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Posted 11/16/2014 7:05 PM (GMT 0)
I'm just trying to get through the worst flare of my life. I've been on pred for about a month and a half now with less than stellar results.

If I'm judging my flare only from my experience during the day, then I wouldn't be doing all that bad. I go a couple to a few times on a good day to occasionally, 6 or 7 times on a bad day and aside from a little fatigue caused by sleepless nights, I'm not doing too bad.

But seriously, it almost feels like the minute my head hits the pillow, my stomach becomes "active." I have to get up close to ten times a night, and then when I wake up in the morning I just feel awful. Then I kind of ease into the day, by about 12:00 I'm feeling alright, and then by the late evening, sometimes I even forget I'm flaring at all and feel so good that it's hard to imagine I could feel the way I will in a couple hours.

Urgh... maybe I'll just try sleeping sitting up tonight. I seriously feel like there is something about lying down that exacerbates things.

Of course, it could be all types of things. I take the prednisone in the morning, so maybe by the evening the inflammation is returning. It could be that all the food I've eaten throughout the day is just hitting an unhealed portion of my colon and it's reacting.

I don't know though, something tells me it more has to do with being prone. And it seems feasible, gravity doesn't somehow magically lose it's properties once you enter the large intestine. It will obviously change how things are sitting in there, if only due to gravity.

What does everyone else think?

Post Edited (JR112) : 11/16/2014 12:08:49 PM (GMT-7)

Posted 11/16/2014 7:45 PM (GMT 0)
Might be related to diet and eating times.
Posted 11/16/2014 8:29 PM (GMT 0)
Yeah, that was what I suspected initially too. But my meal times can be very inconsistent, and sometimes consist of very little, yet it seems like the severity of my nighttime symptoms don't correlate. Plus, half the time it's less stool and more of a mucusy watery discharge. Literally a couple hours after I lay down, my symptoms start. This is despite the fact that when I go to bed every night can vary by quite a bit.

It's not a change in my diet either, because I have changed my diet drastically since experiencing the nighttime symptoms and there is no change in severity.

But I don't know, I still don't think I can rule diet and timing out. It just feels like there is more to it than that.

Post Edited (JR112) : 11/16/2014 1:35:14 PM (GMT-7)

Posted 11/16/2014 9:21 PM (GMT 0)
Hey man -

I had this issue as well. Would have to abruptly get up and run to the bathroom as soon as I started to fall asleep. It was mainly just gas followed by mucus discharge. What helped was taking something that boosted endorphins (could be mj, white chocolate, etc).

For me, it was heated milk + sugar + cocoa butter before bedtime and it would knock me out for 6 hours. LDN might also help.

Let me know if this helps.

Best.

Guardian7
Posted 11/17/2014 5:28 AM (GMT 0)
What comes to mind is what you're eating and when you're eating it. Do not eat or drink anything 3 hours before you head to bed. Also, it's not uncommon for colitis symptoms to act up if you lay down on your stomach or your left or right side. Try sleeping on your back. Other than that, if this persists, see a doctor and see what the options are. I know that I need to go to sleep right away for me not to get up and run to the bathroom, so consider reading in a sitting position until you get sleepy then laying down and snoozing right away. If your colon is so inflamed that you can't sleep, you need to take care of that inflammation asap before the situation deteriorates even further.

I know how you feel, I'm in your shoes now, I upped my medicine, and I had a few hours of sleep yesterday, it was amazing, I had a dream about something and couldn't tell it was a dream because it feels like ages since REM sleep and I met.
Posted 11/17/2014 8:02 AM (GMT 0)
I had my ostomy surgery after diagnosed with Chron's. I've been strict with my diet as advise by my doctor. I would suggest, avoid eating solid foods because it can lead to intestinal blockage. I always have almond, oats, cooked fish or chicken and no to solid foods like peanuts.
Posted 11/17/2014 11:39 AM (GMT 0)
I'm in the middle of an awful flare, and my problems are unquestionably worse when I lie down. I have a lot more gas and my BMs are a lot more liquidy. It doesn't seem to matter what I eat or when, or when I lie down or for how long (for the night, or for a short nap during the day).

I'm also on prednisone right now (40mg/day), and that isn't helping me sleep either.

