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Lack of Sleep causing more symptoms? :(

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Ulcerative Colitis
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blossom829
New Member
Joined : Jan 2017
Posts : 18
Posted 7/29/2020 9:37 AM (GMT -6)
I know I’ve been posting on here pretty frequently, as you can imagine it’s been one hell of a summer for me medically.

I started on 9MG oral Uceris last Thursday for stomach pain and occasional urgency/loose stools, and have slowly been experiencing more and more trouble sleeping. Until last night, boom, total insomnia. I slept maybe an hour and a half and am totally exhausted. Today, I’m suffering with super loose and mushy diarrhea. Been going since about 4AM (because, ya know, I was awake). Im not running to the toilet super often, but when I do go, it’s like “omg how is there so much.” Anxiety has been god awful as well.

In other random instances where I’ve not slept nearly enough, I always seem to get bowel symptoms like nausea and diarrhea afterwards (albeit, not to this extent, but I’m also flaring so). I also use Canasa supps nightly, and personally find that if I don’t sleep enough, they cause a couple extra trips to the bathroom because they didn’t fully dissolve.

I’m not sure what I’m looking for from this post - maybe reassurance that this terrible D is from lack of sleep/anxiety/undissolved supp? And not from my flare suddenly being out of control? (My last scope in May showed very very minimal inflammation, so little that my doctor was going to leave it alone until I started having symptoms). I called my doctor to ask about possibly Melatonin/something similar so I actually get some sleep while on this drug - any other recs for UC friendly sleep aids appreciated!

Or maybe I just need someone to tell me it’s gonna be alright. I’m not a frequent flare-er (last one was about 2 years ago), and I’m just feeling very discouraged. It’s also my birthday this weekend, so I’m feeling super down 😔


Meds: 9MG Uceris, 3 Lialda, 3 Visbiome Probiotics, 3 Tumeric Capsules, Canasa supps nightly
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2380
Posted 7/29/2020 9:57 AM (GMT -6)
I’m sure it doesn’t help. I always have an unhappy digestive system if I don’t sleep enough. You could also try to go up to 4 lialda (3 is a strange number to be on). Flare ups stink, they put us on edge and make us second guess everything. Try to focus on something positive every day and hang in there. This will pass eventually!
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blossom829
New Member
Joined : Jan 2017
Posts : 18
Posted 7/29/2020 10:02 AM (GMT -6)
Thank you so much, that’s what I’m thinking. And I can ask my Dr. about maybe increasing the Lialda - I’d certainly be open to that before trying a different med. I’m only 4’11 but hey, the more pills the merrier. I appreciate your kindness!
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2380
Posted 7/29/2020 7:39 PM (GMT -6)
I'm also only 4'11", but 4 Lialda was the magic number for me for a long time. I switched to Colazal 6 weeks ago because I was having issues not breaking down the coating on the generic version of Lialda that my insurance covers. According to my doctor it is more the severity of your flare up that determines Lialda dosing, other meds are by size/weight, but not Lialda. Hope it helps!
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deltaforce
Veteran Member
Joined : Jun 2010
Posts : 2373
Posted 7/30/2020 12:58 PM (GMT -6)
For me, sleep is of utmost importance. If for any reason, I don't sleep, it definitely gives me abdominal troubles. It can be as simple as just passing gas but that's enough trigger to get out of hand very quickly.

I use slow-release melatonin as well as a quick release. I take slow-release before going to bed and if I get up anytime before 4am, I take quick release as well. If you do not take any other antioxidants, you may want to look into them too. Don't just focus on the gut, look at the body overall.
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kweeks
Veteran Member
Joined : Dec 2009
Posts : 565
Posted 7/31/2020 5:26 AM (GMT -6)
Regarding the lack of sleep and symptoms:

I find when I have bad sleeps (and this usually happens multiple days in a row) it causes my anxiety to go up and then my digestive symptoms act up. Probably not UC symptoms just that my digestion is off due to the sleeping patterns and then food goes off routine and then it is basically a cycle Of all these things causing digestive upset. For me anyways.

Good luck. Keep us posted.
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blossom829
New Member
Joined : Jan 2017
Posts : 18
Posted 7/31/2020 7:07 AM (GMT -6)
Hi all - just here with an update.

So I tried an herbal sleep supplement the next night, which caused a little bit of help. This made me feel better yesterday, but still had urgent, bad D yesterday evening. Tried melatonin last night, which helped a little better, but again woke up this morning with terrible watery D.

How could it be I wasn’t having any D of this sort before starting the Uceris/having lack of sleep? I’m totally freaked out, my colitis has never in my entire 15 years of having it, caused watery explosive D like this. And I just really have a hard time believing that all of a sudden it is.

Starting to feel really hopeless and overwhelmed. I can’t take the confusion and stress anymore. I also recently moved so I’m in between GI doctors and my previous one is getting frustrated with my constant calls. Just want someone to help me.
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Kevin Watson
Regular Member
Joined : Aug 2012
Posts : 334
Posted 8/1/2020 2:52 PM (GMT -6)
Hey Blossom!

Please don't feel overwhelmed, I remember that feeling only too well and there are things that might help you that you haven't tried. I'm saying this as someone who had severe extensive UC, affecting the whole bowel and for around 18 months, I lived with urgent diarrhea 10 time a day (I got through the working day by not eating until I got home). You're on Uceris, which is good for resolving inflammation but how's your diet?

First up, does your diet contain any nuts, seeds or wheat? If so try cutting them out COMPLETELY, no exceptions. Same with raw fruit and veg. If a gluten-free burger bun has sesame seeds on it, don't eat it - think what would happen if you ran gravel over inflamed skin sores - we don't want any abrasive foods irritating your colon further. I'm suggesting this is enough for everyone but it was enough for me to get started and if taking this step works for you too then I have a few more tricks for phase two ; )
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blossom829
New Member
Joined : Jan 2017
Posts : 18
Posted 8/4/2020 10:18 AM (GMT -6)
Hi again all - I have another update that definitely helps explain some of what’s been going on with me. Turns out - I have a 4.3 CM cyst on my right ovary, which is looking to be the culprit of all of my stomach woes. I’m meeting with a surgeon this afternoon to discuss my options. I called my GI and told him and he said to stop the Uceris so I believe he’s pretty confident this is the root of my issues. Only thing I’m a little worried about is the Diarrhea I’ve been having but from what I’ve read if the cyst is pressing against the bowel it can easily cause this problem. I’ll know more this afternoon!


Thanks to all for your kind words and support.
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2380
Posted 8/4/2020 2:01 PM (GMT -6)
Ouch! Hope they can get that cyst taken care of ASAP! I have them develop from time to time on my left ovary and it for sure makes my UC worse when they show up.
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