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Interrupted Sleep

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Ulcerative Colitis
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 443
Posted 1/3/2022 8:05 AM (GMT -8)
On Inflectra. Started October 7, 2020. Almost immediately it got me into remission.
One normal BM in the morning when I would first wake up. Occasionally another normal BM in the early evening.

Im due for my next infusion next Thursday. 1/13/22.

Im thinking the “Inflectra Juice” is maybe now out of my system?

about two weeks now…I’m in this bad funk of late…where I keep waking up every one to two hours throughout the night.

I fall asleep. Two hours or so later I feel the urge and I get up…I go to the toilet…I do a little bit…look down…brown loose or brown watery in the toilet…not a lot…then I wipe and there’s a little bright red mixed with mucus on the toilet paper.
Then I go back to bed…back to sleep. An hour or two later…same thing.

When I wake up (during the hour or two later), I try and ignore the urge to go…because it’s not that strong…but I can’t fall back asleep with that urge there…so I get up….go…repeat…etc…etc.

So frustrating.

I’m getting to sleep ok. I just can’t break this “continual up in the night habit”.

Im going to bed early in the evening to try and make up for the total time I am missing sleep doing this “routine”…

I figure I’m up 6 times in the night …a total over an hour probably.

Anyone ever go through a cycle like this?

During the day, I’m going probably 5 times total. The times I go, it’s the same as the movements during the night, although the brown is more loose than watery during the day….sometimes even “loose/formed”. And sometimes no red or mucus on the toilet paper when I wipe during the days.

I believe Konsyl fiber two or three times a day is keeping me from falling into a full blown flare. But I can’t seem to figure out how to use it before bed or in the evening to help stop this lack of sleep carrousel.

I also have a GI appointment the week after the infusion on the 13th. I’m going to ask about upping the dosage or shortening the timeframe between infusions?

Post Edited (Rusty Barr) : 1/3/2022 9:48:44 AM (GMT-7)

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UCyousee
Regular Member
Joined : Feb 2014
Posts : 480
Posted 1/3/2022 10:21 AM (GMT -8)
If faecal calprotectin tests are useful for you I'd request one now to see whether you have active disease, and how bad it is. Faecal cal is pretty indicative of how active my UC is, but of course, for others it's not useful.

I started on Stelara a couple of months ago, and was worried that a 3 month gap between doses might be too large a gap, and I didn't like the idea of finding out the hard way, but I had a faecal calprotectin test at the 6 week point, and it was reassuringly normal.

EDIT - it sounds like you think you're in an early flare, so if faecal calprotectin tests work for you I think it's a good idea to get the test done before your appt, if you can, so that your Dr can discuss 'next steps' for you in terms of meds.

Post Edited (UCyousee) : 1/3/2022 11:44:43 AM (GMT-7)

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Yissurim
Regular Member
Joined : Feb 2018
Posts : 37
Posted 1/3/2022 10:59 AM (GMT -8)
Almost the same story.
I was on Ixifi for 8 months.
The last two months I basically have exactly what your describing.
Never happened to me in my 6 years of UC, even during flares.
Not sure what to do...
I assumed it was just a worsening of the desease.
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 443
Posted 1/5/2022 5:39 AM (GMT -8)
Crazy nights continue.

Last two night trouble getting to sleep. Probably it’s 1:30 or 2 am when I am actually falling asleep. I’m trying not to watch the alarm clock.

I’m going to lay down in the bed around 10 pm. Almost completely dark cool room. Air cleaner is running making a low comforting noise. I also have the alarm clock radio on very low where you can barely hear what they are saying above the noise of the air cleaner. I basically lay there listening to the radio until I fall asleep at 1:30 or so am.
(Getting up occasionally to do a little diarrhea)

Then waking up every hour to two hours. All night long! Argh.
I “sleepwalk” into the bathroom. Go. It’s dark brown/loose/watery. Not a lot. Then I wipe. Maybe a little bit of pink/red and a little bit of mucus on the toilet paper. (I’m very thankful there’s not more blood or mucus in the toilet, or on the paper). Then I “sleepwalk” back to bed. I’m able to quickly fall asleep each time now. (Once I’ve fallen asleep that first time).

This “routine” continues until I get up at around 8 am. Constantly waking up to go every hour or two. Argh!!

I can’t figure out how to break this cycle.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 1/5/2022 6:56 AM (GMT -8)
Have you talked to your dr? Maybe you could go in this week (my orders allow wiggle room for scheduling infusions of one week either way — you could call your infusion nurse and ask). You might need some adjustments in your timeframe. You might need your trough levels checked (this is usually done a day or two before your infusion) to see what your levels of inflectra are.

