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05-25-2011, 10:13 AM   #1
lulu2
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Waking up at night

Ok, so I'm looking for a general consensus really.... to my knowledge if you're regularly woken up at night with pain and diarrhoea it's due to an organic cause - ie IBD (or even something worse) but NOT IBS.....

Have you guys found this to be the case?

I'm regularly woken up with my crohn's symptoms, the pain wakes me first then I have to go to the toilet and I can then be up all night.... does anyone else get this?

I ask because my GI told me its a fairly big pointer to IBD (and he indeed later diagnosed crohns) but on one of my recent admissions when going thru my symptoms with another Dr he said it can happen in IBS too.... now I had abnormal bloods (but an ok CT) so he said he was still pretty convinced this is crohns, and his IBS comment was just a throw away one, but it DID confuse me and I'm curious....

So what do people think?

xxx
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05-25-2011, 10:37 AM   #2
Sha0913
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This definitley happens to me all of the time especially when I'm flaring. nothing really helps it and it does come and go but when I'm flaring and not feeling well I become a definite insomniac.
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05-25-2011, 10:59 AM   #3
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When I first went to the doc (GP) because of frequent BMs, he asked if I woke up during the night to go. When I said yes, he said it's probably IBD not IBS because IBS is usually connected to stimulations from your nervous system and is not active when you are asleep. I was later diagnosed with crohns.
05-25-2011, 11:07 AM   #4
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Yes, regularly wake up to go to the bathroom if flaring.
05-25-2011, 11:10 AM   #5
polynesian
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Hi lulu2.
I have not been diagnosed yet, I'm waiting for an appointment for a colonoscopy.
Yes I wake up during the night to go. When I'm flaring I can end up going all night. In a flare I can go 20 to 30 times a day including sleeping hours. If by chance I sleep through the night I will usually wake up in the morning with my abdomen cramping and then need to go right away. It's crazy!!!!! One of the questions I plan on asking the Gi Doc. is why this effects me through the night.
Hang in there.
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05-25-2011, 11:14 AM   #6
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i wake to go to the toilet 2-3 times a night. but not too sure if it's the crohn's or my overnight feed. (get fed through NG tube at night)...
05-25-2011, 11:31 AM   #7
handle
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Yeah definitely and IBD thing. Normally during sleep the rythmic pulsing of the intestines slows right down, so we're not disturbed. With inflamed, irritated bowels the gut unfortunately can't rest, and keeps pulsing away...one of the wonderful side effects that keeps us from a peaceful night's sleep. And, even if it does slow down somewhat, if there are narrow areas then pressure builds up and wakes us. This is unlikely with IBS, since the intestines are still able to follow the normal pattern of slowing down while sleeping, as there is no organic disease or narrowing.
We have to sleep whenever we can!
05-25-2011, 03:52 PM   #8
StarGirrrrl
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Yes it's much, much more likely to be down to IBD, very rare for it to happen with IBS, if it even does.

IBS is what Drs like to say when they are not sure what is happening!
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05-25-2011, 07:22 PM   #9
soretum
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I'm not yet diagnosed, colonoscopy in 2 weeks but yup yup yup, I haven't had a full nights sleep in 5 months....and the same as you describe, the cramp wakes me and I have to get up to the loo
05-26-2011, 05:36 AM   #10
Welsh-bird
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Nightime loo trips is a big NO NO with my gastro. She says its when my colon was no longer responding to treatment and was a big red flag signal that thing's were deteriorating. My colon's in the bin now, so I only need to go to empty my bag at night...that doesn't seem to bother her half as much! lol
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05-26-2011, 05:55 AM   #11
bruscar
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Used tobe up st worst 16 time a night and now i have had blah blah surgery etc etc i am up about three times a night but as far as a full nights sleep !

Pull the other one . . . . . . not sincemy last general anaesthetic !!

Its part of the bullsh*t production of "a crappers life"

Staring all of us !!

Good luck and good health
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05-26-2011, 06:31 AM   #12
lulu2
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Ok so the vote seems to be unanimous (I've never had to spell that before, is that right??)..... nocturnal pain and diarrhoea = IBD.

