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

[Sushi]

How long does the diarrhea go on for? Is it just for a couple of hours or more than that?

Ah, more than that.

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.

Aside from the Miralax, I only used "foods"--vegetable and chicken broth, jello made with organic fruit juice and no sugar, coconut water.... The anesthesiologist did say that my elevated BP and HR when they first hooked me up was something that they often saw.

 

[Gingergrrl]

My doctors measure a battery of cancer markers and do a fecal occult blood test.

I appreciate the info but am not trying to decide if I should do a colonoscopy vs. a different test at this time. I discussed w/my MCAS doc and the colorectal doc/surgeon who will do the procedure. My biggest concerns are not being allergic to the prep, not having an anesthesia that blocks the calcium channels, and not having too much fluid b/c of my risk of third spacing and prior episode of pulmonary edema from one liter of saline. My concerns are probably different than others and most people want extra saline but my doctors do everything possible to reduce the amount of fluid I receive in a short period of time (both infusions and oral fluids).

 

[Sushi]

my doctors do everything possible to reduce the amount of fluid I receive in a short period of time (both infusions and oral fluids

Just brain storming but maybe they could have you do a prep over several days of clear liquid--that might allow you to take in less liquid each day and still clear your colon but slowly over a longer period.

 

[Gingergrrl]

Just brain storming but maybe they could have you do a prep over several days of clear liquid--that might allow you to take in less liquid each day and still clear your colon but slowly over a longer period.

It's possible and I plan to talk to the doctor about it further. Since both of my infusion treatments are in May, the earliest I would start pursuing this is in June but realistically I will wait until my dog is done with her PT from back surgery (in July). My goal is to do it by the end of 2018.

 

[Misfit Toy]

The prep is awful. I would think just the whole experience would cause OI. It wipes you out, literally. I have had it several times. I am always wiped out. I know now that I am older and have some sort of dysautonomia I would be way worse.

 

[Sushi]

The prep is awful.

I think it is helpful to go into it realizing that you are going to have one or more horrible days and just mentally write them off. This may well be TMI but I regretted not having bought some Depends!

 

[Gingergrrl]

This may well be TMI but I regretted not having bought some Depends!

It's not TMI and honestly that is good to know. The whole prep scares the shit out of me. OMG, I wrote that being serious and then realized the double meaning LOL

 

[Sushi]

The whole prep scares the shit out of me. OMG, I wrote that being serious and then realized the double meaning LOL

I wish that would work as a prep! Incidentally, the protocol I did had me drink 2 liters late one afternoon/evening and two more the next morning.

 

[Jennifer J]

Thank you for this thread. Sorry you went through all you did @Sushi! I'm glad they were able to take care of you as they did and you could finish the procedure. Hope you're recuperating alright and back to base soon.

I can't have a colonoscopy and am very concerned about it. I have problems due to my diabetes insipidus, low sodium and desmopressin. It isn't something I've had the health to sort out or get to appointments. The last time I saw an Endocrinologist he recommended that I don't have a colonoscopy for those reasons. If he has ideas of a way I don't know, I'm unable to get back to him or pursue it due to all.

Also can't do any anesthesia and I'm very allergic to Miralax and similar used medication and almost everything these days. I'm just hoping I'll be alright til something changes for the better for me. Or I'll just be alright. It does have me very concerned though. Someday I hope to have enough ability to at the very least do the fecal test.

Thank you for what everyone has shared. It helps to hear the experiences, knowledge and ideas.

 

[Mel9]

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).



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!



I would very much like to hear more about this, too, before I ultimately schedule my colonoscopy later this year.



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).



Does Miralax contain corn? Sorry if stupid question! I am not allergic to corn but don't know about the active ingredient, PEG.



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.



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'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.

Hypersensitivity reactions to PEG or PPG are not uncommon. Nearly every skin cream seems to contain these to help ingredients penetrate the skin (and they are often not mentioned on the label).

If you never have reactions to things like face creams, lip sticks, deodorants, shampoos etc you are probably not allergic to these glycols

but if you are allergic, try a patch test with a PEG containing product (eg hydrogel ‘wound cream’) and wait 24 hours to see if it causes a raised extremely itchy sore.

 

[Shoshana]

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.

I just wanted to be clear, that for me personally, I do not think it was the actual prep, and it was not the Mirilax, which caused challenges for me,
in my case, I believe it is going the full day and the 2 nights, on clear fluids only.... that does not give me enough protein, so I suffered, but for me, in my case, it was worth it.

