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Any advice for the nights? Waking every hour!

Fri, April 10, 2020 6:52 AM

I've been in a UC flare up for 4-5 weeks now - started a tapered does of 50mg of Prednisone 3 weeks ago.

Likely the flare was triggered by immunotherapy cancer treatment.  My immunotherapy is has been shelved until I get my UC under control. 

The Prednisone doesn't seem to be doing much for my symptoms yet, but I'm hopeful.

My main difficulty is lack of sleep. During this flare I seem to wake at least once an hour during the night to let off some gas and splatter. It's exhausting to bolt out of bed and run for the bathroom all night. 

I'm not looking for a cure, just any advice about how others handle nights like these.

Thank you

FPO mikey62
Joined Apr 10, 2020

Thu, November 25, 2021 6:22 AM

Reply posted for mikey62.

I found something similar when I started a flare, especially during the night. When I'm on prednisone I have insomnia, so I take sleeping pills anyways, why not try AM/PM steroids. drs approval & went to 20mg 7a/20mg 7p, I also found using Mesalamine enema REALLY helped. For me, it was like taking a decongestant for a cold, I work all day to feel good, but at night there's a gap & that's when all the symptoms came back, it was a yo-yo. 

Hope this helps & really hope you can sleep thru the night!

FPO MauiOnMyMind
Joined Nov 19, 2021

Mon, July 26, 2021 11:40 PM

Reply posted for mikey62.

Hi! I am a little late as well but have this same exact problem even when I am not in a flare. In a flare, I wake up 5-6 times a night. My GI doctor reccomended I take Benedryl to make me tired and Immodium for the diarrhea, gas, and cramping. I found the Immodium helped but the Benedryl does not really work on me. I also use cannabis on nights that it are bad and noticed that CBD helps with the inflammation and helps me relax and sleep. What has really helped me is Remicade, so if you have not tried that yet, I definetly recommend. It is the only other medication that has worked for me besides Prednisone, but everyone is different! I hope this helped and you are feeling better!! UC is never fun.

FPO juliaw
Joined Jul 26, 2021

Tue, June 29, 2021 11:35 AM

Reply posted for SN009.

I totally agree with Mikey62. I was recently diagnosed with chrons about 3 months ago and have been on prednisone for about 2 months and Humira for about a month and a half. The prednisone has helped a lot while I'm waiting for the full 3 months for the Humira to start fully working, but taking cannabis has helped maintain my appetite and allows me to usually get a full night of sleep. The biggest issue I had was keeping my acid reflux down at night from over medicating with cannabis,but with a new prescription of Omeprazole, that seems to be solved as I dont get heartburn anymore. If you're not into smoking cannabis, there are edibles available as well.. definitely worth testing out to see if can help with your issues.

FPO Getbeatcrohns
Joined Jun 29, 2021

Sun, May 16, 2021 2:41 PM

Reply posted for mikey62.

I'm a little late to the party, just joined the site/community last week. You may have already tried, or already been offered this advice but cannabis products really help with my flares and stomach pain. CBD is wonderful, specifically for folks like us, CBG. It is non psychoactive (no high) and is wonderful for internal inflammation, especially the gut!

Hope you are doing well, I know your post is over a year old. I have been in cannabis for half my life so I always like to share what helps me in regard to sleeping and helping with the anxiety of night time and flares. 

Joined May 14, 2021

Thu, February 11, 2021 9:21 PM

Reply posted for mikey62.

I've been flaring for 3 months now and understand your concerns about sleeping through the night. I'm sorry you're feeling poorly and hope that you find relief soon. Everyone who has responded offered solid advice I've been worried about taking anything for fear of having an accident. This is a miserable disease and hopefully there will be a cure in our lifetime. For now though, I'm sure all of us do the best we can every single day and night.

FPO Frankiedfourleg
Joined Jan 31, 2021

Thu, October 29, 2020 9:58 PM

Reply posted for Troy Humira .

Try not to eat hours before going to sleep it will help sorry you are also dealing with this tough disease

FPO Brent
Joined Oct 29, 2020

Wed, October 14, 2020 12:23 PM

Reply posted for mikey62.

Hi, I recommend Benadryl capsules. The "quick release" form. Maybe ask your Dr. first if it is o.k. with you, your body. 

FPO Troy Humira
Joined Feb 3, 2021

Fri, September 11, 2020 8:52 PM

Reply posted for mikey62.

Hi. New to this forum. I registered after wanting to respond to reading your post, Mikey62.

I do experience being up through the night just like you. It happens.

