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I don't think I have pouchitis (but can't be sure). I'm definitely not pregnant. Nothing is different in my sleep schedule (I do wake up twice or so in the night to go to the bathroom, as always.)

 

But I am so tired. I wake up tired. I want naps all day. I can't concentrate at work because I feel like I need a week's worth of sleep. I don't feel depressed. I'm actually pretty excited about things in my life. But I just want to sleep. My body aches, and everything feels heavy.

 

If left unattended, I really could sleep for entire days on end.

 

I take several types of vitamins and supplements and my bloodwork came out well. No changes in meds at all.

 

Perhaps this is pouchitis? What is going on? Opinions? This has been going on for more than a month.

 

Thanks everyone!

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What's your B12 level?  Mine was "high," and my GI said that high results in pouch patients can show skewed results, meaning they're falsely high. I don't know the mechanism behind it, I just took his word for it. I'm on B12 shots now, every other week, and they do help some, though I, too, despite past fairly normal labs, have fatigue.

Do have them check an iron panel (not just iron alone; ferritin, iron, iron binding capacity, and transferrin) if they haven't. My iron was borderline, but the rest were super messed up, when I had iron deficiency anemia.
Originally Posted by lina:

I don't think I have pouchitis (but can't be sure). I'm definitely not pregnant. Nothing is different in my sleep schedule (I do wake up twice or so in the night to go to the bathroom, as always.)

 

But I am so tired. I wake up tired. I want naps all day. I can't concentrate at work because I feel like I need a week's worth of sleep. I don't feel depressed. I'm actually pretty excited about things in my life. But I just want to sleep. My body aches, and everything feels heavy.

 

If left unattended, I really could sleep for entire days on end.

 

I take several types of vitamins and supplements and my bloodwork came out well. No changes in meds at all.

 

Perhaps this is pouchitis? What is going on? Opinions? This has been going on for more than a month.

 

Thanks everyone!

I'm just wondering if you have considered that you have sleep apnea. I recently was diagnosed after many years of being tired. I am also anemic because of the pouch (13 yrs. with pouch)and blamed tiredness on that. But iron levels are good and i still felt awful everyday.(never felt rested, no matter how much sleep) I finally asked my ENT dr about it and he immediately  scheduled a sleep study. I do not fit the typical profile of a man over 50 and overweight. When I told my GP that I have it, she said "you don't fit the profile" and was really surprised! No doctor ever mentioned it--and I have alot of doctors.

3 months later using a cpap machine I am feeling much better. I suggest you goggle "sleep apnea" and see if it sounds like you. It is extremely under diagnosed.

check out cpaptalk.com. Very informative.

 

When I am dehydrated I have the same symptoms you are describing.  Actually, at those times I need more than just water.  So, I begin drinking Pedialyte.  I'm not crazy about Gatorade.  When I had an ileostomy I used to head to the ER for an IV to hydrate me.  Haven't needed to do that since takedown 12 years ago.  Hydration made a real difference for me!  Best wishes!

I laughingly say that it is a lifestyle choice that I did not choose!

I get so tired that on my way home from work (in the subway or tram) I just want to lay on the floor and cry.

I used to take naps in my boss's car when I was a student working in a souvenir shop in Paris (led to all sorts of strange situations...it was parked in the street in front of our shop and tourists would  constantly knock on the window to see if I was alive or call the beat cops to check on me...they knew me by then and just watched over me in the end!).

I couldn't make it through the day without a nap...

Now I have upped my protein intake, take liquid Vit B complex drops (absorbs better), hydrate very well (homemade lemonaide with tons of fresh mint, lemons and no sugar) along with all of the other supplements. Doesn't mean that I am not still exhausted but it helps...I also exercise a lot...anti-intuitive but it works...the more I exercise the more energy I have in the long run. (very exhausting at first but it also helps you to sleep better)...

Another thought is a systemic infection. About 15yrs back I was dragging so badly that I could barely function...climbing the steps up the metro or in my building (2nd flr walk-up) had me in tears...hubby would  call me sleeping beauty...could not get enough sleep no matter what.

Then I started getting small pimple-like cysts that infected quickly. It took a long time but we got a handle on it (turned out that I had necrosis behind my pouch that was causing a systemic infection) after dozens of runs of antibiotics and treatments and finally surgery I was fine.

It could also be food alergies, absorption problems or a combination of many things...just keep a journal of your efforts and write what helps and what hurts...you may be surgar or carb sensitive too...everytime that I eat either I crash and burn within 20mins. Zaps the energy right out of me to the point that I can no longer eat any carbs while working (I stick to proteins and salad).

No other ideas but I am sure that someone else with have more.

Good luck

Sharon

Hi all! Thank you so much for your replies. I wanted to update and share what I found out.

I did two things:
1. I added supplements: a sublingual b-12 supplement, a turmeric supplement, and an astaxanathin supplement (all organic/gluten free) to my daily supplements and vitamins.

Ok, sorta helped. I'll keep that up.

2. Then I finally did the thing I didn't want to do before because I'm silly. I cut out all gluten.

I've burped my whole life, all the time. I stopped burping in one day.

My fatigue got better.

Today I was tempted and ate a slice of cheese pizza. Boy, do I regret it. I feel exhausted again.

So, in my gluten-relapse haze, I just read a random online blog blog and holy cow, I wish I'd just acknowledged this gluten idea years ago. But all my medical tests came back negative for celiac! I also tested negative for gluten sensitivity, for crying out loud! But the proof is in the pudding. (The gluten free pudding that is, ba dum dum.)

Here's the blog article I just read that made me realize it more: http://www.mindbodygreen.com/0...uten-intolerant.html

Maybe I'm not the only one with this issue who tested out just fine before. Hopefully this helps someone else out there.

I'm gonna take a nap and stay far, far away from gluten!

Thanks all!

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