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New Gastroenterologist actually knew about dysautonomia

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Sushi, Feb 27, 2018.

  1. Sushi

    Sushi Moderation Resource Albuquerque

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    I had a pre-colonoscopy appointment yesterday with a new Gastroenterologist and he actually knew about dysautonomia and took it seriously. No need to beg for a saline IV— he knew that that would be necessary.

    He also said that he would not consider doing the procedure without an anesthesiologist working with him. This was refreshing and I hope this is a trend among younger doctors .
     
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  2. vaer

    vaer

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    :)
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    This is very helpful to hear since I intend to get a colonoscopy some time in the next six months and have never had one before. I will be getting it earlier than the usual age in the US b/c of my mom's colon cancer.

    The doctor who I plan to have do it takes my MCAS very seriously and we had to figure out something I could drink for the prep that does not have food dyes in them (she usually uses gatorade which has dyes or a pre-made formula which has dyes). So instead I'd be using coconut water and dye-free Miralax (or something comparable).

    I was still concerned re: the anesthesia b/c of my dysautonomia and not supposed to have an anesthesia that blocks the calcium channel. I did not ask her about having an anesthesiologist present but this is a great idea. In general, is this not done with colonoscopies?

    She told me it is not general anesthesia and you are not intubated and they can use Propofol or a benzo like "Versed" which I think would be okay for me. Has this been your experience?

    In my case, I do poorly with extra fluid and would NOT want any extra saline b/c of the risk of third spacing/pulmonary edema (but I know I am unique in this regard amongst POTS patients).
     
  4. Sushi

    Sushi Moderation Resource Albuquerque

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    I’m trying to use the quote function on a phone so excuse the please the errors. You won’t have an anesthesiologist there unless you have a general anesthetic— rather you would have a nurse anesthesiologist there and you would have what is called conscious sedation. I had that last time and it was awful as I wasn’t really sedated and could feel everything.

    This gastroenterologist said that he would never do that with a patient who had dysautonomia. So I will have general anesthesia with propofol. I have had that in the past and everything went really well—much easier! They don’t intubate you for colonoscopies even with a general anesthetic.
     
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  5. Hubris

    Hubris

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    Why would a patient with dysautonomia need complete anesthesia? I do a colonoscopy every 6 months with conscious sedation (as you said i basically feel everything and it's really painful, and the nurses have to constantly keep me from moving), i'm diagnosed with POTS. Is it because anesthesia works less on us or what?
     
  6. Learner1

    Learner1 Forum Support Assistant

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    I have a question about colonoscopies. I'm over 50 and haven't had one, though I do have a bunch of cancer markers tested regularly, along with stool tests and have done an FOBT.

    I went to a gastro/liver doctor a year ago, to figure out why my serum ferritin was running high as well as AST/ALT above normal. I told him my primary doctor thought I had infections which had settled in my liver, particularly chlamydia pneumoniae, and even brought in a couple of supporting research articles. ;)

    He said "No one gets an infection in their liver," which is wrong, and told me my numbers were raised due to the supplements I take, and then said I was at high risk for colon cancer and needed a colonoscopy ASAP. (Guess who owns the machine?)

    This began a pitched battle with his office, who couldn't come up with a way to clean me out without using a corn-derived product that sets off my MCAS and could send me to anaphylaxis...we checked every product on the market.

    Or a diet where I wouldn't starve - I avoid sugar, corn syrup, etc. and was on ketogenic diet at the time. The only combo I could come up with was starving for 3 days while taking a lot of magnesium.

    I'm a cancer survivor, so I definitely understand the significance of colon cancer screening tests.

    So, my big question is, if the colon is squeaky clean for a colonoscopy, how does one get the 3-5 lbs of one's microbiome back?

    After fighting to get it back from chemo, then from antibiotics, it concerned me to have to rebuild all over again. Neither the doctor or his staff could give me a straight answer...

    I threw my hands up at the barriers to a safe colonoscopy. And my high ferritin came down after I learned I have heriditary hemochromatosis and had several phlebotomies. I'm still taking all those supplements and my liver has seemed fine, even with adding Valcyte.