That's a relief cos when he mentioned IBS, even when he said he felt it was crohns still I was worried.... in my mind IBS is worse cos even tho crohn's is nasty and horrible, it is manageable and treatable.... but to be diagnosed with IBS would just mean living with this pain and misery and there's very little that can be done and it's not really taken seriously by GIs........

xxx
05-26-2011, 07:35 AM   #13
Astra
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Lulu

Codeine Phosphate 30mg can help with this, they gave it to me in hospital last year. It stopped the D right away, and I never woke up with pain or diarrhea. It makes you sleepy and is only on prescription. Not to be taken for long term tho, it's addictive and can cause constipation.
But it will stop the spasms and diarrhea for now whilst you get some rest.
I only take it in emergencies, mention it to your doc. Failing that, you can buy co codamol at the chemist but it's only got 8mg of codeine in it.
xxx
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05-26-2011, 07:40 AM   #14
lulu2
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Hi Astra

Thanks for the advice, I was actually aware of codeine's anti-diarrhoeal properties, but since my recent bowel obstruction i'm avoiding both codeine and loperamide for a while (I took them both [ok the loperamide in excess] when i began flaring at 3.30am the night before an exam....... and wound up in hospital obstructed, so i'm being very very careful with antidiarrhoeals now.

I'll just cope with the flaring until i see my GI again in a few weeks I think. I'm on a course of pred atm so hopefully it will settle soon enough.......

:-) Hope you're well!

xxxx
05-26-2011, 07:44 AM   #15
Misty-Eyed
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When my crohn's is bad, I always used to wake up with pain, and it was the pain that made me want to go to the toilet. Sometimes I'd try and ignore it and wait for it to pass, but it never did unless I got up.

I'd say that it was certainly Crohn's. Especially if the pain you're experiencing is bad. Did they not diagnose you from histological results?
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05-26-2011, 08:12 AM   #16
lulu2
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No I'm diagnosed from radiology (SBFT), blood results and clinical suspicion (signs and symptoms); they couldnt do a full colonoscopy it was too tight at the splenic flexure (so only looked at 1/3 of my large bowel), that 1/3 of my bowel is normal but from other tests they reckon its in my small bowel, terminal ileum and possibly the right side of my large bowel.... even the consultant (different to my regular one) who mentioned IBS said he still believes it to be crohns.... but just the mention of IBS worried me! Silly i know.

Yeah the pain at night is SEVERE, 10/10 agony, but then when i get it in the day thats the same, pain that makes me cry and often i vomit. But I'm just being silly, the consultants (esp my own GI) are convinced this is crohns; I'm just being paranoid cos a diagnosis of IBS in my mind is WORSE!! I know myself that my symptoms and signs aren't IBS and certainly not my test results......

xxxx
05-26-2011, 08:42 AM   #17
Astra
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Hiya Lulu

Thanks I'm very well, doing good

Regarding the Codeine Phosphate, I was given that in hospital for a week, and I too was blocked! It worked really well pain wise too.
xxx
05-26-2011, 09:16 AM   #18
Misty-Eyed
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That CERTAINLY doesn't sound like IBS to me. I think you're just worried that because you don't have a fully conclusive diagnosis that you're worried they'll change their minds. I don't think they'd be that stupid to though.

I was going to say that I'm surprised they've not done a virtual colonoscopy, but I guess you can't get biopsies that way either, and I guess if the SBFT was enough, there'd be no need..
05-26-2011, 09:24 AM   #19
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Hey Lulu,
It would be far better to be diagnosed with IBS !!! Way less pain and no physical destruction of the bowels. And, there are actually many treatments for it. You say you have 10/10 pain, that's scary. Hope you get the best help possible for your IBD.
all the best.
05-26-2011, 09:54 AM   #20
lulu2
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Hey Misty; yeah I think you're right, I think Im just worried cos I know histological diagnosis is gold standard..... but the imaging HAS been enough and my consultant is confident the diagnosis is correct.... I guess just for me having the knowledge i do i can't help worrying.... but I know this is IBD, I have nocturnal symptoms, I pass blood, tons of mucous, 10/10 pain (with vomiting often) and i have tests abnormal enough to diagnose crohns, I should just stop worrying and trust my docs know what theyre doing.... plus my GI is quite old, nearing retirement so his experience is so vast he knows what he's doing!

Handle.... I say an IBS diagnosis would be worse only because it would mean having to live with the HORRIBLE 10/10 pain and very little could be done to fix it.... and I'm not exaggarting that pain, when it happens I often cry and I think that if I knew it were to last at that level for loooong time I'd much rather die!! Fortunately the first movement of a flare is the 10/10 one, then the pain settles to more like 7 or 8/10 and although very very bad is more manageable and doesnt make me want to die! But at least with IBD things can (and have) been done to help the pain and symptoms, if it were diagnosed as IBS there's not a lot can be done......

