Days not so bad, nights absolutely awful. Any suggestions?

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stephanie
Regular Member


Date Joined Jan 2004
Total Posts : 40
   Posted 12/4/2007 3:13 PM (GMT -7)   

I've been in this awful flare for over a month now.  Doc is trying to adjust meds and I'm back up to 40 mg pred, which I know will eventually kick in, but is never quick for me.  Anyway, my days are okay, going maybe 3 to 5 times throughout, but the nights are absolutely dreadful.  I'm up every 2 hours, sometimes every hour with sort of a constipation/diarrhea thing (if that makes any sense) complete with cramps, bleeding, body ache afterward.  Why the heck are the nights so much worse?  Any thoughts on how I can switch this up?  Not that I want to be running to bathroom all day, but I need some sleep.  Doc suggested trying immodium, but I'm scared to death of it, had a bad experience with it before and am afraid of toxic megacolon.  

Any input appreciated.

Thx,

Stephanie




Red_34
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Date Joined Apr 2004
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   Posted 12/4/2007 4:27 PM (GMT -7)   
What other meds are you on Stephanie?
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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/4/2007 4:43 PM (GMT -7)   
Sorry about the awful nights. Are you taking all your prednisone in the morning? I find in really bad flares that my body is so sensitive to the reduction on prednisone in the blood in the "gaps" that, if I don't split the pred half and half between morning and night, my nights got excruciating (not to mention that I "lost" too much healing ground in the evening to make it up again at night). I know that different docs have wildly different opinions on pred timing and that in theory pred is supposed to be biased towards the morning when your body's "wakeup" needs adrenaline, but this was my experience.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 17.5 15 12.5 8 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 12/4/2007 6:07 PM (GMT -7)   
I vividly remember those nights. Sitting on the toilet continuously, half-asleep, freezing cold, and that "constipation/diarrhea" you mentioned (I think it's from swelling, maybe?). Are you doing much (work, classes, etc) during the day?
What I did was I would take about a 2-3 hr nap every afternoon after classes (around 1 pm when I usually wasn't having to go as much), that way I could deal with only getting 4 or 5 hrs of sleep at night. Sorry, that's all I have to offer; I tried enemas, but those only made it worse.

Hope you feel better. Keep your chin up!
James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/4/2007 7:02 PM (GMT -7)   
I've been there before. The worst I've ever felt was when I was waking up every 30-60 minutes at night. It was like clockwork. The pain was what woke me up. Then I'd stumble into the bathroom, in a rush obviously (extreme urgency), and then lay there half-asleep but being quickly woken up from the intense pain with the light burning my eyes... and then the bloody diarrhea and feeling "unfinished". And then anticipating the next attack 30 to 60 minutes away...

That was a nightmare. I couldn't take it for longer than a few weeks, I think, and I called the ambulance and was hospitalized for 8 days.

I suspect that these bad night have everything to do with the timing of your meals and medication. Keeping a journal will help you discover relationships between the variables you can control and the severity of your symptoms. As was said by jamo0001, being busy during the day can play some role in keeping your mind somewhere else (to some degree, anyways, I am not at all implying that you can merely "think awaY' the pain and other symptoms) can make you feel better. I know I feel better when I am occupied with school or work. I tend to feel the urge to run to the bathroom as soon as I begin getting close to home when I'm commuting back from school or work. It is so strange, as soon as I turn onto the main street of my neighborhood, I often feel the attack come along. This has happened in many situations and leads me to believe that there is some strange psychological component to this illness.

Sorry I cannot provide more help. But I would say that if things are getting worse (and from what you decribe you are in an acute phase of UC), you shouldn't hesistate to admit yourself to the hospital. Use your own judgement, obviously, but if you are so terrified of food that you are losing 5-10% of your bodyweight, always feel empty-headed from the fatigue and malnutrition, and look much paler than usual... consider hospitalization.

GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 12/4/2007 7:07 PM (GMT -7)   
I used to be up all night then had to sleep all day. I started taking cough syrup with codeine in it at night and it relaxed my colon and I slept all night. A couple weeks of that and I was sleeping at night and getting my bathroom trips out of the way in the day.
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Tenth Remicade infusion Early December


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/4/2007 7:09 PM (GMT -7)   
Nights are always the worst for some reason. If you can, try sleeping in the daytime. Then you can sit on the throne with a book as much as you need to at night. And yes, changing meal times may help. Even now when I'm in remission, I rarely eat lunch at work because for so long if I ate lunch I had to run back and forth to the bathroom in the afternoon.

I do take Imodium with my doctor's approval. It's never bothered me, but each of us is different.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


stephanie
Regular Member


Date Joined Jan 2004
Total Posts : 40
   Posted 12/4/2007 7:38 PM (GMT -7)   
I'm loving all the input. Thank you guys so much. I am going to try splitting the pred for sure. I was kind of thinking about that anyway.

So far it hasn't seemed to matter whether I just have a little light soup in the late afternoon for my last meal of the day or whether I eat dinner with my family at regular time. I do agree with the psychological component though. I'll be out for a couple hours during the day and be doing okay and pull in the driveway and barely be able to get to the bathroom in time.

In addition to the 40mg pred, I'm also taking 9 colazal a day, 50 mg azathioprine in evening and morning and night canasa suppositories.

Judilyn, how much immodium to you take?

Thanks all,

Stephanie


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/4/2007 7:44 PM (GMT -7)   
stephanie said...
I'm loving all the input. Thank you guys so much. I am going to try splitting the pred for sure. I was kind of thinking about that anyway.

So far it hasn't seemed to matter whether I just have a little light soup in the late afternoon for my last meal of the day or whether I eat dinner with my family at regular time. I do agree with the psychological component though. I'll be out for a couple hours during the day and be doing okay and pull in the driveway and barely be able to get to the bathroom in time.

In addition to the 40mg pred, I'm also taking 9 colazal a day, 50 mg azathioprine in evening and morning and night canasa suppositories.

Judilyn, how much immodium to you take?

Thanks all,

Stephanie

I remember many times when I'd pull into the driveway of my home, step outside, and literally have to stand there squeezing my glutes to the maximum as I would wait for the urge and pain to pass over me. Typically this will take about a minute or two. It is unbelievable... well, obviously you believe it because you (and I'm sure many others in here) know exactly what I'm talking about! While standing on my driveway, glutes squeezed, if I was to sneeze or even move, I'd literally have an accident.
 
A funny story, I went to Vancouver this past August for a family affair, and I stayed with my immediate family (parents and sister) in a guest room at my aunt's condominium (my aunt is a Vancouver resident). I was semi-flaring during this time. I would usually be pretty fine for most of the day while I was there when we would leave the condo to go out on the town for lunch or sight-seeing, but as soon as we'd pull into the condominiums group parking area the urge to go would hit me again! It's as if my colon knows that it's near a familiar bathroom! Too weird.

kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 12/5/2007 3:22 AM (GMT -7)   
stephanie said...
I've been in this awful flare for over a month now.  Doc is trying to adjust meds and I'm back up to 40 mg pred, which I know will eventually kick in, but is never quick for me.  Anyway, my days are okay, going maybe 3 to 5 times throughout, but the nights are absolutely dreadful.  I'm up every 2 hours, sometimes every hour with sort of a constipation/diarrhea thing (if that makes any sense) complete with cramps, bleeding, body ache afterward.  Why the heck are the nights so much worse?  Any thoughts on how I can switch this up?  Not that I want to be running to bathroom all day, but I need some sleep. 
omg...  i read this and had some kind of identity crisis for a second cuz that is EXACTLY what i am going through right now AND my name is stephanie.   weird!!!
 
my flare has been a over year though. i am currently on 40mg of pred and i have to take it in the morning with my breakfast.  BUT this is anytime between 9am and 11.30am.  im not very spot on with taking it at the exact same time every day.
 
for sleep, my dr has prescribed tomazepam while on the pred. since it gives me insomnia on top of the waking up every hour or 2 to go the can.  i tried the antihistamine over the counter kind of sleeping pill but they make me super drowsy all day the next day as well as give me the shakes (unless thats the pred).  the tomazepam is good, i fall asleep and next day have no effects.
i also helps to fall back asleep for the short amount of time until the next trip to the can.
 
