Have dysautonomia, need a colonoscopy?--comments and tips

Sushi

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I'm posting about this as I have dysautonomia and had a colonoscopy yesterday. I was surprised at the level of autonomic disturbance caused by the prep (I was prescribed the NuLYTELY prep which is basically Miralax in 4 liters of water). Well, most of us know that the prep is pretty awful but we usually just consider the ghastly gastric effects. I was prepared for those but wasn't prepared for greatly increased OI, balance problems and cardiac rhythm disturbances. I think these mainly came from dehydration even though I was drinking a lot of electrolyte solutions, chicken broth etc. At one point I thought I might need a wheelchair to navigate the parking lot of the GI procedure building but some of these symptoms resolved after the non-stop diarrhea ended and I was able to walk again. I also had increased aches and pains.

At one point I realized that I was having some sort of arrhythmia (a problem I am prone to anyway) so I took an EKG using my Kardia device and emailed it to my Electrophysiologist. She emailed back (within 5 minutes!) saying that I was having premature atrial contractions and that it shouldn't be a problem for the colonoscopy. She also said that I could take an extra dose of one of my meds. I showed the EKG (which was on my phone) to the anesthesiologist and the gastroenterologist and they were both enthralled with this marvelous new bit of technology and wanted to try it for themselves!

Once I got to the GI procedure department and was hooked up to IV saline, I started feeling much better. They hooked me up to monitors and my BP and HR were both significantly elevated. After that, the procedure itself was totally smooth as they gave me propofol and I was asleep throughout. The anesthesiologist told me that I had had some more premature atrial contractions during the procedure but that my BP and HR had remained steady and afterwards I saw they they had returned to my normal range.

Does anyone else with dysautonomia have comments about their colonoscopy? The question is what to do differently and I don't have an answer to that, but am very glad that the doctors involved realized (and took seriously) that I had dysautonomia.
 

bertiedog

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@Sushi I don't have any experience of a colonoscopy but just wanted to say I am glad you are a lot better today and that the doctors took your issues seriously and responded accordingly.

I guess the electrolyte disturbances hit the adrenals which perhaps meant you had high levels of adrenaline which would push your HR and BP up. This would tie in with you feeling better once they got the saline into you. I have to take the odd dose of fludrocortisone when we have lots of hot weather which makes me sweat a lot and I know it makes me feel terrible until I work out what is going on. I also need a low dose of Propananol to help with excess adrenaline and I also find that very effective.

Hope you get some helpful replies.

Best Wishes

Pam
 

Shoshana

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I am very glad you got through all of that, and thank you for sharing all of that with us, @Sushi.
I know I had extreme weakness and dizzy, etc, as a much bigger problem with the prep, than any of the intestinal/gastro difficulties, and it was difficult to get through that beforehand, but mine too, was fine, once I was there.
 

Sushi

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I know I had extreme weakness and dizzy, etc, as a much bigger problem with the prep, than any of the intestinal/gastro difficulties, and it was difficult to get through that beforehand, but mine too, was fine, once I was there.
Interesting that you had a similar experience. Today a nurse called me to check on how I was doing and told me to drink a large volume of fluids today to help get over the weakness. I forgot to mention, but I was also freezing cold during the prep.
 

Mel9

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Interesting that you had a similar experience. Today a nurse called me to check on how I was doing and told me to drink a large volume of fluids today to help get over the weakness. I forgot to mention, but I was also freezing cold during the prep.

I had an extreme reaction to this prep and I later discovered I was allergic to PEG (polyethylene glycol) which explained my reaction I think.
 
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Just for a more complete sample: i had a colonoscopy last year and didn't notice any particular extra OI symptoms beforehand. The sedative hit me hard, however, and I'd been fasting and not having coffee so I felt especially bad afterward!
 
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bertiedog

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I also need a low dose of Propananol to help with excess adrenaline and I also find that very effective.
I should have added I take this everyday before I get up. My normal dose is just 10 mg and take the same dose again when the weather is warm or if I am having to go to shops for more than 20 minutes. I have been taking this drug for 20 years without any ill effects and have never had to raise the dose to more than 20 mg.

My headache consultant once gave me a slow release version of 80 mg for migraine prevention but on that dose I had horrible insomnia and found I was unable to sleep at night so as usual benefits are very much dose dependent.

