiotics before you go to bed. Drink a sleepy bye tea – a few hours before bed.
  • Relax and have patience, dont worry
  • Sleeping pills do help getting a good next sleep or taking benadryl before bed helps you fall asleep.
  • Sleep whenever U get time in the whole day
  • Don’t eat a few hours before bedtime.
  • none. Still trying to work it out myself. Just when I think I have the answer, my body changes the question.
  • Try to go to bed as late as possible although even this doesn’t always work.
  • Eating three to four hours before bed. If I eat something right before bed I for sure will be up sometime in the night to have a BM. I haven’t had a good nights sleep in over two years.
  • Eat a couple of hours before sleep,Do not work / be on your computer for an hour or 2 before you plan to go to sleep,both of these and an ayurveda drug called Brahmi Vati (a relaxant of sorts) help me when i have a flare up
  • You may need to get up for a pee a few times, but drinking lots of water through the day and night always helps. Keep off the usual tea and coffee, take decaf if possible (major change in my life) but keeping hydrated helps everything keep clear. Also, try and not eat too late, stay off the takeaways and spicy foods. I saw a dietician for a year, and as the year went by, my bowel improved HUGELY. Couldn’t believe the difference. I officially have my life back, it was such an unbelievable turn around. I went from 10 to 12 times a day (not kidding/ no life what so ever) to 1 to 2 times a day and i couldn’t be happier. I have a life again, and i appreciate life so much. Looking for that special someone too ;) x
  • When things are bad I usually go the bathroom or sit on the toilet for about 15 minutes or so before I go to bed. When things are decent or going well I only go when I have to or first thing when I get up.
  • Can’t help you. I’m just a naturally good sleeper.
  • I drink Sleepytime tea. Also, it’s better to avoid eating three to four hours before bedtime. During a flare,its hard to sleep deep. If at all possible, take a 20-minute cat nap or two during the day to make up for sleep lost at night.
  • I wear ear plugs to block out my husbands snoring and I like it dark so I wear an eye mask. I also take the lowest dose of Kolonipin which I don’t like to have to do every night but I do, so I can assure myself a solid 6-8 hours if I’m lucky. I also use a few drops of Lavender essential oil on my eye mask and a dot under my nose to calm my thoughts, particularly if I’m in a flare. I keep the window open for fresh air and I also keep myself warm under the covers. Whenever I have the strength and energy to exercise I notice I sleep much better too.
  • Trying to not move so much in bed I feel helps everything calm down and not make you have to go to the bathroom as well as I go to bed earlier yo ensure I get that extra sleep
  • Listening to calming music for a half hour to an hour before bed helps. Meditation also helps. And going to bed early. If I stay up past 10pm, I’m done for.
  • I use a heating pad almost every night to help calm my stomach cramping.
  • Waking up early to go to the gym encourages me to sleep earlier and maintain a timetable for when to sleep and when to eat. The disease is better managed when there is a timetable or schedule for when to do things as this results in less stress.
  • When I get in a good a routine I feel that I can get a good nights sleep. I usually exercise in the morning, eat 3 good meals, and exercise in the evening.I will be anxious to hear from other people as I have no tips
  • I have tried several sleeping methods. The key things which have helped me, although my patterns are not in any way perfect…1) Using a black-out sleep mask to minimise any light creeping in!2) Using a product which is supposed to ‘de-stress’ you, promoting a better night’s sleep.3) Memory foam mattress! – Heaven!!!4) Getting into bed earlier, as I know I will be awake at 5am to use the bathroom. Getting into bed earlier also gives you a longer time to settle into bed and fall asleep comfortably.
  • Be in bed by 10:00 pm and do not listen to talk radio. Getting sleep before midnight usually gives me better rest.