As it happens I'm getting good treatment for my crohns, Im on pentasa and pred currently and Im hoping its gonna settle v soon.

Hope you're well!

xxx
05-26-2011, 10:29 AM   #21
lulu2
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Oh there is no sleeping thru this pain - ive tried whenever its woken me up before..... it's the most severe pain EVER, and sleeping just doesnt happen! I can't even bear to be touched when its happening, not even on my arm or leg or anywhere, not cos my arm hurts, it just hurts so bad i dont want to be touched! My partner had a real hard time dealing with that in the early days.... now he's used to it. Whilst Im flaring, even when the pain isnt as severe I cant bear my tummy to be touched at all!

xxxx
05-26-2011, 10:38 AM   #22
handle
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Do you have any painkillers? I've found Digesic useful, and also Tramadol, sparingly. That pain can be quite destructive and no-one should have to live with that...
all the best.
05-26-2011, 10:46 AM   #23
lulu2
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Nothing but morphine even close on touches the pain (IV morphine) when its that bad and I have wound up in hospital on occassions when its lasted longer than normal.... but usually the 10/10 is just that first flaring motion as i said.... so lasts about an hour maybe, which is a long time but I know it will usually come to an end, so I tend to cry, shake and vomit till its over.

I've tried paracetamol (does nothing), NSAIDs (been told not to take these with crohns, which makes sense), codeine (which resulted in a bowel obstruction when i took it with loperamide, so now I avoid both cos it was only a few weeks ago and that was 10/10 pain that lasted DAYS, I couldnt move I was so ill, just lay v still in a hospital bed with morphine taking the edge off a little) and tramadol (which did nothing).........

It's ok, I mean its bad and i want it to go away, but I think the best way of it going it away is to just bring the crohns under control...... hoping the pred and pentasa are gonna do that!!

Thanks for ur help tho.... btw what's digesic? Brand name?

xxx
05-26-2011, 11:33 AM   #24
handle
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Yeah it's a brand name for Dextropropoxyphene. Codeine is the worst thing to give for obstructive illness, as is loperamide (slows the peristalsis). Ouch!
Maybe Endone (similar to morphine in pill form) and temporary liquid nutrition would work for you. I know the pain you are experiencing all too well, and it's awful. You are right that it will get better as you get things under control but in the mean time I really hope you get some pain management options. You may be aware that intense pain slows the healing process, and can cause other issues. The medical profession has made great leaps in the last several years in understanding pain. When I was first in hospital twenty years back they were naive about Crohn's pain. No sensible medic now believes that kind of pain to be of any use.
all the best to you.
05-26-2011, 11:45 AM   #25
lulu2
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Well currently I'm a soft/ liquid diet..... soup and water essentially, man I'm so hungry!! But its keeping things fairly calm. Ive lost so much weight tho, dropped a dress size in 3 weeks!!

I'm really reluctant to have opioids atm for 2 reasons - 1 is the recent obstruction - I NEVER want to go thru that again and the second is I'm quite opiate sensitive, they tend to make me dizzy and a bit sick and I'm hoping to get back to normal life next week; I've just finished my degree and I've got a shadowing post ready for starting my job in august and I really need to learn the day to day job itself or come august I'm gonna be TERRIFIED when I'm alone with it!!! lol

All the best to you too, thanks so much for your kindness! It's really appreciated, I'm really not meaning to keep throwing your good and obv well informed advice back at you, it is very appreciated; I'm just trying to be really careful with myself atm, I was only diagnosed back in sept and this is the worst flare Ive had; despite having a heart condition and malaria in the past, i think this past 3 weeks is the sickest i've ever been - I've been in hospital twice! The second time i self discharged cos i just couldnt bear it any longer!! I'm just trying to find my level and I've had a bit of a scare at how sick this disease can make me!

xxxx
05-26-2011, 12:23 PM   #26
handle
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It sounds like you are doing everything correctly. It is a real learning curve finding out what is right for your self, which will be different to everyone else. And you are clearly a fast learner. Have you added some nutritonally complete drinks to your diet?
Yeah each painkiller has its own drawbacks. I also don't use opioids because of their tendency to slow the bowels (though not so much an issue with the liquid nutrition), and I agree that a sharp mind runs better without them! There are also muscle relaxants like Buscopan (no side effects really) and hot water bottles(!) that can be useful. You are quite right to take it slow and careful.
I hope things go smoothly for you. I'm always sorry when people have to go through this crap (literally.) Good luck with the new job - I think you will be fine with it. Take things as easy as you can.
05-26-2011, 12:32 PM   #27
lulu2
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Fast learner? Well I'm a bit of a cheater, just qualified as a Dr so I have a head start! Lol. I've looked at some of the drinks like ensure.... not sure I've reached a point of needing those yet, I've lost a lot of weight, but my weight is still healthy, I'm certainly not underweight yet, when it starts getting to that point I'll look into the drinks, hopefully before I need them I'll be back on solid food....