I will be so run down I take the next day off if its work day. I am self employed and that helps.

I recently tried dicyclomine. I am not an advocate of medication. Its a personal choice.

This immedicately stopped my issue or rapid succession needing to get up for the bathroom.

I do not treat my Crohns. But this up through the night suff is not something that we can continue.

I suggest consulting your doctor and use the dicyclomine as needed so you are getting REST during the night.

I don't want to be a pill is a solution person-so along with getting rest continue to investigate 
other solutions or investigate what might be instigators into the pm aggitation. For me coffee is a real bad trigger as is heavy rich foods.

OMG- I know exactly how you feel.

All the Best-


FPO sagebrush
Joined Sep 11, 2020

Thu, July 30, 2020 9:59 AM

Reply posted for Pinkyposy.

Have you tried Bentyl for the gurgling gas pain?  It is a godsend for me.  You can take it up to 4 times a day.  As soon as the noise starts in my stomach, I pop one and within 15 minutes, I start burping and instant relief.

Joined Jul 15, 2020

Thu, July 30, 2020 9:57 AM

Reply posted for mikey62.

I've lived with UC since childhood but officially diagnosed 11 years ago.  I too suffered from the same sypmtoms...  In fact, even when I wasn't suffering from the symptoms, I was still getting up 4-5 times a night to use the restroom out of habit.    Lack of rest is the worst!  When I was hospitalized with a flare up -  they prescirbied Ambien for the first time which definitely knocked me out and I never experienced any accidents.  However, my doctor does not seem to like to prescribe Ambien long-term so as an alternative, I have been taking Alprazolam (Xanax).  I split in half a .5 mg pill at night and I am able to get quality sleep - only getting up once in the night.  I'm very thankful I found a medication that relaxes me, shuts off my brain and doesn't seem to irritate my colon.  I hope you find this information helpful.

Joined Jul 15, 2020

Thu, June 11, 2020 4:25 PM

Reply posted for CCLiu.

I have taken Immodium 6 times per day for 13+ years.  

I asked my GI Dr. if it was ok 13 years ago and he said it was fine. 

However, my newest Primary Care physician wouldn't write me a prescription so i could buy more than just 1 box at a time at Costco, until I returned to my GI Dr. and asked if there was something "better" to take.  I have declined and just continue to make frequent trips to a big box store to buy it 36 at a time.  I have no interest in trying some absurdly priced medication that won't do as well.

FPO dcloes
Joined Jun 11, 2020

Sat, May 30, 2020 9:20 PM

Reply posted for mikey62.

I found prednisone to be like amphetamine! I think I used pred for fibromyalgia or poison oak, maybe both. I found hash oil (!) to calm my body. I would take 1/2 an Ambian if you're having trouble sleeping. Also if you have an early dinner, you can get started on the many bowel movements we all have thru the night. A small dinner is also helpfu..less to unload. Someone mentioned Imodiam..that's something I might try occasionally..especially if I ever fly again.

FPO Horst
Joined May 30, 2020

Wed, May 06, 2020 7:19 PM

Reply posted for mikey62.

Have you tried Imodium? I have had success with it in the past even during flareups and I have used it at night times occasionally. There may be complications with using it on a daily basis - talk to your doctor - but it may be able to provide relief in key spots ie. you can get some sleep every now and then. 

Joined May 6, 2020

Mon, May 04, 2020 1:31 AM

Reply posted for mikey62.

Ive been using a Hot water bottle for the constant cramping (?trapped wind) and paracetamol. 

FPO Pinkyposy
Joined May 4, 2020

Tue, April 14, 2020 5:34 AM

Reply posted for mikey62.

Feel your pain I'm flaring at the moment I'm med free as all meds were making me worse . I'm every 2 hours . Not to bad during the day nights are worse . Scary isnt it :( all the best

FPO mixy11
Joined Nov 5, 2018

Mon, April 13, 2020 6:59 AM

Reply posted for charbs.

Thnx charbs
I might have an issue with taking sleeping meds like Ambien, because I do NOT want to sleep through one of my urges and have an "accident" in bed.
I seem fall asleep okay, but when the urge to go hits me, I shoot out of bed and head for the bathroom. It wakes me up almost every hour.

Thank you for the suggestion, hope you're having a good weekend!

FPO mikey62
Joined Apr 10, 2020

Sun, April 12, 2020 9:08 AM

Reply posted for mikey62.

Try Ambien. It's been a godsend for me.

FPO charbs
Joined Oct 31, 2016

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