Sleep Issues with Crohns Disease/IBD

I just have a question for every one with Crohns disease/IBD, I know this may not effect everyone but I am getting desperate!!! I CAN NOT SLEEP! I have been diagnosed with Crohns disease/IBD for 9 years now, and I can NOT sleep, am I the only one? Could this be something related to my Crohns disease? My doctor had me on Ambien- It worked really well for a month or two than completely stopped. He even upped it to two, 10MG pills a night, and it just wont put me to sleep. Than he put me on Tresadone, it did nothing, he upped the strength to the max and once more nothing, Than he put me on Remeron, which worked the first night than nothing. So he has me on Xanax now, and that is at 2mg and it does NOTHING! It worked the first night, but its like I build up a tolerance to them or something quickly.. I am on Remicade... I wasnt sure if that could be anther reason it may not be working for me. Im getting so desperate to sleep, I stay up till about 5am than fall asleep for an hour than Im up again till the following 5am. I get 1-2 hours of sleep a night. I cant take it much longer, and yes my crohns is still in a semi flare, I did have a resection in January. I wanted to see if anyone else had the same issue as me, or even if it is possible it could be my crohns causing this sleep issue. And if it is, what has worked for others besides the ones I posted, and my white blood cell count is super high which it always is and stays that way even with remicade. It always lingers around 21.2-28.1 (I was sent to an oncologist for cancer study to be sure I had no cancer, or any blood illness they were missing. But he couldnt find anything, but I get blood taken every 6 months now from the cancer center to follow my white blood cell count). Im so tired but cant sleep I will lay there with tv off, phone off, lights off, and just want to cry. Im bawling my eyes out as I write this. Im so tired (And yes Iv tried Melatonin, nothing..)

I'm going through the same thing... yesterday (Sunday morning) it was 8:23 AM ADT (I was up all night and didn't set my clocks back) when I last looked at the time before I finally fell asleep. Then I was back up at 11:30. On many nights I get only 2, 3 hours of sleep. I'm also on Remicade... a very high dose... 10 vials per infusion every 5 weeks as of Tuesday. This is a new symptom to me... just the last few months. And it doesn't seem to be getting better. My GP gave me sleeping pills, and they seem to work when it is only pains, cramps that keep me awake... but, other times, it is like my mind is in overdrive. I 'think' (but I've got no medical, scientific knowledge or training to back up my theory) it is like my brain is on an adrenaline rush. When I was a young man, I worked a whole lot as a bouncer. Got into a lot of fights... and I seem to recognize the adrenaline rush that I'd get after a fight. Anyway, I don't know if it is an effect of the disease (I had nothing like this in any of my prior bouts with this disease... I used to sleep like a baby) or if it is a side effect of the Remicade. Whatever it is, I commiserate with you. It sure isn't fun.

I've had that same issue for years. I've only found limited success. Sleeping pills rarely work. Doctor put me on amytriptaline...worked for a month. I definitely feel for you.

Currently I'm trying to wake up early and stay up until 10 pm. I walk as much as I can everyday. Success is hit and miss.

I have the same issue. I can go to sleep for a 2-3 hours then be awake for hours afterwards. Sometimes it's my husband's snoring, other times my legs or foot ache or I just wake up for no reason. I've complained before about not being able to get to sleep and stay asleep. Doesn't matter if I'm in a flare or not though...

Sounds like you need to do a sleep test. There are many reasons for lack of sleepm and I am afraid that hypothesizing at this point likely won't be too successful. Sleep is essential. Ask for the sleep study.

I guess I ask my normal doctor or could I ask my GI for a sleep study? My doctor just ordered in Serquil tonight, and I just took it, Im still waiting to see how I feel. Im seriously hoping it works and stays working, but Im getting so stressed with it. I know my mind isnt wandering, and Im not anxious or anything, I dont feel depressed. I litterally clear my mind and just still dont fall asleep. Sleeeeeeeeppppp sounds soooooooo good lol. Im glad Im not alone with this, its so stressful.

Lollakins asks a very important question. I'd like to start an answer from a general perspective and then address the issue from the chronic disease perspective.