  • I have a goal of getting to bed by 10:30 or 11:00, and getting 7.5 hours sleep. I started tracking when I go to bed and get up, which forces me to recognize how often I miss my goals.Avoiding stress which I know isn’t always possible. Don’t nap for more that 10-15 minutes during the day. Try to keep a routine ie. same bedtime each night. No alcohol before bed. I know some people say no tv or computer before sleep but I’ve never seen a correlation for myself.
  • Medical cannabis helps me more than any prescription I get from sleep specialists, plus no side effects in the morning. Other than that, having a Neo Citran or spoonful of Nyquil right before bed (even when I am not sick), will help keep me sleeping longer.
  • Hot bath. Tea (lavender/camomille). Gravol.
  • Work out extra hard so your so exhausted you go straight to sleep and usually stay asleep
  • Have some pepper mint tea, it calms the stomach down. Any try not to eat just before you sleep.
  • Getting some form of physical exercise during the day seems to help me.
  • taking Tylenol PM is often the only way to stay asleep, however getting to sleep is a struggle for me.
  • Try to turn off brain/ thought patterns. I use repettitive thoughts ie breathe ( whilst breathing in) sleep (whilst breathing out)Helps turn off the brain and concentrate on breathing and sleeping. Even if i dont drift off to sleep at least i rest.
  • drink your water intake for the day before 6:00pm. read before you sleep.
  • Noise or even soft music. Making sure I accomplished everything for my day so I don’t feel unfinished.
  • Not eating late . Doing a affirmation everyday ” I love All the great benefits I now get from sleeping every night 6 to 8 hrs. I started saying this’s out 30 days ago, and preparing for sleep about 1 hr before I go to bed by not doing things that get me all geared up by trying to go to bed around the same time. i have done this for almost 30 days and I am sleeping every night for the first time in 20 years. I answer the survey the way that I have been for twenty years not the last month
  • Deep breathing and/or body scan relaxation technique.
  • I listen to a guided imagery tape.
  • Meditation
  • Sleeping pill, but not refreshing sleep
  • Reading gets me to sleep really quickly but doesn’t help with the waking up
  • Pay good money for a decent mattress. For me it was at least 1000 coils in the queen size mattress that made the difference.
  • I try to go to bed early and turn everuthing offf, tv computer lights .
  • Benadryl or sleep aid
  • Don’t go to sleep till your tired…I think it’s best to sleep on your back, not on either side, especially the left side since colitis is a “left side” disease.
  • Establish a routine that gets your mind off worries and what you have to do tomorrow.I play solitaire on my ipad right before I turn out the light. Then I listen to talk radio on my iphone with ear buds. My husband snores so this helps block that out and the talk lulls me to sleep. I don’t listen to anything upsetting, just stories.
  • Hot bath and if nothing works :Zopiclone
  • Narcotics like codein help slow the digestive sys and help with bowel movement frequency over night. Lomotil is another narcotic that is suppose to do the same, but has zero effect for me.
  • For myself the “bad sleeper” no tea after 12 noon.
  • If I have too many nights with less than 6 hours of sleep I take an over the counter sleep aid.
  • Ambien
  • Exercise and relaxing tea, relaxing meditation used for stress and anxiety.
  • It’s easy to worry about things when you’re lying alone in the darkness and silence doing nothing… But worrying definitely keeps me up! When I notice I’m starting to worry about something, I promise myself I’ll worry about it tomorrow instead and that really does help me to not worry at night. If I just tell myself I’m not going to worry at all, that doesn’t work, but if I put it off until the next day, that does.
  • knee pillows and 5-HTP
  • I try to pay attention to what I eat for dinner and I try to use the restroom before I go to sleep.
