Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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My Gastro Malaise

Discussion in 'Gastrointestinal and Urinary' started by VertigoFlyer, Sep 21, 2016.

  1. VertigoFlyer

    VertigoFlyer

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    Hi folks,

    I am a 56 year old ME patient of some 12 years. It started manifesting during a period of my life when I was having repeated severe issues with diverticulitis. This went on for 3 years of multiple visits to the ER in severe pain with severe gastro upset and a high fever. I would get admitted to the hospital, they would do LOTS of tests then send me home after 5 days with a shrug and a bag full of meds. During this time I was noticing that I was running low on energy but I attributed it to being sick. Now I think back and ponder if the ME started back then.

    Eventually I went to a surgeon to see about getting a colon resection. He did yet another colonoscopy and decided yes I needed 12 inches of my colon removed. He did the surgery the following week. It took 9 days for my digestive system to start up again. This should have happened in less than 5 days.

    After a successful relaunch of the gut I was sent home to bed rest with light exercise while it all healed. Two weeks later at 2:30am I was abruptly awakened to a pulmonary embolism. There I was drowning in air, in my birthday suit, with a room full of paramedics. WTF!!! That Sucked! The air! Right out of Me! So off we went back to the ER.

    Blood thinners for months. Lovenox is Love a NOT!

    Then came pneumonia. That sucked for two ugly weeks too....

    But I eventually got well enough to return to my high stress IT job that I loved but was outsourced just as I came back to work. Oh gee more stress... And I was noticing that my batteries were not getting charged. I never really had the same "Type A Driven Goal Oriented Self" that I used to be prior to the surgery. I could barely remember what I was supposed to do each day. Try as I may with a garage full of human powered outdoor happiness toys I could not get going. Somehow I was operating on 1/4 power at best. Too long after the surgery to be related to that. I was ALWAYS runnin on empty. And where the hell did this relentless brain fog come from????!!!!

    And something else started happening, when I went to the bathroom, either/or, afterwards, randomly, I would get a severe case of that bottom of the gut nausea so bad I would melt energetically. Like someone plugged a shop vac into my chest and sucked all the energy right out of me. This is a massive hit to my energy levels. I would sit in meetings at work after a quick stop in the men's room and suddenly crash, HARD, in front of my peers. And it continues randomly to this day on top of my ME symptoms.

    None of my doctors (including The Mayo Clinic in Scottsdale AZ) have a clue about how voiding my system randomly causes a severe energetic crash. We postulate that it might be related to ME messing with my vasovagal nerve but that's pure speculation at this point. I don't know, the doctors don't know.

    These crashes ruin a day. It ruins it for me. It ruins it for my family and friends. It scares me and my close family/friends when it happens. And it ruins it for any hope of staying gainfully employed. And it pisses me off. This is on top of the ME crashes due to doing too much because I have no freakin idea each morning just WHERE the freakin cliff is going to be, today....

    So between the random crashes, and the lethargy and the brain fog of ME I'm stuck in purgatory it seems. I make the best of my situation. I live as best I can. But I'm sure not the "ME" I used to be.

    And I'm still me inside, that TYPE A Driven Goal Oriented dude. So I'm prone to doing too much by my very nature.

    So, why the hell did I just type all that? I want to know if there is anyone else out there with a similar variation on the whole ME experience???? If so please let me know!
     
    Skippa, AndyPandy and ScottTriGuy like this.
  2. Dechi

    Dechi Senior Member

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    I am not, but your situation seems very hard to live with. You have my sympathy and I wish you the best. I hope someone with similar symptoms will have good suggestions for you.
     
  3. Skippa

    Skippa Anti-BS

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    Haha, thanks for a great read this morning :) i love your story telling style (garage full of toys hehe).

    I'm truly sorry you're going through so much crap (not intended) but I think many around here will agree the gut has much to answer for.

    Good luck with your plight, and welcome :)
     
  4. kangaSue

    kangaSue Senior Member

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    Brisbane, Australia
  5. VertigoFlyer

    VertigoFlyer

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    These are certainly interesting, and the second one I've seen before, it isn't exactly how my issue works. Mine happens after either urinating or defecating, randomly.

    I've tried the foot stool and squatting things. I've tried altering my diet, and I do take fibre daily and of course that helps to keep the diverticulitis at bay and everything else fibre does for us.

    I had a BIG crash today after visiting the men's room at a local diner. That made the rest of the day rather sucky.
     
    Skippa likes this.
  6. kangaSue

    kangaSue Senior Member

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    I have seen the same issue raised in both GI dysfunction and dysautonomia forums. Someone hypothesised that it is a lesser form of defecation syncope which I gather is likely to have a mechanism similar to that of neurocardiogenic syncope.
     
  7. Kati

    Kati Patient in training

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    Hi @VertigoFlyer welcome to the forums!

    It's quite the story you have, with your bowel issues, then the lung issues. i am sorry it happened to you.

    The kind of crash and feeling faint after going to the bathroom has happened to me, especially early on in my disease. i am not getting this as much now, and I wonder if it's because of the beta blockers I take for POTS. I also took a habit of always returning to bed after going to the bathroom. Even though it is not usually 'a work out', my body percieves it as exertion.

    Regarding POTS/autonomic dysfunction, many people have different presentations and symptoms. It might be useful to find a doctor who will perform a tilt table test for you, a real one.

    Best wishes.
     
  8. VertigoFlyer

    VertigoFlyer

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    I did a tilt-table test - twice. Both came back inconclusive...

    I do sometimes crash right into bed after going to the bathroom.
     

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