Insomnia is a symptom, not a diagnosis in and of itself. Anything from depression/anxiety to jet lag, diet, stress, medical conditions, medication, sleep environment, shift work, travel etc... can screw up sleep.

Obviously the first step is to find the cause and treat the underlying issue ( common medical conditions causing insomnia are thyroid problems, diabetes, sleep apnea, obesity, depression, anxiety.) then throw in meds- steroids, caffeine, nebulizers, cold meds.

Regardless of cause the first step is to ALWAYS address sleep "hygiene"
1) Go to bed and wake the same time EVERY day regardless of amount of sleep
2) room should be dark and cool
3) Bed is only used for sleep and sex. NO work, paying bills, watching movies.
4) Exercise daily, but NEVER less than 3 hours before bed- to fall asleep our bodies must drop 1 deg F from normal (thats why we use blankets.) Exercise raises body temp and it takes about 3 hours to normalize
5) No bright lights- TVs computers, smartphones etc.. for 1 hour prior to bed. relaxing activities only.
6) HIDE THE CLOCK. A study about 10 years ago said removing a clock was the single best aide for insomnia, because people check it every 10 minutes and get frustrated
7) If awake after 20 minutes or so get up and read in mild light until sleepy
8) avoid stress- write things bugging you down prior to going to bed and say "I'll review you in the AM."
9 NO CAFFEINE 8 hours before bed. NO ALCOHOL as a sleep aide, and PLEASE AVOID SLEEPING PILLS AS MUCH AS POSSIBLE!!!! Alcohol may make you fall asleep, but it fragments sleep and you will wake up quickly and groggy. Sleeping pills have VERY quick tolerance and then causes incredible rebound insomnia. my rule for ALL my patients. NEVER more than twice a week. And with Ambien NEVER more then 5mg per night.

Insomnia is also divided as trouble falling asleep or staying asleep. From a psychologic standpoint, anxiety usually causes trouble falling asleep, depression causes trouble staying asleep and getting back to sleep.

And now of course chronic illness throws a monkey wrench into everything. the wonders of IBD can certainly cause awakenings, discomfort, anxiety. And then of course meds- especially any steroid. However, any med can muck with our physiology in odd ways, so in theory ANY med can cause insomnia. TALK to your doctor. Change time of day of when you take meds. Change you meds. With IBD it's hard to know what may be causing the insomnia.

The best advice I can give is
1) Relax- everyone goes through very bad sleep from time to time
2) Get off the Sleeping pills. Wean down to a small dose and then on a night where you have nothing to do the next day (weekend? ) quit. You will be up all night in withdrawl, but then after that you will recover.
3) exercise daily in the morning
4) Change meds up
5) Treat underlying problems. Get labs to rule out other conditions
6) consider seeing a psychologist. Sleep disorders are so common now, it's half of what they see.
7) consider a SHORT early afternoon nap if possible (20-30 min.) we have a natural dip in our circadian rhythm in the early afternoon. A short nap then can actually help maintain our natural circadian rhythm.

Good luck.

From personal experience I found that the more I thought about it the worse it got. I would like in bed and the worry and expectation of not being able to sleep kept me awake.

Everyone has made some excellent points, but I think you need to find out what makes you feel tired. For me, whenever I read in bed it makes me sleepy and I tend to be able to drop off. But no sleep is the worst thing and makes a lot of normal activities seem dreadful. I hope you can resolve this and get some sleep soon x

I've always suffered from insomnia, though if anything it's got better as I've got older. I'm not sure it's anything to do with IBD; maybe it's the other way around and people with insomnia are more likely to develop IBD.

I like the "hide the clock" idea. I consciously try not to look at the clock when I wake up in the middle of the night now.

I have the odd night where I'm awake half the night, but what happens much more often is I fall asleep fine, but wake up too early: typically 5am - 6am. Perhaps I should try to make that a routine; I'd probably get more done in the day if I got up that early.

I don't know... there were only ever two times in my life when I had any difficulty with sleeping. The very first time it ever showed up was when my wife and I divorced. She had custody initially... and although I 'knew' my kids were OK.. I just couldn't sleep. On their weekend visits I would literally crash because for the previous 5, 6 nights I was only getting an hour or two a night. When I got custody, problem went away. And only reared it's ugly head again 'this' time... not in any of my prior bouts with this damned disease.