  • I started taking all my medicine at dinner so by the time I go to sleep, I have the comfort of knowing it’s well into my system. I also wear an eye mask and ear plugs to block on noice and light. I know that is not coltis related but anything to help me doze!
  • Heading to bed early and reading to wind down always help me sleep better.
  • Exercise helps me when I’m in remission, because I don’t really sleep that sound even when my symptoms are low. Not sure if that is a med side effect or anxiety problem. When I flare I just try to sleep as often as my body wants.
  • When I think positive and don’t care about what stresses me I love myself and I love my body to be always in good shape and well…
  • Take Natural Calm, a magnesium supplement.
  • wish I knew… not too much alcohol seems to make a difference
  • Don’t eat for a few hours before bedtime and no TV in the bedroom!
  • I start preparing for bed mentally hours ahead of time. If I am at all hungry, I eat some cheese and crackers before bed. I take an antihistamine for my allergies (Benadryl) before bed.
  • Don’t think too much before bed and don’t use electronics right before you’re going to go to sleep.
  • Relax. Read. Get plenty of it!
  • Reading or listening to music before bed or even soft tones like ocean waves or crickets type thing. I love ocean waves and my husband likes to listen to “night noises.” Limiting food/water before bed and just taking a few minutes to unwind before you lie down. I find it helps to clear my mind and make my sleep more restful.
  • Have a BM RIGHT before you go to sleep
  • No caffeine, no alcohol, no TV, daily exercise, cool room. Tylenol and Benadryl when that fails.
  • Finish eating 2-3 hours before going to sleep, and generally eat less for dinner than other meals.
  • Stilnox
  • No TV or computer for an hour before bedtime – just read a book. I go off to sleep listening to a gentle guided meditation track on healing that lasts 20 mins and almost always go off to sleep before it’s over. Camomile tea 1.5hrs before bed. Please, everyone, track down a preparation called “Gut Relief” by Nutrition Care. It helps with all aspects of UC.
  • Sound machine, meds, meditation
  • I would say, early nights are better and when you have flare ups you need sleep as much as you can, having small meals specially at late evenings does help, Even having a shower before you go to bed helps for a good sleep
  • take naps whenever you can!!! if you don’t sleep at night and get tired at 4 pm the next day, take advantage. the hours add up all day when you think about it.
  • Exercise seems to help. Also have resorted to a children’s dose of Benadryl 14.5 mg
  • Don’t eat right before going to bed, have at least a couple of hours eat free before sleeping.
  • Eliminating caffeine helped me a lot – even though I was only having one cup in the morning. One of the things I use to manage my UC is yoga and relaxation techniques – these help my sleep a lot as well!
  • Taking 2 x 400mg Calcium tablets just before going to bed helps!
  • Meditation and calming musicHumm. I find melatonin and high doses(600mg) of theanine fairly effective. I also use the blue blocker glasses. Taking vitamin first thing in the morning seems to help. Avoiding food with glutamate in the evening/afternoon seems to be helping: http://www.sciencedaily.com/releases/2013/05/130507134600.htm  I’ve also just ordered some Phenibut: http://en.wikipedia.org/wiki/Phenibut  I have been trying to find a side effect less tool to give me consistent sleep >6 hours for a long time. I have tried the conventional stillknoc etc and they make me feel like crap.
  • Stretch n meditate half hour before sleep. Lights out by 10:30.  Liberal does of Single Malt whisky gets rid of my angina which occurs most nights when I lay down to sleep. this is called Prinzmetals Angina and is rare.Unfortunately I cannot get a doctors prescription for Single Malt Whisky.If I want to fall asleep, I bring a magazine to bed and start reading. Reading always puts me to sleep.  Taking LDN….lol….
  • I drink green tea in the evening, avoid caffeine after 3:30, and sometimes chew on some cannabis leaf a couple hours before bedtime. That really seems to calm my system down and allows for a good nights sleep.