I’m just guessing here but if you see improvement after your infusion then dosage amounts and timeframe could get you back to remission.

So sorry! It sounds miserable!
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17888
Posted 1/5/2022 9:13 AM (GMT -8)
Have you tried rectal meds? They may help.
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 443
Posted 1/7/2022 4:50 AM (GMT -8)
Last night. Same thing. Up every hour or two. Then back to sleep. Up, a little D, then back to sleep, over and over, all night long. Every hour and a half or two hours, Almost like I have an alarm set. It’s nuts.

I have an infusion of Inflectra set for next Thursday the 13th. Then I have an appointment to see my GI the Wednesday after that. I don’t know what’s going on here in my area. (Covid? Everyone has IBD or IBS here?), But all the doctors are slammed. And other than going to the ER, (which, things are not THAT bad, and I don’t want to do that) I’m on my own until those two appointments come up. So, as far as “talk to your doctor”, or “ask your doctor for ….”…..sadly for me, I can and will do that, but that’s not happening for me until a couple of weeks. Unless I am totally in full blown flair and bum rush him at his office, I’m on my own here until my appointment. So, I’m trying to figure this out on my own, or hoping someone here has gone through what I’m going through and they can recommend trying something that doesn’t involve a doctors visit.

So, Konsyl psyllium fiber powder is helping me a lot during the day. I have been taking a teaspoon at around 10 am and another around 5 pm. I’m going around 4 or 5 times a day. Brown/loose watery. I can live with this.

It’s just the daily nighttime overnight routine that’s got me baffled.

I’ve been taking a third teaspoon of Konsyl around 11 pm.
I’m wondering if that’s the culprit. Or maybe the key is…”no solid food at all after 6 pm”? Maybe what I’m D-ing in the night, is my dinner and the “healthy” late night snacks I eat? And the 11 pm Konsyl is taking that stuff and doing the every couple of hours thing?

I’ve tried Benadryl and I’ve tried Tylenol and I’ve tried Tylenol PM. None help me stay asleep of late.

Post Edited (Rusty Barr) : 1/7/2022 5:58:16 AM (GMT-7)

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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 2002
Posted 1/7/2022 6:24 AM (GMT -8)
Do you not have an option to call/email the GI? Because they should ideally measure your inflectra levels right before your infusion i.e. the trough levels, as well as test for antibodies, in order to determine if an adjustment in dosage or frequency will help.

UC is a disease that often can't wait until scheduled appointments and you've got to be proactive in getting what you need.

You are flaring and the doctor needs to know before your infusion.
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FlowersGal
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Joined : Feb 2017
Posts : 1826
Posted 1/7/2022 8:25 AM (GMT -8)
I agree with poopydoop. You should call dr and ask if they want to check your trough levels because they have to be done just a day or two before your infusion — so if your dr does decide to check them it will be another 8 weeks before they can do it.

Not familiar with konsyl fiber but I take Metamucil and I think I was told by my regular dr that taking more makes it act more like a laxative?

What is the recommended dosage for konsyl? I take about a tablespoon of Metamucil at bedtime. Has the 2 hr poop schedule started before or after you started the fiber? Sometimes when flaring the fiber can be irritating to the gut. I’m just throwing out theories here as I’ve never had it that bad to getting up every 2 hrs. But if youre not going that often during the day then I would think it’s something in the afternoon or evening that affecting your sleep— other than that you’re flaring, obviously.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 1/7/2022 8:38 AM (GMT -8)
Your GI should check your Inflectra levels and antibodies. It's a blood test. Sorry to hear you are flaring again. I had a similar experience with that medication. It worked perfectly, but only for a couple months. I developed antibodies. Call your doctor today.
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quincy
Elite Member
Joined : May 2003
Posts : 33679
Posted 1/7/2022 11:01 AM (GMT -8)
Flowers...Metamucil, aka Konsyl, psyllium, doesn't act like a laxative...it's a multiuse product that will soften and bulk stool as well as even out peristalsis. It exercises the colon, sweeps out invaders...etc. For diarrhea, it can taken without food, but make sure it's still with a glass of water. One has to make sure that too much above recommended amount isn't taken, however... blockages, if there is constipation, could occur without enough fluids.

Take your Metamucil with meals...it acts like food. It doesn't scratch the colon.

q
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 2002
Posted 1/7/2022 11:28 AM (GMT -8)

FlowersGal said...
I agree with poopydoop. You should call dr and ask if they want to check your trough levels because they have to be done just a day or two before your infusion — so if your dr does decide to check them it will be another 8 weeks before they can do it.