I've seen me bone tired... exhausted.. yawning non stop... my body aching for sleep.. and then my mind goes hyper active. I'll think about things from my past (pleasant or unpleasant... just like a film strip of disassociated memories.. no connection between them, each other, or my current circumstances) or I'll worry/stress about future things (although I 'know' worrying is no solution, and I try to avoid getting into that no win loop) or I'll get an ear worm... which just plays over and over.. ANYWAY.. those are my typical scenarios with insomnia.. and so far, I haven't found a reliable work around AND I can't understand WHY it is happening this time... when it hasn't happened in my prior attacks.

I think Ambien (zopiclone) is the worst drug on the market. It causes rebound insomnia that is terrible to get over, and doctors in Canada are prescribing it less and less as patient studies are showing it to be a highly abused drug. I found it easier to quit Oxy than Ambien!

I have suffered from insomnia for 15 more years than I have had Crohn's. My best advice is no stimulants in your diet at all, exercise (whatever you can handle) 5-6 hrs before bed, good sleep hygiene, and a little bit of pot if your brain is spinning.

Helpful herbs and supplements:

5-htp
Valerian
Hops
Passiflora
oatstraw (tea)
Scullcap

My fav is skullcap to quiet a restless mind, with no contraindications and no sedative effects!

I can't do pot (medical marijuana) because I'm a commercial trucker (least I was before this flare started... been off work since May) and I can't have any in my system because of spot checks. I wish I could, I hear it is great for pain. I take Zopiclone (just started). Like I've said.. if it is just pain, etc., keeping me awake, it works. If it is hyper active mind, it doesn't. I'm not supposed to take it for more than 4 weeks, so I'm running out of options.

Probably not a good idea, but I have slept well the last 2 nights due to having to take benadryl the past 2 nights due to hives! But icky hangover and tiredness during the days from it. I take 1mg of xanax at bedtime, and also am allowed to take Restoril, which is a long acting form of xanax, in addition. Good luck- I feel for you!

I would echo all the good advice and add wear an eye mask! Makes all the difference to me when the room is totally dark.

The more you try and force yourswlf to sleep the less likely you are to fall asleep.

I too have sleep issues but improved when my attitude to sleep changed.

I dont go to bed if im not tired.. thats the worst thing too do. and i say to myself 'If i fall asleep i fall asleep.. if i dont i dont'

Usually that helps.

With a lot of sleep meds you build up tolerance very quickly - they don't keep having the same effect. They should only be prescribed if it's known the insomnia is going to be short-term - my GP gave me the example of someone who can't sleep due to going through a stressful situation where it's known it won't last. These meds are the ones classed as benzodiapines. (I think?)

When I first took prednisone, it gave me awful insomnia. I tried every over-the-counter type of sleeping pill I could find, plus a couple of prescription ones (but not benzodiapines), one of which had the opposite effect on me than it was supposed to, and I couldn't sleep at all.

Then my GP prescribed me Amitriptyline, first at a low dose, then increased it, and it worked like magic. I've been taking it for a couple of years now, and it still works.

Before taking prednisone I'd not often had much trouble sleeping before. I carried on taking Amitriptyline even when I came off prednisone though, because it works well for me as an anti-depressant. The only times Amitriptyline hasn't let me sleep have been a few nights when I've been extremely sick in hospital following surgeries, especially when in withdrawal for strong opiates following surgeries. Other than that, it pretty much guarantees me a very deep sleep, the deepness depending on how much I take.

When I was on prednisone, the tips on sleep "hygiene" never helped me.

When not on prednisone, or on prednisone plus Amitriptyline, I never need them. Light and noise don't bother me, I sleep through anything, and I can drink a lot of Coke with caffeine and fall asleep just fine.

But there are some things I do, I could probably sleep without them, but they seem to enhance sleep at night and help me feel more awake during the day: I always make myself get up early in the morning; I'm naturally a morning person anyway. I often nap in the afternoon, occasionally in the morning, but I don't let myself nap in the evening when it's too close to bedtime. I do find I'm much more ready to fall asleep when I'm a bit cold, I keep the room cool at night and wear light nightclothes. I don't go to bed during the day - daytime naps I have in a chair. And I always feel sleepy after eating (after lunch I desperately need my afternoon nap), so I eat supper last thing before going to bed. When I time it right, the Amitriptyline kicks in, sleepiness comes on following supper, I try to think of something calming and it all comes together and I fall right asleep.