I did also try buscopan.... didnt really do much. But I DO love hot water bottles.... they don't do much for the pain, but they're really soothing when I'm sick (I carried one to an exam a few weeks ago when i had my obstruction [obv before i knew it was an obstruction, i ended up in hospital that night]).

I'm the same as you, this is a horrible disease for people to have to suffer and I want to help others as much as you do! You're advice has been sound and your kindness really appreciated! Thank you. :-)

Hope you're well!

xxxxx
05-26-2011, 10:12 PM   #28
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Hello lulu2
I have those terribly painful nights quite often, i would rate the pain at least an 8 or 9. In fact I was up last night pacing in the back garden with the dog as it didnt matter what I did, the pain just would not subside. It sounds crazy but i dont know what to do with myself when I get like this and pacing seems to be a little therapeutic. I take endone and it generally helps to relax me after some time, but last night I could have screamed the neighbourhood down. Im sure the dog thinks Im crazy wandering around through the night but she senses my discomfort and does what she can to help. Since being diagnosed about 2 and a half yrs ago, nights have been horrific for me. Mornings are just as bad. And then you have to try to face the following day doing all the normal stuff whilst you are completely knackered and still quite sensitive from the night before. I unfortunately have had to cancel a course this morning to help further my career, and with one set back after another, you wonder just how normal your life is going to be. Heated wheat bags help me, and lots of love and support. I too cant stand to be touched or even spoken to when I feel like this, it must be so hard for our other halves to sit back and watch at times. I think the nightmare thing about it all is that its such a catch 22 position to be in. You dont want it to take over and you want to be positive and you know if you stress too much you are going to make your symptoms go haywire but then on the same hand you are suffering and you are fed up and tired. I have come to the realisation that at the moment my life is what it is and I can still do some things but I cant do it at the same pace as everyone else. I am going to have days like today where I have to cancel something and just have some chill time to try to re-energise. Being completely honest with your doc about how bad you are suffering is key to getting anything done. At best its a slow process but suffering this kind of pain isnt how a crohns sufferers life has to be, or so im told! Trying to explain your symptoms really only comes down to two things, how YOU get the message across, and then how its interpreted. A diary works a treat. The other issue is that with a lot of medications unfortunately they take a while to start doing anything to help until they have been in your system for some time. Im not glad for your pain and suffering but at the most, am going to be thinking of you when Im experiencing another night of grief and know that I am not alone. Hope this helps you too, as best it can anyways. Take care
05-26-2011, 11:50 PM   #29
butterfly
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I have those usually, although they are not excruciatingly painful, and after I have the bowl movement I feel fine and am able easily to fall back asleep. Lucky me...

I hope you feel better soon, though, and are one day able to get a full nights sleep again.

Take care.

Last edited by butterfly; 05-26-2011 at 11:52 PM. Reason: adding something
05-27-2011, 03:53 AM   #30
lulu2
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Hey snookums; you certainly were not alone last night, 2.30 am prompt that ever so terrible cramping awoke me.... a very painful BO later and I was still in agony! I get cold easily at night so I doubt pacing would help me; would just make me very cold on top of the pain.... but I lay perfectly still on my back (horrible cos I tend to sleep on my tummy best), everytime I tried to roll onto my tummy or even side it hurt too much so I slept very little.

As much as it's horrible that we all suffer, it's also good to know we're not alone in this and next time I get woken from sleep by this again I shall also think of you and know we're not alone!!

I had to explain to my partner what that severe type of pain is like - he's never been in excrutiating pain before and at first couldnt understand why I wouldnt even let him stroke my hair to comfort me.... I cant explain it tho, cos my hair obv doesnt hurt, I just cannot bear to be touched (and being spoken to and expected to answer questions is also very difficult too).

Still hurting a fair bit this morning, only just taken my 3rd dose of pred tho - anyone know how long this stuff takes to kick in? It's been a 3 week flare now.... which is my longest to date and I really want to get to back to shadowing next week and I would like something that resembles fun this weekend.....

xxxx
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