Published on 12, July, 2020
Yesterday I had 2 tests.
One is called an 'Oesphageal Manometry' and I found it horrific but managed to survive it and do what was asked.
Whilst the tube was down my throat I was trying not to gag all the time, my eyes were streaming and I was panicking.
Then I had the '24 hour Oesophagael pH test' which was far worse, even though it was meant to be easier, according to the medical professional doing it.
So the tube is put through your nose and down your throat, it's attached to a monitor and you are meant to keep it in for 24 hours to monitor stomach acid.
I knew immediately that I wouldn't be able to tolerate it - I was so aware of it in my throat that I was trying not to gag all the time and when I sat in the car I could feel it moving around.
I was acutely aware of the tube and it made me feel very panicky.
Once I got home I removed it - never again.
This may mean that I won't be able to have an operation to help with stomach acid/chronic cough, as the hospital won't have the results they need.
However, it was simply totally intolerable.
When I have had gastroscopies it's been similar but I know it's for a limited period - they do it as quickly as they can but I gag constantly and they write on my report 'excessive gagging'.
I'm curious as to whether this is because of autism.
I know that we have sensitivities - touch is a major one.
I don't know how others can bear to have this thing in their throat and down their gullet, so is this to do with touch sensitivity internally?
Here's a reminder that I've just read about our sensitivies, but it doesn't talk about invasive procedures:
https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences
I don't do invasive medical procedures. If I get intolerable symptoms, I have medication that I could use to end my life. I won't be undergoing testing or treatment for any life threatening illnesses if it is invasive.
My day to day anxiety and anxiety about the future has decreased considerably since I decided this.
Thank you.
Hi Debbie
That would be my worst nightmare and think you did well to keep it in until you got back home. I suffer panic attacks which give me that exact feeling of something in your throat and it being restricted….. it’s horrible.
I would say that’s quite a traumatising experience anyway and yes I would massively struggle with that as well.
I hope there is some other way you can get the info you need
Good luck
Yes it is similar here with no choice about being under or not. I once had to have a camera up my nose and I had to white knuckle it all the way. It's the bloody "proof" and the insistence that there is only one way to get it and the "patient" needing to suffer the indignity of it.
I would love if you PMed me about what's wrong. I have had so many gastrointestinal issues in my life and a persistent army of irritant allergens, hell bent on invading and ruining my day, that I now have a few hacks for balancing gut PH etc..
Uhane said:I won't even let the docs do a mammogram or a colonoscopy. If I am under the knife and not aware and I wake up with a problem gone I am happy and grateful.
I understand but they won't do operations here via the NHS unless there is proof of the issue via 'investigations'.
Uhane said:I also get cannot abide any medical internal penetration while I'm conscious. It feels like a violation and a loss of control.
That is so well expressed and I feel the same but I've let it happen because without the results medications and operations will be withheld.
We don't have the right here to choose to be unconscious for procedures that can be and are routinely performed conscious.
We can ask, but we rarely get.
All the best with your own health issues.
How barbaric. There must be other ways to test the stomach acids at this late date. I won't even let the docs do a mammogram or a colonoscopy. If I am under the knife and not aware and I wake up with a problem gone I am happy and grateful. I actually look forward to operations like that as I know I won't be "around" for it.
I get very nervous about touch too. When they take blood I can do it if "dissociate" and keep my eyes on the needle going in and the tubes filling. It is interesting that way and not really happening to "me".
Here in the states, where people are quite litigious, doctors, especially male docs, will stand quite far from the patient and have a "chaperone" in the room at all times. I'm going through gastrointestinal distress issues around some pernicious bacterial laden food I ate while in an evacuee facility. I want my body back. It feels right now, like ti's someone else's to dither with.
I would have done the same as you did with that infernal tube. That is such a draconian demand such a .. a violation. Touch, for me is specific. I love a hug if it is strong, or pressing a hand or such. It's light touch or holding extended contact that gives me the yips! I also cannot abide any medical internal penetration while I'm conscious. It feels like a violation and a loss of control. Odd thing is I like to actively touch things very much, like seeing a texture and having the impulse to touch. I also enjoy tasting metals and stones with my tongue to taste the molecular makeup (not or azurite or cobalt or the like).
For me touch and sight are sometimes interchangeable for things that are up close. Do you get that too?
Amerantin (former member) said:I’m gagging just thinking about it
It's reassuring to know it's not just me that feels this way.
Amerantin (former member) said:How are you supposed to eat and drink with a tube in your throat?
It's not very wide - picture below from Google.
I'd really like to know how unusual my response was.
How are you supposed to eat and drink with a tube in your throat?
I’m gagging just thinking about it.
Judge Dredd said:The feeling of having a cable snaking through your arteries is interesting.
Yes, I can imagine that would be very strange.
I've had gastroscopies, colonoscopies and stigmoidoscopies and they all feel very odd (you are wide awake for those).
It's the nose/throat (especially anything going down the throat/oesophagus) scenario though that's quite different for me... especially taking it home with me and being expected to do daily living activities with it in.
Ben said:I don't think I could have tolerated it.
Amerantin (former member) said: I don’t think I could ever agree to such a procedure without sedation, it sounds awful.
Interesting.
I'm not alone in this then!
Ben said:I hope things improve for you
TheCatWoman said:I don't think its all because you're autistic either, it's a nasty invasive procedure, no one wants to feel as though they're choking.
Thank you for your thoughtful response.
Amerantin (former member) said:I don’t think I could ever agree to such a procedure without sedation, it sounds awful.
I had sedation once for a gastroscopy but that's because it was private (on insurance) and it was so much better.
I've asked for sedation on the NHS but it's never happened.
I'm OK thanks - I have just returned the instrument of torture to the hospital.
The worst thing for me was that I was meant to keep the thing in for 24 hours - when you know it's just for a few minutes it makes all the difference.
Amerantin (former member) said:I hope it works out for you and you are okay.
Thank you for your kind words.
LOL, a doctor told me that ASD patients can have strange reactions to procedures. I had a coronary angiography, I refused general anaesthetic and I spent all the time wide awake, looking at the monitor and chatting with the doc about the (pitiful) state of my coronaries. He was almost scared, usually patients ask to be knocked out and do not look at the monitors. The feeling of having a cable snaking through your arteries is interesting.
Debbie, I'm sorry to read you had to suffer that particular procedure, I don't think I could have tolerated it.
Maybe our autism could make us more apprehensive than others; however, I'm sure all patients would struggle with that one.
I hope things improve for you,
Ben
I’m really sorry to hear you had to go through this.
My dad went through a similar thing many years ago and wouldn’t tolerate it so eventually they agreed to sedate him. I don’t think I could ever agree to such a procedure without sedation, it sounds awful.
I hope it works out for you and you are okay.
edit: I think anyone would gag, not just autistics, but I am sure my dad was also autistic.
I'm not surprised you felt like this, it sounds horrible, and I don't think its all because you're autistic either, it's a nasty invasive procedure, no one wants to feel as though they're choking.