Kev said:

I can't do pot (medical marijuana) because I'm a commercial trucker (least I was before this flare started... been off work since May) and I can't have any in my system because of spot checks. I wish I could, I hear it is great for pain. I take Zopiclone (just started). Like I've said.. if it is just pain, etc., keeping me awake, it works. If it is hyper active mind, it doesn't. I'm not supposed to take it for more than 4 weeks, so I'm running out of options.

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Hi Kevin,

I started on 3.75 mg of Zopiclone in February 2011 for insomnia due to job loss.
Fast forward to January 2014 and I was taking four 7.5 mg per night and getting 3 hours sleep. Doctor shopping for extra pills. So against the advice of pharmist and doctor to taper off I stopped cold turkey and got 8 hours sleep that night.
I would not advise anyone to take this medication beyond 4 weeks.
BTW the docs will try to put you on various anti-depressants whose "off-label" use is for insomnia. These did not work for me at all.
Having said that, you should try whatever works to get some sleep.

Norman1978 said:

Hi Kevin,

I started on 3.75 mg of Zopiclone in February 2011 for insomnia due to job loss.
Fast forward to January 2014 and I was taking four 7.5 mg per night and getting 3 hours sleep. Doctor shopping for extra pills. So against the advice of pharmist and doctor to taper off I stopped cold turkey and got 8 hours sleep that night.
I would not advise anyone to take this medication beyond 4 weeks.
BTW the docs will try to put you on various anti-depressants whose "off-label" use is for insomnia. These did not work for me at all.
Having said that, you should try whatever works to get some sleep.

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It does seem to vary a lot from person to person - it's an antidepressant that I talked about in my post above. I've read posts where people feel offended when their doctor offers them antidepressants when they ask for something to help them sleep, as they assume that the doctor thinks they're depressed, but some antidepressants really can help with sleep!

I agree with the warning about addictive meds - don't take anything addictive if you can help it.

We are organisms that function on rhythms. Our bodies respond to habits. Most of us sleep on pillows. If I took away your pillow tonight you would have trouble falling asleep because I'm removing your sleep habit. If you set an alarm at 2am 7 nights in a row and get up and eat burger and hot dog, I guarantee that on night 8 if you don't set the alarm, you will still wake up at 2am hungry.

Your body will adjust very quickly to taking a pill to induce sleep. Sure, there are times in life, medications (steroids etc...) that interfere will quality and quantity of sleep, and for those very BRIEF times sleep aides can help. But BE VERY CAREFUL. Dependance and tolerance on sleeping pills is nearing epidemic numbers here in the US. In most cases sleep will eventually happen. Even if you happen to lay awake all night one night, you will likely function just fine the next day. Circadian rhythm kicks in, a morning coffee helps. The body will eventually shut itself down and you will konk out the next night. Take it from somone who has done many many 36 hours shifts without ever killing anyone or crashing my car.

Worse than missing sleep is the FEAR of missing sleep. The fear and anxiety make it a self perpetuating problem. If you can't sleep because of depression, anxiety, or pain- get those treated. Treat the problem, not the symptom.

So except in the rare setting (time zone travel, steroid use, acute grief) PLEASE avoid sleeping pills. They are now being linked to everything from amnesia, dementia, other addictions, obessive behaviors, and possibly other chronic medical conditions.

Yeah, I don't want to become reliant on any med for sleep. I've re-arranged my eating habits... since I'm not working at the moment, it isn't a problem. The whole 'breakfast like a prince, sup like a pauper' routine... and at an earlier timeframe (when I was working I typically wouldn't get home until after 7 PM)... so I was used to late suppers. And, in trying to avoid relying on public washrooms, I would eat very little up until my evening meal. So, reversing the regimen my body was accustomed to, the one that I had adopted to deal with having to work... now means that my 'worst' pain levels are behind me at bed time. Which helps... and, the 'overactive' brain thing.. seems to be leveling off. Pure conjecture on my part, but I think some of it was pain related, or pain induced. I 'think' the body responds to pain by releasing adrenaline??? Fight or flight scenario. And an adrenaline rush.... well, if my memory serves correctly... that's the closest I can come to in describing my sleepless nights.