i take my mesalazine in the morning and night
and i try to give myself cortifoam enimas at night, but it is just so hard because my night time bm is just the beginning.  i go so much how can it even do any good if i just crap it out an hour later.  plus the pain from going doesnt help me wanting to insert anything into my poor tender sphincter!
 
sometimes in the evening, even before bed, when i go to the can, i am laid out for like an hour.  it takes a while to recover from the pain. i have to lay down and not move.  then when i do move, back to the bloody can (pardon the pun) :-)
 
lol.. i have a small electric space heater in my bathroom pointed at the toilet and a jumper(sweatshirt) to put on whenever i go to the can at night.  and lots of magazines.  but it is pretty miserable anyway.
 
i stay away from imodium cuz i had a bad experience with it on the plane.. had all the horrible symptoms of having to go and the pain, cramping etc... but nothing came out. it was miserable. never doing that again.. but thats me.
 
i have a big seminar thing going on this friday saturday and sunday from 9am -10pm and i am freakin out how i will manage to get my money's worth if i spend the evenings in the toilet rather than the forum. 
any suggestions on what to snack on as we get a 30min break every 2-3hours??? 
snacks that will hopefully keep me out of the restrooms for as long as possible.  i should be right during the day, but it is after 5pm that things just go crappy!
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure. 
50mg prednisone 1x day with breakfast 5 weeks now.. will taper next week by 10mg every 5 days.
2x 500mg mesalazine 2x morning & night - colifoam enima 1x at night - 1/2 endone every 6 hours for pain
now taking calcium supps for pred side effects - got lots of those!
50mg imuran 1x day 8pm to have a baby - VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/5/2007 7:35 AM (GMT -7)   
that's how it was for me too, the nights were the worst, someone recommended for me talk to my GI about an anti spasmodic I could take, but by that time, I was doing much better.

Here's what worked for me. Hydrocortisone enemas, it took about two weeks but they really helped me. In the meantime of those two weeks, I used a heating pad and tried not to move (I don't know why it helped but it did) and I took some tylenol PM a few times (though it makes you very groggy when you get up so just becareful if you do take it).

I know how horrible it is to get up every hour with D,B, painful nauseating cramping and all the aftershocks of the bm. Hope you are better soon!!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 12/6/2007 12:18 PM (GMT -7)   
Cant really add to any advice but reading really reminds me of the worst part of my flare . i was going every 20 minutes , and im not exaggerating, all through the night for weeks and only dozing inbetween if i was lucky, and still getting up for work at 5.30 am . This went on for 4 months and looking back i honestly dont know how i did it .

I really hope you get sorted soon.

Tabx
Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/6/2007 5:02 PM (GMT -7)   
Stephanie,

The other thing is, as you yourself realize, that in all likelihood that high dose of pred will kick in (in terms of reducing symptoms) after the usual but frustrating delay (when you are this bad) - but once it does kick in, it should quickly gather momentum.

I remember, during my worst ever attack over 20 years ago, when I was in the hospital and on an IV with steroids, it took almost 3 weeks for bloody D to stop. Speaking of splitting doses, in that flare, if a nurse was slow or even forgot to change the IV as happened once, the pain started to kick in within the hour- that's how much my body craved the steroids. They were actually thinking about surgery, but then it kicked in big time and I got formed stool without B and from there, gradually better and better. Within a bit over 2 years I was off all meds (not that I recc. that for anyone, it just so happened that I was allergic to 5ASAs and Imuran and 6MP weren't available in those days) and in the most solid remission ever to the point that it just kept going and going for 9 years.

Usually high dose pred kicks in for me within a few days, but sometimes it can take up to two weeks for a very vivcious flare to really start to tone down.

Running your food through a blender and/or eating brothy/soupy meals naturally helps reduce the pain of solid food working its way past inflamed sections. I hope you see much brighter days very very soon!

Christopher


Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering on and off ever since
10 20 17.5 15 12.5 10 mg 8 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 

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