I actually had the blood test for trough levels 5 minutes before my infusion, because all my care was done at the same hospital... And because I was in such a bad flare (confirmed by an emergency scope the week before) they gave me a double dose of infliximab immediately rather than waiting 8 weeks until the next infusion (or waiting to find out if i had antibodies).

If you don't tell them, they can't help you

Post Edited (poopydoop) : 1/7/2022 12:34:59 PM (GMT-7)

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UCinsouthfl
Regular Member
Joined : Mar 2014
Posts : 194
Posted 1/7/2022 11:49 AM (GMT -8)
I know you think the konsyl is helping but I would try not taking for a few days and see if anything changes.

I recently quit taking a fiber supplement that I swore was working, and my bowel movements were cut in half. I was mind blown... I would've bet anything they were helping me.
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 443
Posted 1/9/2022 5:15 AM (GMT -8)

UCinsouthfl said...
I know you think the konsyl is helping but I would try not taking for a few days and see if anything changes.

I recently quit taking a fiber supplement that I swore was working, and my bowel movements were cut in half. I was mind blown... I would've bet anything they were helping me.

Thanks. So I experimented with no Konsyl before bed. Just the dose around 10 am and the one around 4 pm. No good. It really didn’t impact the night issues but it did impact the next day…I was much more brown/watery throughout the next morning and early afternoon (yesterday). Seems the night dose affects the next morning for me a lot.

So, yesterday, I got back on the Konsyl schedule of around 9 am, then 4 pm, then 11pm.

I’ve got my infusion this Thursday. Then my GI appointment next Wednesday.

I’m going 5 to 7 times a day. Then another probably 5 times throughout the night.
Brown/loose/watery, then sometimes some pink on the toilet paper with a little bit of mucus….most of the time the toilet paper is just a little of the brown. Sometimes i do soft stools brown. Sometimes some mild tennemus. Sometimes some urgency…a quick walk to get in there to the toilet or the feeling like I might poop my pants.

Sigh. I know it could be a lot worse. The fact that I’m not seeing blood. I know that’s huge.
I’m just exhausted with the pattern I’m now stuck in.
I woke up this morning with “the blues”…feeling sorry for myself. Not being able to sleep through the night for weeks now. It’s so depressing. I know it’s not true…but I have this feeling…”I’ll never get a good nights sleep ever again”. Sigh.

I’ll try texting my GI in the morning again (Monday morning). I’ll text him again with what’s been going on. I’ll ask for a test or SOME INPUT before Thursday’s infusion. Sadly, I’m not holding out much hope I’ll hear back from him.

I’ve heard ALL the doctors in my area are overwhelmed here in South Carolina. And the hospitals they work for are having them do double duty in the hospital helping with all the Covid patients. They are ALL overwhelmed and exhausted …That the two hospitals here in my town are both exploding with the newest variant Covid patients and they are way understaffed on nurses and doctors. So it’s this massive nightmare for the health care community here.

I could be wrong, but I feel like my texts of my situation to him, if he even does read them, it’s just not that big of a deal, because there are so many people here in this area with a lot worse things going on. So I just get ignored.
He knows I’m getting the infusion Thursday. He knows I’m coming in the following week. He knows I’m flaring but there’s no blood.

You might say. “You need to get another GI”. Well, I’m on my second one now since I was diagnosed in 2016. And this guy is ten times better than the first guy. At least when I do see him I get a full appointment without getting the feeling like I’m a bother. He will talk with me until we have covered everything. My first GI was awful. In my appointments he always made me feel like he had five to ten minutes or so for me and we better talk fast because he’s got another ten people waiting. I used to bring a note pad in with me so I wouldn’t forget to talk about certain things with him, because that feeling of being rushed, I couldn’t think straight and I’d forget to ask about stuff. Just awful.

Prior to the pandemic this “new” GI would always text me back the same day.

I blame Covid for crushing my relationship with this guy. Crushing my UC care. Probably everyone else with IBD in this area too. This Covid stuff sucks.

Post Edited (Rusty Barr) : 1/9/2022 6:40:16 AM (GMT-7)

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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 2002
Posted 1/9/2022 2:41 PM (GMT 0)
Can you phone the office? Sorry to push...don't underestimate your suffering in this flare. When you've been sick for ages you can forget what "normal" is like. And then changing little things like diet or fibre supplements and trying to correlate it with every bowel movement and look for patterns...

It sucks that the doctors are so overwhelmed right now. Btw I am on my 5th GI (I think...) I haven't been able to see him in person for 2 years because of covid. We do everything by phone or email.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 1/9/2022 11:48 AM (GMT -8)
So sorry you’re going through this! I know that hopeless feeling and how crushing lack of sleep can be.

