Hey Matty,

this disease has wreaked havoc on my body for years now (btw, I am so jealous you can eat before before bed and still sleep the night),

I am frequently tired. If I could I would sleep 12 hours a day.  I take loperamide 3/day, my vitamin d and b12 levels seem to always be on the low side. My hemoglobin likes to drop to low levels once a year requiring iron infusions.

have you had blood work up recently? That’s the place I would start with one of my  physicians.

Matty, a common cause of daytime sleepiness is obstructive sleep apnea. Sleep studies are usually done at home these days (unless the questions get complicated). Perhaps your primary care doc can either order one or refer you to a sleep medicine doctor for evaluation. I’d stay away from surgeons for this, especially at first.

@New577 posted:

Hey Matty,

this disease has wreaked havoc on my body for years now (btw, I am so jealous you can eat before before bed and still sleep the night),

I am frequently tired. If I could I would sleep 12 hours a day.  I take loperamide 3/day, my vitamin d and b12 levels seem to always be on the low side. My hemoglobin likes to drop to low levels once a year requiring iron infusions.

have you had blood work up recently? That’s the place I would start with one of my  physicians.

Yeah I’ve had my blood took over the years, iron levels / vitamin D levels always fine.

Even after I wake up after 12 hours sleep I don’t know what universe I’m in till about 1 hour afterwards, I only got like this after been diagnosed with Uc in 2014 when I was 18. I’ve had all the tests done but nothing comes up as a red flag. I don’t know if it’s because I’ve still got the ulcerative colitis disease still raging even though it’s got nothing to attack.

with the not waking up part… I think my trick to that is completely emptying my pouch immediately before going to bed, if I didn’t I definitely wouldn’t sleep through

@Scott F posted:

Matty, a common cause of daytime sleepiness is obstructive sleep apnea. Sleep studies are usually done at home these days (unless the questions get complicated). Perhaps your primary care doc can either order one or refer you to a sleep medicine doctor for evaluation. I’d stay away from surgeons for this, especially at first.

Sleep apnea does sound interesting. I have a friend who has this and was experiencing the same symptoms as me ( fatigue during the day ) he was diagnosed because he was snoring during the night heavy, however my girlfriend always complains about me snoring haha. I’m definitely going to explore this. Thank you

Hi, I have up and down energy levels. I try and get 8 -9 hours of sleep. I often wake in the night, but I've started yoga, which seems to help. I usually have Iron transfusions 1 -2 times a year so that the tiredness might be low. Also, I have to work on not getting dehydrated, which can make me tired. Good luck- I think it's often quite complicated to work out.

When considering hydration, also consider whether you might be low in electrolytes.  That can cause fatigue too.

@Matty96 posted:

Sleep apnea does sound interesting. I have a friend who has this and was experiencing the same symptoms as me ( fatigue during the day ) he was diagnosed because he was snoring during the night heavy, however my girlfriend always complains about me snoring haha. I’m definitely going to explore this. Thank you

If you weigh 147 pounds, chances are slim you have sleep apnea. I have sleep apnea mainly due to my weight (5'5" 200 pounds). When you have sleep apnea you know what the main treatment is? "Lose weight". If you are 147 pounds, unless you are 5'2" or under, sounds like your weight needs to go in other direction. That being said, a sleep study to determine REM sleep ratio might be considered.

I don't think the fatigue is pouch or hydration or sleep apnea related. It could be something else. I would suggest making an appointment with your PCP. summarizing everything you have said above, and see what testing might be recommended. If your blood labs are normal, something else systemic could be going on, like with your thyroid.

@CTBarrister posted:

If you weigh 147 pounds, chances are slim you have sleep apnea. I have sleep apnea mainly due to my weight (5'5" 200 pounds). When you have sleep apnea you know what the main treatment is? "Lose weight". If you are 147 pounds, unless you are 5'2" or under, sounds like your weight needs to go in other direction. That being said, a sleep study to determine REM sleep ratio might be considered.

I don't think the fatigue is pouch or hydration or sleep apnea related. It could be something else. I would suggest making an appointment with your PCP. summarizing everything you have said above, and see what testing might be recommended. If your blood labs are normal, something else systemic could be going on, like with your thyroid.

Thank you.Yeah I’m 5ft 10 and weigh 147 I probably should have said my height in the original post. I have made a appointment with a colorectal nurse to start the ball moving. I’m from the UK so can’t directly make appointments with different doctors. You have to go to you’re primary health provider and then from there they will refer you to the necessary places.

I appreciate all the advice from everyone on here.

Higher body weight predisposes a person to sleep apnea, but about 1/3 of folks with sleep apnea aren’t overweight. Nevertheless, lots of things can cause fatigue, and a good doctor can help you sort it out.

@Matty96 posted:

I’m from the UK so can’t directly make appointments with different doctors. You have to go to you’re primary health provider and then from there they will refer you to the necessary places.

Just FYI, this is exactly how my USA insurance works.  I could try to go to the fancy specialists without a referral but it would be prohibitively expensive.

I’m tired all the time.  And I do believes it from us not working exactly as planned anymore.  I drink and drink nonstop.  I do drink water with extra electrolytes etc.  I have wondered if a sleep study would help me also.  My son had it done when he was younger.  But hated sleeping with the machine.  I also was just diagnosed with PSC of my liver and that makes me tired too.  Let us know what you find out.  

@grandmaof1 posted:

I’m tired all the time.  And I do believes it from us not working exactly as planned anymore.  I drink and drink nonstop.  I do drink water with extra electrolytes etc.  I have wondered if a sleep study would help me also.  My son had it done when he was younger.  But hated sleeping with the machine.  I also was just diagnosed with PSC of my liver and that makes me tired too.  Let us know what you find out.  

how old were you when diagnosed with PSC? I am 52 and a few years ago MRI on pouch stated dilated CBD and an intrahepatic duct . So of course i thought i had PSC. I saw a liver specialist at Cleveland Clinic who sees people with PSC and he doubts i have it. Said the dilations were not significant enough and i did not have any strictures in my ducts, for the pearl necklace appearance. But he stated we can do liver labs every 4 months to keep an eye on it. So far my liver labs have always been in range. its always in back of my mind though

I had surgery 20 years ago. I started getting tired a few months ago. I couldn't think of what changed recently, until seeing New577 post about B12. I read a book about Ultra-Processed Foods in August and my opinion was already that vitamins are useless unless you have a deficiency and reading that my opinion went further in the direction of it being useless and I stopped taking B12 vitamins, which I've been taking since the surgery. I just did a sleep study before looking at this board (I'm awaiting results). Anyways, this board is really helpful, since it's hard to find info elsewhere about all the stuff people go through. Thanks for people contributing. I'll reply to say if this helps.