Don't know what to say except I can sympathize with you!
Posted 11/17/2014 11:46 AM (GMT 0)
I've been having a similar problem lately too - as soon as I get into bed, I'm up and down to the bathroom.
I found what helps me slightly is sleeping on my back, with two pillows under my knees/thighs to elevate my legs up. The pillows make it more comfortable for me, and I find it makes me less likely to roll over during the night. If I lie on either side, I instantly get pain and have to go to the bathroom. A couple of nights ago, I was woken from the pain & urge, because I did actually roll over during the night and was on my right side - was up and down to bathroom for over two hours then because of that.
Posted 11/17/2014 5:06 PM (GMT 0)
It's not a gravity thing, whether you're standing, laying or sitting, the bowels do what they do and when you have an IBD they are messed up and confused so again it doesn't matter if you're sitting, standing or laying the bowels are always active because that's just the ugly nature of the ugly IBD beast.
This is why I use mj before bed, it's the only thing that helps calm and stop BM's for me, and not just at night, when hubby takes me out for dinner I smoke so that I can enjoy a public dinner without getting up to use to toilet multiple times.
Posted 11/17/2014 6:20 PM (GMT 0)

Guardian7 said...

For me, it was heated milk + sugar + cocoa butter before bedtime and it would knock me out for 6 hours.

MILK !!! SUGAR !! BUTTER !!!

R.I.P.

i definitely don't recommend this, @JR112 did you try rectal meds ? i.e. steroid enemas/suppositories or mesalamines ?
Posted 11/17/2014 7:58 PM (GMT 0)

pb4 said...
It's not a gravity thing, whether you're standing, laying or sitting, the bowels do what they do and when you have an IBD they are messed up and confused so again it doesn't matter if you're sitting, standing or laying the bowels are always active because that's just the ugly nature of the ugly IBD beast.
This is why I use mj before bed, it's the only thing that helps calm and stop BM's for me, and not just at night, when hubby takes me out for dinner I smoke so that I can enjoy a public dinner without getting up to use to toilet multiple times.


I would disagree. You can't say that unequivocally. Whatever "stuff" is sitting in your gut, especially because it's probably not formed, will sit differently due to whether your standing up or lying down. Maybe when your standing up it's more piling up on top of everything, and when your lying down it spreads over a more diffuse area. Think of canola oil in a bottle standing up vs laying down. It covers more surface area when the bottle is lying down. Whenever an inflamed colon is touched by anything, it will aggravate it, so how can you be so sure that the stool in your colon doesn't cover a more diffuse area lying vs standing, thus aggravating things?

You're right that your bowels are going to do what they are going to do, but I also think certain factors can influence how symptomatic you are, even if doesn't really affect the level of inflammation.

I know the mj trick. I do that trick all day long. Here's something interesting you might not have tried: edibles. Smoking has almost zero effect for me. I do it anyway when I'm running low on hash or I have stomach pangs, but when I eat it, it almost completely alleviates my symptoms for a space of a few hours. Plus, it's a lot more cost effective -- and lasts a whole lot longer -- if you do it right eating it vs smoking.

Problem is, I take it before bed and it takes care of me for 3 or 4 hours, but wears off when I'm asleep.

Post Edited (JR112) : 11/17/2014 1:06:20 PM (GMT-7)

Posted 11/17/2014 8:59 PM (GMT 0)
My UC is worse at night when flaring too. It can be miserable and I'm sorry for you! Sleeping on my back helps- left side is a definite no go. Other than that I have no good advice- just empathy.

Also, depending on how sick you are/dehydrated/dizzy be really careful going to the bathroom at night. I passed out once and hit my head. I was fine, but thank goodness for my sweet mom.

I asked my doctor about this once and he said that it is a common thread among his UC patients that their disease acts up at night. He did not give a reason or a solution other than getting the flare under control.
Posted 11/17/2014 9:47 PM (GMT 0)

JR112 said...

pb4 said...
It's not a gravity thing, whether you're standing, laying or sitting, the bowels do what they do and when you have an IBD they are messed up and confused so again it doesn't matter if you're sitting, standing or laying the bowels are always active because that's just the ugly nature of the ugly IBD beast.
This is why I use mj before bed, it's the only thing that helps calm and stop BM's for me, and not just at night, when hubby takes me out for dinner I smoke so that I can enjoy a public dinner without getting up to use to toilet multiple times.


I would disagree. You can't say that unequivocally. Whatever "stuff" is sitting in your gut, especially because it's probably not formed, will sit differently due to whether your standing up or lying down. Maybe when your standing up it's more piling up on top of everything, and when your lying down it spreads over a more diffuse area. Think of canola oil in a bottle standing up vs laying down. It covers more surface area when the bottle is lying down. Whenever an inflamed colon is touched by anything, it will aggravate it, so how can you be so sure that the stool in your colon doesn't cover a more diffuse area lying vs standing, thus aggravating things?

