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Ulcerative Colitis
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Posted 10/24/2019 5:03 PM (GMT 0)
I'm having frequency during the day like anyone does during a flare, but the real torment is night time. Frequency and urgency goes way up, until I'm running to the toilet at least once an hour. I am extremely sleep deprived and I will try anything to get relief. I tried taking immodium just to stop it up a bit, but it didn't really work.

So... desperate... for... sleep.

My prednisone dose is divided between morning and night so that I get some night time coverage, but it doesn't seem to knock back the frequency at all. If I could just sleep for 3 hours straight, I would feel like a new person.

Any ideas? Just to rehash: I can't take rectal meds, they won't work / allergic.
Posted 10/24/2019 6:07 PM (GMT 0)
I'd take all of your pred 1st thing in the morning. Split doses (taking some morning and some later) are notorious for insomnia.

There's always prescription sleep aids, if over-the-counter do not work.

If it is your bowels that are waking you up then the inflammation would need to be taken care of.
Posted 10/24/2019 6:43 PM (GMT 0)
You could try Melatonine for sleep.
Posted 10/24/2019 6:47 PM (GMT 0)
I hope you will get better soon!
When the maximum dose of prednisone wasn’t enough to control a very bad flare, and I was already on (Imuran + Mesalamine ), the doctor added Prograf and that helped in controlling the flare.
I don’t know if you tried that before or if you are allergic to it. There are other immune suppressants besides Azathioprine and 6pm.
I was lucky I was overseas at that time, there was no insurance controlling doctor’s decision, Switching to Dipentum ( I failed other medications and no one in the US suggested Dipentum) and prograf saved my life( prograf was temporary like prednisone to control the flare)
When I came back to the US, insurance refused to cover Dipentum! I buy it on my own expense.
Posted 10/24/2019 10:00 PM (GMT 0)
I don't have insomnia. I am exhausted! I can sleep at the drop of a hat. The problem is my bowels wake me up. It's like sleep torture. I don't want to take sleeping pills that prevent me from waking up, because I'll probably poop in my pants!

Prograf is a cancer drug in the U.S. The definitely don't give that for IBD here.
Posted 10/24/2019 10:50 PM (GMT 0)
Can you use a hydrocortisone enema or even a suppository to help with the rectal inflammation?
Posted 10/24/2019 11:46 PM (GMT 0)
tacrolimus suppository (you allergic to those too?)
Posted 10/24/2019 11:48 PM (GMT 0)
I don't know a thing about FMLA, but might it be an option for you ? maybe just till you get on top of this flare -
Posted 10/25/2019 12:59 AM (GMT 0)

MarkWithIBD said...

Prograf is a cancer drug in the U.S. The definitely don't give that for IBD here.

They most certainly do.
Posted 10/25/2019 2:11 AM (GMT 0)

beave said...

MarkWithIBD said...

Prograf is a cancer drug in the U.S. The definitely don't give that for IBD here.

They most certainly do.

I have taken cyclosporine for two different flares in the US, it is the sister drug to Prograf. My GI required me to go into the hospital to start it on an IV for 14 days.

I would take an antispasmodic prior to bed and it would help a little with the frequency and urgency at night.
Posted 10/25/2019 10:14 AM (GMT 0)
The people asking if I have suppositories need to re-read my opening post more carefully.

What's FMLA?

Antispasmodics, ok like what? Name names.

I mistook tacrolimus for tamoxifen when I made the cancer comment. Sorry, I'm on a lot of pain killers right now.
Posted 10/25/2019 10:15 AM (GMT 0)
The other thing I'm thinking about is what time of day I should skip meals so that no stool is passing at night. Would that be breakfast and morning meals I should skip?
Posted 10/25/2019 11:58 AM (GMT 0)
I have the same thing. I’ve tried everything. Timing meds and timing meals... changing diet... everything I can think of.
I just sleep on the toilet sometimes.

Don’t make big decisions.
Be careful if you drive.
Don’t batch process. More bad faster.

Things improved.
Posted 10/25/2019 12:02 PM (GMT 0)
"What's FMLA?"

The Family and Medical Leave Act of 1993 (FMLA) is a United States labor law requiring covered employers to provide employees with job-protected and unpaid leave for qualified medical and family reasons.

