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

[Gingergrrl]

Grogginess, headaches, fatigue for some time afterward. I had Propofol--but, of course, that is an individual response.

I just looked at the ER protocol from the mastocytosis society which says that Propofol is generally well tolerated in patients like me. Can you remind me, when you had Propofol for the colonoscopy, were you intubated or was it given as monitored anesthesia through an IV in your hand but you were breathing on your own?

There are preps without dyes and even ascorbic acid given on the right dosing schedule will do the trick. It may also be possible to do the prep over several days to avoid taking in too much fluid at once. That would mean longer "fasting" on things like chicken broth, electrolyte drinks and jello though. I did the prep over two days which meant 2 liters per day.

The doctor I talked to about the procedure fully understood that I was allergic to dyes and said I could use Miralax as the Prep and drink coconut water. I just don't know if I would be allergic to anything in the Miralax and will have to test it out in advance. I know I am okay with coconut water. I am not sure how many liters of fluid would be required and if it was two liters (8 cups) I could force myself to drink that over a 24-hour period if I had to but it would be challenging. It is was more than that, I would have to split it into two days. I have no problem with fasting, or with just having broth or coconut water. I went for about two weeks without food in 2015 when I was allergic to everything I ingested (but had water) and it was okay.

That is a very important question. My ideal would be twilight sedation with an anesthesiologist but that may not be offered as insurance may only pay for one if you have full anesthesia. That would be my choice as when I had twilight sedation before, I didn't have after effects, but, I was also fully awake because the nurse anesthesiologist present didn't give me enough sedation.

For me twilight sleep like Versed or an IV Benzo with an anesthesiologist would be the ideal scenario as well. Wasn't Katie Couric awake for her procedures and talking to the doctor (in the video)?

I have always chosen a hospital setting as with all the weird things I have going on I wanted to be close to full hospital services if there were a problem. I have never heard of a colonoscopy being done in a doctor's office, but rather a clinic or hospital.

So were you actually admitted to the hospital as an inpatient or was it an outpatient surgical center that was connected to a hospital? The infusion center (where I get IVIG, etc) is outpatient but it is technically part of a hospital and about 5 min from the ER. But the doctor who I'd tentatively have do the colonoscopy is affiliated with a totally different hospital.

I think to make this choice it is important to have an idea of your risk factors. For myself, since I have had polyps removed on every colonoscopy I've had, the risk is worth it is you don't want polyps growing in your colon. It is also important to learn how experienced the doctor is and what their reputation is. The doctor I just had was very experienced and had an excellent CV.

I have no idea if I have polyps since I have never had a colonoscopy but my mom would have assumed that she did not have polyps either (and when she was diagnosed with stage 4 colon cancer, the tumor was already blocking 3/4 of her colon).

I need to talk to the doctor that I'd planned to have the procedure with and I liked her b/c she was one of the few doctors who actually read the ER packet that I brought from the mastocytosis society (I saw her several years ago and was allergic to everything at that point, unlike now). I am going to type up all my questions and contact her office and see if there is a way to e-mail them to her. If not, I would be willing to make an appt with her to discuss all of this in person. I want to get as much info as I can.

 

[Sushi]

Can you remind me, when you had Propofol for the colonoscopy, were you intubated or was it given as monitored anesthesia through an IV in your hand but you were breathing on your own?

I've never heard of anyone being intubated for a colonoscopy. You are only "under" for a very short time--so no, I wasn't intubated but had full monitoring: BP, HR, O2, and I think EKG though don't remember that for sure. Yet the anesthesiologist told me that I had had some PACs (premature atrial contractions--quite normal) so there must have been an EKG running.

The doctor I talked to about the procedure fully understood that I was allergic to dyes and said I could use Miralax as the Prep and drink coconut water. I just don't know if I would be allergic to anything in the Miralax and will have to test it out in advance.

For me, Miralax was part of the problem I think--not allergic, but I got PACs and tachycardia during the prep and when I've taken it before I didn't feel well on it.

For me twilight sleep like Versed or an IV Benzo with an anesthesiologist would be the ideal scenario as well. Wasn't Katie Couric awake for her procedures and talking to the doctor (in the video)?

She was, but since it was on television, paying for an anesthesiologist wouldn't have been a problem.

So were you actually admitted to the hospital as an inpatient or was it an outpatient surgical center that was connected to a hospital?

Outpatient in a gastro procedures section of the hospital.

my mom would have assumed that she did not have polyps either (and when she was diagnosed with stage 4 colon cancer, the tumor was already blocking 3/4 of her colon).

