Interrupted Sleep

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)

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.

Have you tried rectal meds? They may help.

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.

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.

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)

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)

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.

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.

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?

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.

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...

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