You're right that your bowels are going to do what they are going to do, but I also think certain factors can influence how symptomatic you are, even if doesn't really affect the level of inflammation.

I know the mj trick. I do that trick all day long. Here's something interesting you might not have tried: edibles. Smoking has almost zero effect for me. I do it anyway when I'm running low on hash or I have stomach pangs, but when I eat it, it almost completely alleviates my symptoms for a space of a few hours. Plus, it's a lot more cost effective -- and lasts a whole lot longer -- if you do it right eating it vs smoking.

Problem is, I take it before bed and it takes care of me for 3 or 4 hours, but wears off when I'm asleep.


From my experiences, whether I have D or constipation, my bowels will still affect me the same regardless if I'm laying, sitting or standing, the GI tract is a muscle and it contracts, moves things down and through and it will move them regardless what position your body is in, that alone is why gravity really doesn't play much of a roll at all. This is also how my GI explained it to me.
Posted 11/17/2014 10:23 PM (GMT 0)
I would, respectfully, still disagree. My doctor told explained to me that when food, stool, hits an area of inflammation, you are more likely to be symptomatic.

That's why the timing of when your eating your food could be a possibility for nighttime symptoms. If the food you ate at, lets say 4, hits the most inflamed portion of your colon at 12 at night, then wouldn't you say you are likely to have symptoms?

You're saying that the food,stool, mucas, whatever, hitting an inflamed colon would have no effect, because your bowel motility patterns works on an automatic subconscious basis.

Sure, the processes that govern your guts normal function work in waves that come in predictable patterns and occur in predictable time periods, but that doesn't mean that when matter hits an unhappy colon, it doesn't increase gut motility. It actually almost certainly does.

It's almost like saying if I pig out the night before, I won't experience any extra gastric distress because the bowel is going to follow the same patterns regardless of what I put in it.

Clearly, your bowel doesn't need gravity to function, hence astronauts ability to retain bowel function in space. However, it's my experience and judging from the responses here, that sitting, lying or standing can affect how symptomatic you are.

Remember, everyone is different and with this disease. What works for some doesn't works for others; what affects others in one way doesn't affect others in that same way. I have noticed many posters who share my experience and I believe there is something to it.

Anyway, good luck! Give some edibles a try. I would say if you're having luck smoking, then I wouldn't be surprised if you could get yourself in to remission with edibles. If I'm not flaring really badly, I can get myself into remission eating hash alone. They are probably the only reason I didn't end up in the hospital due to this flare.
Posted 11/18/2014 1:19 AM (GMT 0)
I'm the same. However, I'm glad it happens at night. It robs some of my sleep but I'm glad I don't realy have to worry about urgencies during the day at work.

My guest before reading this post was that I need to go more when I'm tired.
Posted 11/18/2014 1:28 AM (GMT 0)
Do you take the prednisone in divided doses or do you take 20 in the morning and 20 at night?
Posted 11/18/2014 2:56 AM (GMT 0)

JR112 said...
I would, respectfully, still disagree. My doctor told explained to me that when food, stool, hits an area of inflammation, you are more likely to be symptomatic.

That's why the timing of when your eating your food could be a possibility for nighttime symptoms. If the food you ate at, lets say 4, hits the most inflamed portion of your colon at 12 at night, then wouldn't you say you are likely to have symptoms?

You're saying that the food,stool, mucas, whatever, hitting an inflamed colon would have no effect, because your bowel motility patterns works on an automatic subconscious basis.

Sure, the processes that govern your guts normal function work in waves that come in predictable patterns and occur in predictable time periods, but that doesn't mean that when matter hits an unhappy colon, it doesn't increase gut motility. It actually almost certainly does.

It's almost like saying if I pig out the night before, I won't experience any extra gastric distress because the bowel is going to follow the same patterns regardless of what I put in it.

Clearly, your bowel doesn't need gravity to function, hence astronauts ability to retain bowel function in space. However, it's my experience and judging from the responses here, that sitting, lying or standing can affect how symptomatic you are.

Remember, everyone is different and with this disease. What works for some doesn't works for others; what affects others in one way doesn't affect others in that same way. I have noticed many posters who share my experience and I believe there is something to it.

Anyway, good luck! Give some edibles a try. I would say if you're having luck smoking, then I wouldn't be surprised if you could get yourself in to remission with edibles. If I'm not flaring really badly, I can get myself into remission eating hash alone. They are probably the only reason I didn't end up in the hospital due to this flare.