Yes, that is the problem, you don't know unless you have an established history. Unfortunately your Mom did have a least one polyp that grew into a tumor and there is a familial risk factor.

I want to get as much info as I can.

Very important as you have unusual risk factors. That is why my gastroenterologist said that I needed an anesthesiologist monitoring me as the person who is actually doing the procedure (the gastro) can't monitor all your vital signs and a nurse might not be qualified enough to take the right actions in a person with a complicated medical history.

 

[Gingergrrl]

I've never heard of anyone being intubated for a colonoscopy. You are only "under" for a very short time--so no, I wasn't intubated but had full monitoring: BP, HR, O2, and I think EKG though don't remember that for sure. Yet the anesthesiologist told me that I had had some PACs (premature atrial contractions--quite normal) so there must have been an EKG running.

Thanks for clarifying and I did not think that you (or anyone) would be intubated or have general anesthesia for a colonoscopy but I was starting to doubt myself. I have never been intubated in my life and all my prior surgeries were with monitored anesthesia. It sounds ideal to have monitored anesthesia or twilight sleep with an anesthesiologist present. This is what I will try to find.

For me, Miralax was part of the problem I think--not allergic, but I got PACs and tachycardia during the prep and when I've taken it before I didn't feel well on it.

So in retrospect (or maybe even at the time?) you felt you got PAC's and tachycardia from the Miralax itself? I would assume that you have to ingest a large amount of Miralax for the Prep which concerns me. I do well with smaller doses of meds than the average person and even though I have never taken Miralax, I would imagine that I could tolerate a small dose of it. But to take a massive dose of it (even if I am not allergic) scares me!

She was, but since it was on television, paying for an anesthesiologist wouldn't have been a problem.

I knew there was no issue re: payment, I just couldn't remember if she was awake and talking for the entire procedure or if they showed her talking and then skipped ahead to when it was all over.

Outpatient in a gastro procedures section of the hospital.

I wonder if they do that here? I once had a dentist (incorrectly) tell me that he could not even clean my teeth (because I have MCAS) and that I must see a hospital dentist. So if there are hospital dentists, there must be colonoscopies done in the outpatient part of the hospital like you had.

Yes, that is the problem, you don't know unless you have an established history. Unfortunately your Mom did have a least one polyp that grew into a tumor and there is a familial risk factor.

Absolutely and there is a huge risk for me and my sister now. The very first day my mom was in the hospital and my sister and I were on speaker phone with 3-4 different doctors (before we got there in person), they told us that we must not wait until age 50 to get a colonoscopy b/c we were now high risk.

Very important as you have unusual risk factors. That is why my gastroenterologist said that I needed an anesthesiologist monitoring me as the person who is actually doing the procedure (the gastro) can't monitor all your vital signs and a nurse might not be qualified enough to take the right actions in a person with a complicated medical history.

This is what I now want. The doctor I saw was a colo-rectal doctor/surgeon (not a gastro) but she does colonoscopies all the time. I am not at all concerned about her skill but am concerned about the anesthesia and agree that a nurse might not be qualified enough to make decisions (although they might, it is hard to know).

 

[Sushi]

Thanks for clarifying and I did not think that you (or anyone) would be intubated or have general anesthesia for a colonoscopy

I'd guess half or more patients have general anesthesia. I had a general for this last one and also for earlier ones and everyone in the prep room was getting a general. But just because you have a general anesthesia doesn't mean that they intubate you.

So in retrospect (or maybe even at the time?) you felt you got PAC's and tachycardia from the Miralax itself? I would assume that you have to ingest a large amount of Miralax for the Prep which concerns me. I do well with smaller doses of meds than the average person and even though I have never taken Miralax, I would imagine that I could tolerate a small dose of it. But to take a massive dose of it (even if I am not allergic) scares me!

I don't think I got PACs and tachy from the Miralax itself but from the effect it had on electrolytes and the dehydration of the prep clean out itself. It didn't look like a massive dose of Miralax but it must be a lot more than a normal dose to clean you out the way it does.

So if there are hospital dentists, there must be colonoscopies done in the outpatient part of the hospital like you had.

I think that many hospitals would have a gastro procedure section attached to the hospital. The first place that I had a colonoscopy, the gastro procedure building was right next to the hospital and easily accessible.

It sounds ideal to have monitored anesthesia or twilight sleep with an anesthesiologist present. This is what I will try to find.