    I'm still shaking my head over that liver doctor and his expensive machine... And keep doing other cancer market checks....
     
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  7. Sushi

    Sushi Moderation Resource Albuquerque

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    my understanding was that I needed the anesthesiologist there to monitor blood pressure, heart rate etc. so it was more having a doctor there who specializes in stabilizing vital signs rather than having a complete, general anesthesia. I may be wrong but that is how I interpreted it as my blood pressure can be very unstable and the gastroenterologist has to focus on the task that he has to do rather than monitoring vital signs.
    just out of curiosity did you and the doctor consider high-dose vitamin C?
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    No worries and the quote function does not work very well on my phone either but I have a very old phone. Am at my computer now or wouldn't be able to do all the multi-quotes.

    Sorry for my confusion but is Propofol actually considered a "general anesthesia" or is it more of a monitored anesthesia like MAC or twilight sleep?

    I was confused by this, too! I would think it would be safer for a dysautonomia patient NOT to have a general anesthesia if a procedure could be done with something like Versed.

    This question never occurred to me (and I have never had chemo... well outside of Rituximab which is guess is technically chemo) but I have definitely had damage from fluoroquinolones/ antibiotics.

    Although I was actually wondering if the opposite could ever be true? Meaning if someone had damage to the microbiome from antibiotics/ mold toxins, etc, could cleaning it out for a colonoscopy actually ever be helpful to get rid of the bad things?

    Does that mean that you will never get a colonoscopy or that you are waiting to find someone who can do it safely (or safer) for you? I am 47 and never intended to get one prior to age 50 but now that my mom is dying from Stage 4 colon cancer, the doctor told me and my sister (who is 42) to get one now and not wait.

    I know a colo-rectal doctor who does colonoscopies so I spoke to her (b/c I was concerned I'd be allergic to the solution they make you drink which usually has dyes) and she was very supportive re: finding a dye-free solution, and the right anesthesia, when we do schedule it. She said for me to wait six months is fine but I should not wait until age 50. I did not ask her re: having an actual anesthesiologist present (which I now will, once I get to this point in the future). My best friend needs to do it too (she is my age) b/c she has family history of 3-4 different cancers including colon cancer.

    So you would not have general anesthesia vs. the anesthesiologist would be there to monitor vital signs b/c of dysautonomia? I would need someone to not only monitor my BP & HR b/c of POTS/Dysautonomia, but also allergic reactions, potential third spacing of fluid, etc. The whole thing scares me b/c I have not had a surgical procedure with anesthesia of any kind since getting sick 5+ yrs ago.
     
  9. Sushi

    Sushi Moderation Resource Albuquerque

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    i’ve had propofol previously for colonoscopies and it put you out like a light in a couple seconds so yes it can be used for general anesthesia.
    No, I would have a general anesthesia. You won’t have an anesthesiologist there unless you have a general—the services of an anesthesiologist are expensive so they are only used if you are going to have a general. But for a colonoscopy the general anesthesia only lasts for about half an hour.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    Could Propofol be considered general or monitored anesthesia depending on the dose used (or some other factor)? I was curious b/c my mom had Propofol for surgery (and it was general anesthesia and she was intubated) but then later when on ventilator, they gave her Propofol and sometimes she was awake and other times she was in an induced sleep like a coma (but they could bring her out of it).

    The doctor I spoke to re: future colonoscopy said she usually uses Propofol or Versed (and I assumed she has an anesthesiologist with her and she was not doing the colonoscopy and the anesthesia by herself but am now doubting this)! I will definitely speak to her again, and am not doing this any time soon, and am not doing anything I have unanswered questions on (from the doctor).

    But I am now confused if Propofol has many different uses and if falls under more than one class of anesthesia! I hope my ramblings made sense, and if not no worries!
     
  11. liverock

    liverock Senior Member

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    @Sushi
    Billy Connelly relating the trauma of his colonoscopy prep(the night before) :rolleyes:
    (not for those sensitive to toilet humor)

     
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  12. Sushi

    Sushi Moderation Resource Albuquerque

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    Yep, pretty much sums up the experience. Jimmy Kimmel didn't talk about that part in his recent televised colonoscopy.
     
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