What you're failing to recognize is that many with irritable bowel syndrome can also have nocturnal BM's, which in that case does not involve inflammation...I'll stick to believing how my GI explained it to me considering I do have both IBD and IBS as well as lactose intolerance...I only just came out of my 23.5 yr long flare with my IBD since getting sick in 1991 thanks to Humira. However I'm still dealing with severe alternating C/D IBS and the mj aids with that issue as well.
Posted 11/18/2014 5:07 AM (GMT 0)
Try taking half your Pred in the morning and the other half later in the day. 3:00 was my usual time for the second dose.

This helped me feel better at night and didn't affect my sleep.

Are you taking the Pred with food?
Posted 11/18/2014 3:55 PM (GMT 0)
This is one of my biggest issues with this disease, I can be fine all day (i.e. no blood or mucus) but as soon as I go to bed I'll get up at least three times during the night. This is the time blood and mucus is most prevalent. I've delayed and spaced out meds to help combat the issue but nothing helps.

I'm scheduled to have my fifth entyvio infusion next month but it appears I'm heading for surgery because I need my life back and nothing seems to work except 40mg of prednisone which I refuse to take for the rest of my life.
Posted 11/18/2014 11:13 PM (GMT 0)
I experience the same symptoms. Crazy worse at night.

When I had a broken leg it swelled and hurt most at night. I read that it was common because of natural body rhythms and less cortisone at night. Also because there was less to distract me since I was trying to be quiet and let my husband sleep.

So perhaps it's also some rhythm cortisone thing. And I worry and stress over this whole thing. Money and messy house and side effects. And don't forget daughter-in-law.
Posted 11/19/2014 12:36 AM (GMT 0)

garylouisville said...
Might be related to diet and eating times.

I stopped eating to fast for annual exam today and I still got up many times at night.

First you run then you walk. I now walk, I probably am awakening for other reasons but take the chance to go. This seems FAR more often than during the day when I am eating. I therefore think the ileocecal valve is getting stuck open at night letting too much food rumble into the large intestine.

On my last scope I asked her to check and she said it was open which somehow seems worse when lying down at night.
Posted 11/19/2014 12:39 AM (GMT 0)

ColitisGrl said...
My UC is worse at night when flaring too. It can be miserable and I'm sorry for you! Sleeping on my back helps- left side is a definite no go. Other than that I have no good advice- just empathy.

Also, depending on how sick you are/dehydrated/dizzy be really careful going to the bathroom at night. I passed out once and hit my head. I was fine, but thank goodness for my sweet mom.

I asked my doctor about this once and he said that it is a common thread among his UC patients that their disease acts up at night. He did not give a reason or a solution other than getting the flare under control.

Hospital beds with the angle were a CLEAR improvement over lying flat at home, again there seems to be something about lying down that opens up my ileocecal valve at night.
Posted 11/19/2014 4:40 AM (GMT 0)
I tried sleeping propped up on my couch last night on my back. I had much better results. I got up three or four times instead of ten and I didn't feel nauseous and horrible for the first couple hours after I woke up.

This is definitely how I'm going to sleep until things subside. I hate sleeping on my back though. I guess you have to do what you have to do.

If I wasn't only on 20mg of pred, I'd probably try dividing it up to see if taking it closer to bedtime would make a difference.

Thanks for the advice everyone!
Posted 3/17/2018 7:32 AM (GMT 0)
Only about 4 years late to the party...

Frankly, I don’t care what any doctor tells me if I know through personal physical experience anything to the contrary.

I’m tired of being on my back every night for the last two months. That’s why I’m on here now.
It is worse at night. But in this case, forget time of day, diet, biology etc.
If I lie down flat in the middle of the day it’s the same thing. I’ve been off work longer than I care to admit and I’ve had ample time on the sofa or bed during the day. If I go to the br about twice during the day normally, all I have to do is go horizontal and all hell breaks loose.

Gravity does indeed play a part in what’s happening in your gut.
Google it if you can’t tell with your own body. If it was exclusively “muscle controlled” then people wouldn’t get sick on bumpy rides or the Teacups at Disneyland.
Posted 3/17/2018 7:54 AM (GMT 0)
I have found that with this current flare up I was getting up almost every 2 hours at night to use the bathroom when it all first started. I have left sided UC and sleeping on my L side was painful. I found I was more comfortable sleeping propped up on my R side . I also ate my dinner earlier and had a light snack before bed around 8pm. Being on prednisone makes you want to eat all the time. Once I started eating less before bed, I noticed that the number of times I got up to use the bathroom also decreased.
Just my experience.
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