Your body will adjust very quickly to taking a pill to induce sleep. Sure, there are times in life, medications (steroids etc...) that interfere will quality and quantity of sleep, and for those very BRIEF times sleep aides can help. But BE VERY CAREFUL. Dependance and tolerance on sleeping pills is nearing epidemic numbers here in the US. In most cases sleep will eventually happen. Even if you happen to lay awake all night one night, you will likely function just fine the next day. Circadian rhythm kicks in, a morning coffee helps. The body will eventually shut itself down and you will konk out the next night. Take it from somone who has done many many 36 hours shifts without ever killing anyone or crashing my car.

Worse than missing sleep is the FEAR of missing sleep. The fear and anxiety make it a self perpetuating problem. If you can't sleep because of depression, anxiety, or pain- get those treated. Treat the problem, not the symptom.

So except in the rare setting (time zone travel, steroid use, acute grief) PLEASE avoid sleeping pills. They are now being linked to everything from amnesia, dementia, other addictions, obessive behaviors, and possibly other chronic medical conditions.

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I can't function at all on little sleep. I can't even think straight unless I've had at least seven or eight hours. Even when I've had a good night's sleep, after lunch I start being unable to concentrate and even feeling a bit more depressed than usual, and I know that means I need a nap, and after an hour or so of sleep I wake up feeling so much better. (Part of this nap routine is the habit element you talk about, but mostly I just really do need sleep; eating often leaves me sleepy, and my energy just seems to vanish at this time of day). I know we've posted about sleep meds and addiction before, but I still feel the same way about it: I've been taking amitriptyline for years, originally for sleep, now for other reasons, but it still has the effect of helping sleep. Not every sleep med is addictive. (Btw in case you're wondering, I had an excessive need for sleep and daytime naps long before I started taking amitriptyline, or any other med. It just seems to be part of being ill for me.)

Also, pain, anxiety, and depression sometimes just can't be treated.

UnXmas- you bring up a couple of important points- Illness, and chronic illness especially does throw a monkey wrench into all of this. Also, naps actually can HELP with insomnia by preventing overtiredness which can paradoxically sometimes throw off sleep by throwing circadian rhythm completely out of whack (jet lag for instance.) Just keeps naps short.

Amitrptyline is actually one of the more tolerated meds when it comes to sleep- we usually avoid it because of the anticholinergic effects (dry mouth, urinary retention.)
Most people worry about addiction- I don't. I worry about dependence. Sleep is a natural phenomenon that can, should, and truth be told, will eventually occur naturally. Yes, illness, steroids, other things can certainly interfere with it. The problem is the longer one is on meds, the harder it is to come off of them. Also, studies have shown the quality of sleep (measured by EEG, immune function- not subjectively) is better when not pharmacologically induced. What happens if you go on a trip and forget them? run out? Or if you develop tolerance (though I admit not as likely with elavil as with the nasty sedatives like Ambien?)

I understand in some cases the are necessary. I am simply advocating avoiding chemical manipualation of natural occuring physiologic processes as much as possible. You certainly have a good reason for being on them. But most of the patients I see are up at night worried about their boss being mad at them, or their boyfriends cheating on them- and in those cases I urge them to deal with underlying causes, not to chemically trick their brains.

Yes, I'm probably not a typical case. I worried a lot at first that I'd develop tolerance to amitriptyline - I know from taking codeine exactly what that's like - but that hasn't happened. I did find, though, that the side effects I had at first mostly went away after the first few weeks. Perhaps I was just extremely lucky to find a medication that happened to be very well suited to me?

I know that if amitriptyline is suddenly stopped some withdrawal symptoms may occur, so if I did for some reason find myself without it for a night, I know I may well have a very unpleasant night.

I actually sleep a lot whether i like it or not. The past 10+ years of this crohns stuff sapped much of my mojo out of me. The odd times that I can't sleep no matter what, I will pop a gravol (anti-nausea med). It doesn't happen too often, but the gravol does work for me.