THE END!

PHeeeew!

I wish you all a very good night’s sleep tonight and every night moving forward.  If you have any questions regarding sleep or sleep apnea, I will most certainly try to provide you all with answers as long as you write your questions/comments BELOW in the comment section.

Very truly yours,

 

Adam Scheuer

founder of iHaveUC.com





18 Responses to “418 Person Colitis Sleep Survey Results”

  1. bevJune 6, 2013 at 2:52 pm #

    Thank you for all your hard work Adam.

    Much appreciated!

    Bev
    :)

    • AdamJune 6, 2013 at 3:11 pm #

      Thx Nev! And thanks x1000 for all your support here:)

      • bevJune 6, 2013 at 3:24 pm #

        :)

  2. CarolineJune 6, 2013 at 5:02 pm #

    fantastic work Adam. Such useful information. Many thanks. :-)

    • AdamJune 7, 2013 at 4:03 am #

      Thanks Caroline, I’m glad this is useful for you!

  3. shelly in maineJune 6, 2013 at 5:31 pm #

    Wow Adam,
    Another great survey and loved all the info.
    Sleep well, Shelly. :-)

    • AdamJune 7, 2013 at 4:03 am #

      What up Shelly,

      I got going more than usual at the beginning there, but at the same time, we need to do all we can to get some good sleep.

      Take care,

      -Adam

  4. Laurie in DorrJune 6, 2013 at 5:48 pm #

    I have found meditation works for me: Deep Relaxation through Guided Imagery and Relaxation Music. I still get up a couple of times a night but my sleep is deep and I don’t wake up with a headache. Even during a flare…

    • AdamJune 7, 2013 at 4:05 am #

      Yo Yo Laurie,

      I haven’t done it too much, but my wife bought some guided meditation music on Amazon and we’ve listened to it several times before falling asleep. I usually am conked out before it over…so seems to work great. Glad you’re finding some good sleep!!

      -Adam

  5. Laurie in DorrJune 6, 2013 at 5:49 pm #

    oh and thank you for all of the other great ideas!!!!

  6. Ann SmithJune 6, 2013 at 10:03 pm #

    I just tried something new & it helps! I use “blinders” to black everything out. I recognized the fact that any kind of light, either from street lights coming through the blinds, LED lights from cell phone or any kind of light keeps me wide awake. The covering over my eyes absolutely helps!

    • AdamJune 7, 2013 at 4:05 am #

      What up Ann,

      Hey, whatever it takes to get a good night’s sleep! Congrats to you

  7. Jen From UK
    JenJune 7, 2013 at 2:51 am #

    Will be getting my Dad tested for OSA as soon as!!! Thanks as always sterling job Adam xxx

    • AdamJune 7, 2013 at 4:07 am #

      Hey Jen,

      Great first step, and this makes me so happy to read someone doing something instead of just dealing with it. When people suspect OSA for themselves or others and actually do something about it, it truly can be the beginning of a new life. I wish you both well no matter how things turn out.

      Best to you guys,
      Adam

  8. Tony (UK)June 8, 2013 at 12:07 am #

    You are an amazing guy Adam and deserve a heap of praise for all your hard work. My solution for getting a good nights sleep is, two Co-Codamol and a hot water bottle, mind you it doesn’t always work.

    • AdamJune 8, 2013 at 11:08 am #

      Thanks so much Tony. Much appreciated, and way cool to see another one of the original users of the site from the olden days here once again!
      Glad you’re getting some good Z’s, and do me a favor and try to help out someone you know who is unknowingly suffering from OSA. Unfortunately we all know them, but there is for sure life after getting past it.

      Take care,

      -Adam

  9. Tony (UK)June 8, 2013 at 11:35 am #

    Have pre-empted you Adam and sent a link via Facebook to a friend who I know suffers from sleep deprivation. If I can help someone via you it costs me nothing and makes us all a little happier, that can’t be a bad thing can it.

    Have a great day Adam in that beautiful Californian sunshine.

  10. RichardJune 11, 2013 at 10:19 pm #

    a great collection of tips, think I will try the no caffeine and some yoga. Beeing a Brit I love my Tea so I really need to find something to replace the caffeine stuff. Had peppermint many times but it gets boring!

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