Pam
 

Eastman

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@Sushi

Off-topic but may I ask whether you find the Kardia device reliable? Did you calibrate it against a lab to verify its results?

Also, do you happen to know whether it works with an Android 4 smartphone (official requirement being Android 5 and above)?
 

Learner1

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@Sushi So sorry you had to go through this. As @Mel9 pointed out, the prep products may have allergens. I researched all of them and I am allergic to every single one due to my corn allergy. The only way of prepping I could think of would be a lot of magnesium and vitamin C, but in your case, overloading on the magnesium might not be wise.

I opted for the fecal occult blood test.

Hope you feel better soon.
 

Wayne

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wasn't prepared for greatly increased OI, balance problems and cardiac rhythm disturbances
Hi @Sushi,

Just to mention, enemas (generally speaking) stimulate the vagus nerve. The vagus nerve runs through the heart, and many people are unable to do enemas because of this stimulation, which can lead to various kinds of arrhythmias. This same kind of stimulation is why enemas can also relieve depression for many people.

Many people are simply unable to do colonoscopies because of their extreme sensitivities and/or weaknesses. I put myself in that category, and have long felt the risk/reward ratio just doesn't work for me. I'm happy to hear (if i read it right) that you've stabilized. And if so, that the worst of your ordeal is now over Best... :hug:
 

erin

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My prep was pills this time, I had to take 80 laxative pills, 10 of them in every 20 minutes and I could tolerate them much better than the horrid liquid stuff in my previous colonoscopy. I put the details in another thread I will link it tomorrow, I am so tired right now.
 

Sushi

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Off-topic but may I ask whether you find the Kardia device reliable? Did you calibrate it against a lab to verify its results?
Also, do you happen to know whether it works with an Android 4 smartphone (official requirement being Android 5 and above)?
Yes, it is reliable and FDA approved and I have calibrated it against a 12 lead EKG in my cardiologist's office. What isn't reliable is its computer generated interpretation--unless it says normal. Normal is reliable but it's interpretation of arrhythmias isn't as it just calls them all "possible Afib." But you can email the strip to your doctor or pay $10 for a company cardiologist to read it. I don't know whether it would work with an Android 4--you would probably need to phone and ask. My cardiologist likes the device and scrolls through my recent EKG's when I have an appointment. One of the best electrophysiologists in the US is fine with his post-ablation patients sending in Kardia strips rather than wearing a monitor.
he prep products may have allergens. I researched all of them and I am allergic to every single one due to my corn allergy. The only way of prepping I could think of would be a lot of magnesium and vitamin C, but in your case, overloading on the magnesium might not be wise.
I would guess you could achieve the same results with just Vitamin C dosed appropriately. One doc had me do this but I did get a lot of cramps from it.
Just to mention, enemas (generally speaking) stimulate the vagus nerve.
I was thinking that all those bowel eruptions might be giving the vagus nerve a thrashing!

I am not back to baseline but doing fine. I'll be happy when I can resume my anticoagulant this evening.
 

Gingergrrl

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I'm posting about this as I have dysautonomia and had a colonoscopy yesterday. I was surprised at the level of autonomic disturbance caused by the prep (I was prescribed the NuLYTELY prep which is basically Miralax in 4 liters of water).
Thank you for posting this and I am also concerned about having a (future) colonoscopy with my history of both POTS and MCAS. I know we discussed this in the other thread but can you remind me, does the prep require that you drink 4 liters of fluid? I would never be capable of this and am hoping to do a prep that only requires two liters of fluid maximum (b/c of my history of third spacing with too much fluid in a short period of time).

At one point I realized that I was having some sort of arrhythmia (a problem I am prone to anyway) so I took an EKG using my Kardia device and emailed it to my Electrophysiologist. She emailed back (within 5 minutes!) saying that I was having premature atrial contractions and that it shouldn't be a problem for the colonoscopy.
Would there be any purpose in getting the Kardia device if you have never had a-fib or an arrhythmia? When my POTS was at it's worst with tachycardia in the 160's and 170's all throughout the day (in 2013), my HR never left sinus rhythm. So I was not sure if this device would be useful to me even though it sounds amazing!