There's also Americans with Disabilities Act (ADA) of 1990 which applies to us, as UC is considered to be a disability.
Posted 10/25/2019 12:56 PM (GMT 0)
The medication is Bentyl, antispasmodic. Do not reduce your food intake, proper nutrition is needed for healing. Try having your evening meal earlier, around 4:00pm. Several small meals can be easier than 3 regular meals. Keep in mind your body will produce liquid stool regardless of what you eat.
Posted 10/25/2019 1:10 PM (GMT 0)
I would take two Imodium and a Bentyl about 45 minutes before getting in a car. I think it helped.

I am also allergic to 5ASA meds, I would take a steroid enema for treatment but I’d also use them to “clean me” out before a longer car ride.

There is a steroid foam if you can’t hold an enema.

I would do similar things if I needed sleep.
Posted 10/25/2019 6:08 PM (GMT 0)

Happier! said...
I have the same thing. I’ve tried everything. Timing meds and timing meals... changing diet... everything I can think of.
I just sleep on the toilet sometimes.

Don’t make big decisions.
Be careful if you drive.
Don’t batch process. More bad faster.

Things improved.

Sleeping on the toilet sad I'm glad it hasn't come to that for me yet, but I do have a pillow that I put in my lap to sort of fold my body over when I'm having really long BMs. The worst ones are when there is some solid stool and it moves at a snail's pace. One little piece at a time, takes about 20-30 mins. This disease really is perfect torture.

My friend who has Crohn's has setup a cot next to her toilet before that she slept on during flares.

straydog said...
The medication is Bentyl, antispasmodic. Do not reduce your food intake, proper nutrition is needed for healing. Try having your evening meal earlier, around 4:00pm. Several small meals can be easier than 3 regular meals. Keep in mind your body will produce liquid stool regardless of what you eat.

It's hard for me to skip meals and I rarely do it, but I do know IBDers who practice intermittent fasting. I am so sleep deprived right now that I would be willing to fast for half a day so that I'm not crapping in the middle of the night when I desperately need shut eye.

I hate this disease. Hate it, hate it, hate it. If it were a person I'd strangle them with my bare hands!
Posted 10/29/2019 1:13 AM (GMT 0)
Your painkillers don't help? That's the only thing that has helped me get sleep when flaring, when I have any, which has been rare over the years. Antispasmodics never helped me at all and I've tried several -- Bentyl, Levsin, Donnatal (my doctor told me Donnatal was the strongest). I've had to sleep in the bathroom while very ill. I brought a pillow and blankets in and would sleep on the floor in between bathroom trips (which at times were every 15-20 min. so I was barely sleeping at all, but if I tried moving to the other room, it would just trigger the urge to go again). You're right, this disease is like torture. Maybe you need a higher dose of prednisone?
Posted 10/31/2019 2:51 AM (GMT 0)
It probably isn't the best medical advice but I always backloaded my Pred at night and took 2 Benadryl to offset it. Occasionally threw a few Jack and Cokes on top of them.

That kinda worked. Sometimes.

On tough days I'd wolf down a Claritin D in the morning to wake up and get moving.

But they just cut my colon out and I'm not entirely sure I didn't take years off of my life with this whole "Living La Vida Elvis" approach.

I am not a doctor. This should be obvious.

Good luck brother.
Posted 10/31/2019 2:36 PM (GMT 0)
I'm again finding that taking all my prednisone in the morning this flare keeps me up at night! I don't get it. Since I'm up most the night anyway, I've been taking it around 3:30-4:30 a.m. and then I usually can fall asleep right afterwards. Benadryl does help but he doesn't want to be knocked out, he wants less bathroom trips. I'm surprised morphine doesn't stop you up at all.
Posted 10/31/2019 2:58 PM (GMT 0)
I’m sorry you aren’t sleeping! That is so frustrating! You mentioned timing when you eat. I’m thinking this would be what I would try. Only you would know what kind of schedule and I think it would be trial and error, and only eating foods that you tolerate the best. I know though, that all these suggestions (especially this one) require a lot of work and it can be disheartening to put in the work and see no changes. When prednisone made me not sleep I took naps on weekends, and I would often lie down and do a guided meditation for thirty minutes just to feel some rest.
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