That may not be possible. At least it was presented to me that in order for insurance to justify paying for an anesthesiologist, you would have to have a general anesthesiologist. Otherwise there would be a nurse anesthesiologist for the other option--twilight sedation.

 

[Gingergrrl]

But just because you have a general anesthesia doesn't mean that they intubate you.

That's what I thought but I was starting to really confuse myself!

I don't think I got PACs and tachy from the Miralax itself but from the effect it had on electrolytes and the dehydration of the prep clean out itself. It didn't look like a massive dose of Miralax but it must be a lot more than a normal dose to clean you out the way it does.

I am going to test out a small dose of Miralax soon to see how I tolerate it (way in advance of arranging the colonoscopy). I am taking a new iron supplement that is causing some constipation so I tried a very small dose of a laxative today (not Miralax b/c I don't have any) and I only take the child dose for 6-11 year olds! I cannot imagine what the large colonoscopy dose would be like and it really scares me.

I think that many hospitals would have a gastro procedure section attached to the hospital. The first place that I had a colonoscopy, the gastro procedure building was right next to the hospital and easily accessible.

I will find out for sure.

That may not be possible. At least it was presented to me that in order for insurance to justify paying for an anesthesiologist, you would have to have a general anesthesiologist. Otherwise there would be a nurse anesthesiologist for the other option--twilight sedation.

I think my preference would be for Twilight Sleep with the nurse anesthesiologist vs. to have general anesthesia if I do not need it (and don't know how I might react to it). I assume Twilight Sleep is an IV Benzo like Versed which I know I am okay with. This whole thing is really stressing me out and making me not want to even do the colonoscopy but I know I need to do it .

 

[Sushi]

I cannot imagine what the large colonoscopy dose would be like and it really scares me.

Here is what it does--any liquid you drink comes out the other end about 30 seconds later--like pouring water into a bucket with a hole in it! The goal is for everything to come out like clear water. But electrolyte imbalance is something to be cautious about. I was drinking electrolyte fluids and thought I had done enough to balance it.

I assume Twilight Sleep is an IV Benzo like Versed which I know I am okay with.

The one time I had the twilight sedation it was an IV cocktail of Versed, Fentanyl, and something else. The problem was that I wasn't in twilight land at all--I was totally awake and had to keep asking for more meds because of the pain. I wan't impressed! Edited to add: another reason for adequate sedation is because they don't want you to move for obvious reasons, and if you feel pain you could unintentionally flinch.

This whole thing is really stressing me out and making me not want to even do the colonoscopy but I know I need to do it

Try not to let it stress you. You can try out the laxative ahead of time. It is an unpleasant procedure (because of the prep), but once you know what to expect and have your supplies lined up, (and set up your bathroom as a place to spend a few hours!) it is just another thing to get through. The procedure itself is very quick, and though there could conceivably be risks, they don't seem to be common if you go to a very good facility and have a very experienced doctor.

 

[Gingergrrl]

But electrolyte imbalance is something to be cautious about. I was drinking electrolyte fluids and thought I had done enough to balance it.

What kind of electrolyte fluids were you drinking during your prep? I cannot drink Gatorade (or similar drinks) b/c of the dyes so the doctor I consulted with (but not certain yet if she is the one I will do the future colonoscopy with) told me to drink coconut water (since I tolerate it well). I suppose I could also drink plain water and take salt stick or electrolyte tablets?

The one time I had the twilight sedation it was an IV cocktail of Versed, Fentanyl, and something else. The problem was that I wasn't in twilight land at all--I was totally awake and had to keep asking for more meds because of the pain. I wan't impressed!

I know I am okay with Versed and Fentanyl but was curious if you remember what the "something else" part of the IV cocktail was? When I had twilight sleep in the past, I was also totally out and never had an experience of being awake and having to ask for more meds (which sounds horrible)!

Edited to add: another reason for adequate sedation is because they don't want you to move for obvious reasons, and if you feel pain you could unintentionally flinch.

Thank you, and I had not thought of that, which is a really good point.

Try not to let it stress you. You can try out the laxative ahead of time. It is an unpleasant procedure (because of the prep), but once you know what to expect and have your supplies lined up, (and set up your bathroom as a place to spend a few hours!) it is just another thing to get through. The procedure itself is very quick, and though there could conceivably be risks, they don't seem to be common if you go to a very good facility and have a very experienced doctor.