Does anyone else with dysautonomia have comments about their colonoscopy? The question is what to do differently and I don't have an answer to that, but am very glad that the doctors involved realized (and took seriously) that I had dysautonomia.
I would very much like to hear more about this, too, before I ultimately schedule my colonoscopy later this year.

I had an extreme reaction to this prep and I later discovered I was allergic to PEG (polyethylene glycol) which explained my reaction I think.
Wow, @Mel9, that is so scary! Can you say more about your allergic reaction to PEG (polyethylene glycol)? This scares me as well with my history of allergic reactions. The prep I assume I would use is Miralax (and coconut water for the electrolyte part) but Miralax has PEG for the active ingredient and I have never taken it before (that I am aware of).

@Sushi So sorry you had to go through this. As @Mel9 pointed out, the prep products may have allergens. I researched all of them and I am allergic to every single one due to my corn allergy.
Does Miralax contain corn? Sorry if stupid question! I am not allergic to corn but don't know about the active ingredient, PEG.

I opted for the fecal occult blood test.
That was going to be my original plan in three years when I turned 50 but after my mom passed away from colon cancer, the doctors said that my sister and I are high risk and we should schedule a colonoscopy this year and not wait.

My prep was pills this time, I had to take 80 laxative pills, 10 of them in every 20 minutes and I could tolerate them much better than the horrid liquid stuff in my previous colonoscopy. I put the details in another thread I will link it tomorrow, I am so tired right now.
I read about your prep in the other thread but I am not sure if that option is available in the US? Was it challenging to swallow 80 pills?! My problem (b/c of potential allergic risk) would be that I'd need to start with a toothpick amount and gradually build up. If I drank the eight cups of prep solution, or took all the pills, very quickly and then was allergic, I'd be screwed!

I am not back to baseline but doing fine. I'll be happy when I can resume my anticoagulant this evening.
I'm sorry to hear that and hope you feel better soon. I'm trying to spread the word about colon cancer screenings, so no one else has to suffer like my mom did, even though I have not yet had a colonoscopy myself.
 

Gingergrrl

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Sushi

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does the prep require that you drink 4 liters of fluid? I would never be capable of this and am hoping to do a prep that only requires two liters of fluid maximum (b/c of my history of third spacing with too much fluid in a short period of time).
That is something you would have to discuss with your gastroenterologist. Most preps require that you drink a large volume of fluids because it takes a lot of fluid to wash through the colon until it is coming out clear. It was until the last few glasses of liquid that I got the clear effect. I'd guess that your doctor will be able to come up with a work around though because of your special circumstances.
Would there be any purpose in getting the Kardia device if you have never had a-fib or an arrhythmia? When my POTS was at it's worst with tachycardia in the 160's and 170's all throughout the day (in 2013), my HR never left sinus rhythm. So I was not sure if this device would be useful to me even though it sounds amazing!
If you are staying in rhythm there would be no need for a device like Kardia. A simple HR monitor would give you the information that you need. I think it is good to know though that for some, the prep can exacerbate dysautonomia. I also had tachycardia which was uncomfortable.
 

rosie26

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@Sushi I need to have a colonoscopy in the next few years and am anxious about taking the prep. I get weakness easily with my ME and I think the prep will be very hard on me. How long does the diarrhea go on for? Is it just for a couple of hours or more than that?
 

Learner1

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Thanks for the links and it's not something I would ever choose to take outside of colonoscopy prep. As long as I am not allergic to it, I think it will be okay for a one time use since I am a high risk for colon cancer.
Given the nervous system issues many of us have dealt with, it might be wise to look elsewhere.

I am a cancer survivor and celiac and at a higher risk for colon cancer and want to be careful not to be unwise about this. My doctors measure a battery of cancer markers and do a fecal occult blood test.

They were concerned about the mast cell activation in my gut and doing a colonoscopy, which could cause perforations, etc. These are worthwhile reads...

https://www.medpagetoday.com/gastroenterology/generalgastroenterology/56204

http://blogs.harvard.edu/billofheal...lonoscopy-the-fda-approves-the-pillcam-colon/

https://robertclaremd.com/im-skeptical-about-screening-colonoscopies/

If I had to do a colonoscopy, I would do a natural prep, with vitamin C, bone broth, vegetable broth, etc. It is not worth the risk of putting anything into my body that could trigger some new unwanted health problem.