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Abdominal pain with "diarrhea" upon waking up only, i've never seen anything like this

Discussion in 'Gastrointestinal and Urinary' started by Hubris, Feb 20, 2018.

  1. Hubris

    Hubris

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    Based on the title you might think yeah, morning diarrhea ain't that rare but let me elaborate on what exactly is going on. I've had this problem for 11 years and been to many gastroenterologists but nobody has ever been able to explain this thing to me.

    Context: toxoplasmosis at 11 years old, from there on slight neurological problems and "IBS". 5 months long pneumonia + EBV infection at 17 years old, housebound since, 21 now.

    A little summary of my story: Ever since i was born i hated being woken up A LOT. I don't know what normal people feel like when they get woken up before their natural awakening. I know that obviously they don't feel good but if they felt as bad as i did society would literally collapse and nobody would go to work or school. To give some perspective, i would rather do a colonoscopy or gastroscopy every morning than having to wake up early. When i was a kid, i thought everyone felt that way but now that i know how the world works it's pretty obvious it's not the case.

    So what did it feel like? I can't really describe it but it's similar to the malaise from PEM, plus feeling like you just HAVE to keep sleeping. It's a very intense feeling of physical malaise, mostly concentrated in the head but doesn't feel like a headache. No anxiety or anything of the sort, infact it's a suffering so intense that even if you had anxiety you probably wouldn't notice it, same for any other feeling unless it was extremely strong.

    This happened since i remember, and infact my first memory is the malaise i had entering kindergarten for the first time because i was woken up early.

    When i was 11 years old i had toxoplasmosis, and from that moment i started having intense abdominal pain every morning with diarrhea, in addition to the malaise from being woken up. But here's the thing: this would only happen if i was woken up early. If i could wake up by myself(aka sleep not interrupted), no malaise no pain and no diarrhea.

    I was diagnosed with IBS and you could theorize a psychological cause for this but i can tell you it's just not true for many reasons. One reason is that it didn't matter where i had to go after being woken up. Even if i was waking up to go to the place i liked the most, and i knew it from before and was excited, it would still happen. I remember waking up to go karting which i absolutely loved and same thing happened. I remember my parents booking a flight during the night because it was cheaper, we were going on vacation to a beautiful place; super intense malaise having to wake up in the middle of the night and RAGING diarrhea at the airport with immense pain.
    It makes absolutely no sense to think i had these problems because i didn't want to go to school or whatever.

    On the other hand, my diarrhea and pain was never really triggered by anything else aside from very rare exceptions. Even if i was really stressed, scared, bullied you name it i would almost never get abdominal pain and diarrhea. This is weird because even illnesses that aren't psychological can get triggered by stress but with me it just didn't happen.

    As i mentioned when i was 17 i had a pneumonia which lasted 5 months, i was also tested positive for EBV and staphylococcus aureus. From there on extreme fatigue and cognitive problems, sleep got more unrefreshing, POTS etc the usual stuff, can't leave the house or study.

    What's interesting though is that the "sleep diarrhea" changed again, now it's different.
    - Obviously now i have malaise every morning and unrefreshing sleep, even if i'm allowed to sleep uninterrupted, which is just standard me/cfs symptoms. However, in addition to that, upon waking up (and it may take hours for me to wake up, the last 2 hours of my sleep are usually fragmented) i often have some painful bowel spasms, but they don't give me diarrhea.

    - If i get woken up, the intestinal pain is more intense and lasts for a lot longer. Despite this, i still usually don't get diarrhea, but my stool may be premature, i can tell because the first pieces that come out look absolutely ok,good then the ones after gradually look more and more like they shouldn't have come out, slightly liquid but they just don't look right. I'm taking Mesalazine 400mg twice a day for eosinophilic inflammation found in the colonoscopy (but no diagnosis because apparently i just don't fit any criteria, and if i had a primary GI illness my symptoms would be way different) and one of these mornings i found the pill almost completely unscathed in the stool, which is just obvious that these spasms make it come out prematurely.

    - The interesting part is that the bowel spasms increase with PEM also, more than fatigue does. Meaning: if i exert myself a lot even if i wake up naturally the days after i get a lot of bowel spasms upon waking up with premature stool. I also get some stomach symptoms(and other stuff like palpitations) where i have to eat something early in the morning before going back to bed immediately otherwise i feel a "void" that won't let me "fall asleep" again.

    And again, during the day i never have pain, diarrhea or GI problems of any kind except for rare occasions.
    (I weigh 42 kg by the way, i'm 170cm tall)

    I just don't understand. It's clearly something to do with sleep but that's all i can guess.
    I've never read of anyone experiencing something close to this and doctors have absolutely no idea. Anyone?

    Thanks for reading friends
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I have no answers but tagging the person I consider the "GI expert" of PR who often has amazing out of the box ideas @kangaSue
     
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  3. kangaSue

    kangaSue Senior Member

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    Thanks for the vote of confidence but I'm stumped with this one.
     
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  4. kangaSue

    kangaSue Senior Member

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    @Hubris I've spent many hundreds of hours trawling forums for GI problems and I can honestly say I have never heard of anyone mentioning having similar symptoms to what you're describing here. All I can think of is maybe it's a circadian rhythm problem but don't what mechanism would trigger a bowel involvement too.
     
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  5. kangaSue

    kangaSue Senior Member

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  6. Hubris

    Hubris

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    Yeah my 2 hypothesis were that either somehow the inflammation/"autoimmunity" increases when i'm waking up, or my brain sending faulty signals to my bowels from circadian rhythm disruption, i guess it's more likely to be the latter or maybe a combination of the two. I can't read up on it right now because it's too long for my brain and i'm also in a pinch with my parents being extremely abusive and mentally ill, but i wanted to make this post anyway because maybe someone might have an idea about this mysterious symptom. Thanks!
     
  7. kangaSue

    kangaSue Senior Member

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  8. Hubris

    Hubris

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    Hmm i don't know, it doesn't seem like it but thanks for your suggestions :) i suppose it has more to do with circadian rthythm, but it's probably not a priority right now, i'll definitely do extensive research on it when i'm better though
     

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