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

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.
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
 
 

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.

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
 
 

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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