This is what frustrates me when people say covid isn’t that big of a deal and no worse than the flu. Um ….. YES it is!!! Especially is situations like yours when you need help but your dr and hospital are overwhelmed. Sorry don’t mean to get off topic!!!

Hang in there! Sounds like your GI is a good guy, just overwhelmed with the current situation.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 1/9/2022 3:41 PM (GMT -8)
I'm so sorry, Rusty.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2743
Posted 1/10/2022 9:32 AM (GMT -8)
I agree with the others about really pushing to get the test done to check your levels. If you don't have it done before your infusion it can't be done for another 8 weeks. Once they know you don't have high antibodies they can increase the dosage or frequency for you next infusion. If you don't get that test done this week you are looking at about 3-4 months before you could get a higher dose (2 months until they can test and then another 1-2 months before the infusion after that). That's a long time when flaring. Should be pretty simple for your doc to write the order for the test.
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Mariposa444
Regular Member
Joined : Apr 2015
Posts : 32
Posted 1/10/2022 3:16 PM (GMT -8)
Sorry I don’t have anything helpful Rusty except to say that I’m going through the same cycle but I do have a bit of blood with mine. It really sucks. If I have a night where I get a three hour reprieve it’s the best. I’m in a similar situation too as I emailed my GP as soon as this flare started on New Years Eve (happy new year to me 😩) and got back the auto responder saying out of office until Jan 14th.
My main goal right now is to stay out of hospital so I’ve gone into full rest mode, hardly eating a thing, a piece of toast for breakfast, some mashed potato for lunch, a small chicken sandwich for dinner. Lots of hydralite and water! I’m lucky I work from home and can take time off when I need to or work on my computer from bed.
For reference I’m on four weekly Entyvio infusions, started with eight weekly in July but I’m not sure it’s really working. Had to go onto 8 weeks of Budesonide before Christmas and I felt perfect with that! Exercising, eating healthy and normal etc. one week after finishing Budesonide course this started sad I hope you get some relief soon.
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 443
Posted 1/14/2022 4:05 AM (GMT -8)
Had my infusion yesterday morning. 5 (mg?) of Inflectra. It was 8 weeks to the day of my last infusion.
After sharing with the NP at the clinic what’s been going on. She said most patients are getting 7.5 not 5.
I’ve got my appointment with my GI this coming Wednesday.

Was hoping for a change in my situation yesterday afternoon or last night now that I’ve got the juice in me.
Nope. Same old “up every two hours or so”.

When I first went on Inflectra in the early fall it put me into remission quickly, but, I forget how long it took for it to kick in.
Typically how long does it take?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19629
Posted 1/14/2022 7:41 AM (GMT -8)
RB, click on your username & it will bring up the your past 50 threads & see what you can find. You can also try the search at the top right, type in your name & UC forum too.

I hope the dr has some ideas or answers next week.
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 443
Posted 1/15/2022 5:19 AM (GMT -8)
It’s Saturday morning. Had my 5 mg of Inflectra Thursday morning. 8 week interval.
Yesterday, Friday, during the day, I thought the Inflectra was kicking in. I still went probably about 6 times early morning to early evening, but it just felt like things might be tightening up. I felt like urgency was reduced.

But then we get to bedtime. Argh.
Nope. Another awful night of can’t fall asleep. Then finally fall asleep probably around 2 am (I make it a point to try and not clock watch).
Then waking up every hour or two to go a little bit of diarrhea. Then back to bed. Fall asleep. Repeat. Alarm goes off at 7:45 am and I get up.

The overnight routine has been going on 2 months, I think.

No blood in the toilet bowl or on the toilet paper. Sometimes a little bit of mucus on the toilet paper. All brown loose or soft formed stools, which I attribute to the Konsyl I’m taking 3 times a day (9 am/4 pm/11 pm).

I’ve got an appointment with my GI Wednesday morning. Sigh.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19629
Posted 1/15/2022 6:24 AM (GMT -8)
RB, why not get some Pepto tablets for diarrhea & try just one in the evening to see if it helps you at night. It's worth a try. about the clock watching, turn your clock around so that you cannot see the time, my dr gave me this tip years ago.

I wish I could be of more help.
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quincy
Elite Member
Joined : May 2003
Posts : 33679
Posted 1/15/2022 11:30 AM (GMT -8)
Pepto has aluminum...I would avoid it.
Are you on probiotics?
When you see your GI...ask for dicyclomine antispasmodic.
As well...what about rectal meds? I don't remember that history...

q
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 1/16/2022 9:21 AM (GMT -8)
That's unfortunate they didn't test your levels and antibodies before your infusion. Now you'll have to wait another 8 weeks.
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