It actually really is stressing me out b/c I am currently in the best health I have been in four years. If you don't look too closely, I could pass for a "normal" person right now (but anyone who knows me well would see all of the daily meds I still take and certain accommodations that I do to not trigger a POTS episode, etc). So, I don't want to purposely do anything that could cause a major allergic reaction, set-back, or anything that brings me out of this remission state. But not doing it seems bad too since I know I am at risk of colon cancer and have unexplained low iron/anemia.

 

[Sushi]

What kind of electrolyte fluids were you drinking during your prep? I cannot drink Gatorade (or similar drinks) b/c of the dyes so the doctor I consulted with (but not certain yet if she is the one I will do the future colonoscopy with) told me to drink coconut water (since I tolerate it well). I suppose I could also drink plain water and take salt stick or electrolyte tablets?

I used ElectroMix but it may not be suitable for you--check the ingredients. It is made by EmergenC. I'd think the electrolytes you are used to would work, you just need a lot of them.

I know I am okay with Versed and Fentanyl but was curious if you remember what the "something else" part of the IV cocktail was? When I had twilight sleep in the past, I was also totally out and never had an experience of being awake and having to ask for more meds (which sounds horrible)!

No I don't remember and looked up the report but it didn't list the meds. I noticed no sedation whatsoever--but then I don't sedate easily.

Thank you, and I had not thought of that, which is a really good point.

If you moved during a critical part of the procedure, I'd think there would be a greater risk of perforation.

I do to not trigger a POTS episode, etc). So, I don't want to purposely do anything that could cause a major allergic reaction, set-back, or anything that brings me out of this remission state.

Just discuss it all with the doctor and stress your history of POTS and allergic reactions. I'd think you could try most of the things ahead of time for an allergic reaction (unless there is an ingredient x in the IV cocktail) and you can take your medications up to about 4 hours before the procedure. If the medication can be taken by injection, I'd think you could take it right before the procedure as the cut off time is because it will wash through you if taken orally.

They will probably understand allergy more than POTS so you might try calling it autonomic dysfunction that is affected by electrolyte imbalance. Every hospital I've had contact with understood the basics of autonomic dysfunction. I also showed them the results of my TTT.

 

[Gingergrrl]

I used ElectroMix but it may not be suitable for you--check the ingredients. It is made by EmergenC. I'd think the electrolytes you are used to would work, you just need a lot of them.

I Googled the ElectroMix but it has Stevia which I don't like. But your post reminded me of an electrolyte mix that I used to drink called "Vitalyte". I had stopped it b/c of MCAS (back when I was allergic to everything in 2015) but when I read the ingredients now, it should not be any problem. I don't need an electrolyte mix in general but for the colonoscopy prep, I think I will order Vitalyte (plus the coconut water).

No I don't remember and looked up the report but it didn't list the meds.

No worries! When I get to that point, I will inquire exactly what is in the sedation.

If you moved during a critical part of the procedure, I'd think there would be a greater risk of perforation.

I agree and that would be horrible!

Just discuss it all with the doctor and stress your history of POTS and allergic reactions. I'd think you could try most of the things ahead of time for an allergic reaction (unless there is an ingredient x in the IV cocktail) and you can take your medications up to about 4 hours before the procedure. If the medication can be taken by injection, I'd think you could take it right before the procedure as the cut off time is because it will wash through you if taken orally.

I don't take any meds that are injections and everything is in pill form (except my IVIG & Rituximab infusions). My biggest concern is the timing/absorption of taking Cortef but I assume if I do the procedure in the morning, I could just take it after. I will definitely tell the doctor about POTS, MCAS allergic reactions, and avoiding anesthesias that block the calcium channel. If the doctor has a problem with it, then they are not the right doctor for me to do such a major procedure.

They will probably understand allergy more than POTS so you might try calling it autonomic dysfunction that is affected by electrolyte imbalance. Every hospital I've had contact with understood the basics of autonomic dysfunction. I also showed them the results of my TTT.

I think you have encountered much better hospitals than I have! I've had ER doctors admit that they never heard the term "POTS" and thought I was making up a word (which kinda shocks me how you get through med school and do not even know that POTS exists). I used to explain that I do not get adequate blood perfusion to my heart and lungs when I stand so my BP drops and then I get tachycardia to compensate.

But you would not be standing for a colonoscopy (and I have had POTS symptoms in my sleep, raising my arms, bending to pick something up, etc, and it is of course more intricate than just sitting and standing)! I need to find a doctor for the colonoscopy who is familiar with POTS & MCAS or at least very open-minded. I think the doctor I found is like that but I need to talk to her further.