I know I am not allergic to the prep, (even though I have MANY bad reactions to many other things)
because I do take it other times, as I need to take something.

I do take plenty of broths, when I do the prep. (and all the time)
I will also do more research before my next one, about other possible preps,
but one thing I do know, is that IF someone is having a colonoscopy, then the more clear and clean out of the colon can be done before it, the better the results.
The entire goal is for them to not miss seeing any problems, while they are small, and easily treatable, and small problems could easily remain hidden from view, during a colonoscopy, IF the colon is not cleaned out enough.

SO I will check out other preps, for myself, but if/when, I have another colonoscopy, I will accept discomforts from the preps, in order to get the full benefit , from going through the risks of a colonoscopy.
Because, I repeat, I am not allergic to the prep. So it is uncomfortable but manageable, and my risks without one, are worse.

 

[Shoshana]

@rosie26
For me, it does not go on for hours, and it was not a big problem. I did feel significantly more weakness, which was difficult, so I stayed in bed, but the loose cleanout was not very problematic, for me.
I eat very lightly, the day before the prep, especially the supper and eveing before the prep day, with choosing particular proteins and NOT red meat or long-digesting foods, so that may help me, to have less diahrrea, I do not know.

@Gingergrrl

Since you will not be eating any foods, during ANY prep,
you MIGHT possibly be surprised by being possibly able to drink more liquids, than you expect. That is what I find, but may well be very different for you or anyone else.

 

[Shoshana]

I have very severe CNS problems, and very severe CFS, and many med allergies,
so I was very worried about ANY anesthesia's,
however, in my case, I have HAD to have 2 surgeries, and so i found out then, that I tolerated the propofol , and I also tolerated the versed and fentanyl, for past colonoscopies, though I would not do versed again, if possibly avoidable.

I am sure that some people cannot do them, but I was surprised I could do those.

I did try doing colonoscopies without anesthesia at all, a few times, using breathing techniques, etc, but that did not work out well for me.

Just sharing, in case my info is helpful to anyone else. I do not advise others to make the decisions I felt I had to make for myself.

 

[Shoshana]

Hypersensitivity reactions to PEG or PPG are not uncommon. Nearly every skin cream seems to contain these to help ingredients penetrate the skin (and they are often not mentioned on the label).

If you never have reactions to things like face creams, lip sticks, deodorants, shampoos etc you are probably not allergic to these glycols

but if you are allergic, try a patch test with a PEG containing product (eg hydrogel ‘wound cream’) and wait 24 hours to see if it causes a raised extremely itchy sore.

This seems like excellent info.
I also wonder, (I do not know) if one could try just a small bit of Mirilax, such as 1/4 scoop in a glass of water, or even less, if it is the first time they ever have had it, way ahead of time, to see if one tolerates it, before doing any prep with the larger amounts of it. I would do that with anything I was concerned about. IF I had enough reason to risk doing it at all.... (which for me, I do) Far ahead of time, I tried a miniscule amount, to "test" it, and then if fine, a larger but still small amount to test it....

But perhaps that is totally NOT advisable, for some people, and/or, for some items, if one might have a full out allergic response, such as if one has had an allergic reaction to something very similar, and it might be much better to do it the way Mel9's post said, a skin patch test.

If I believe I am probably not allergic to something, but am still frightened by the possibility, I do the teensy bit test, but of course, that is NOT okay for some people, with some items!

Again, just sharing, in case it helps someone else, to consider their own options.

 

[erin]

This was my prep:

2 measures of (6gr) Magnesie Calcinee Saba mixed with water at 12 am and 6 pm 2 days before the procedure. I was advised to have normal food, no restrictions.

(However I can't have normal food anyway and I have restrictions; can't eat dairy and gluten. So I had my usual gluten and dairy free diet. Tried to eat lightly. I was fine all day with the above laxative twice. Went to bed, had a good sleep, then I had to kind of rush to the toilet twice; 6.30 am and 7.30 am. That was fine -not crampy, not so messy just fine. Sorry about the grossness, talking about laxatives unfortunately)

A day before procedure, I started to diet, clear juices of apple, tea, plenty water, clear chicken broth and I had 2 lemon jellos all day. I took X-M 20 g 80 tablets. (two boxes) I had to start taking 10 pills (very small pills) at 12 am and every 20 minutes after I finish the complete dose of 80 tablets/ 2 boxes. I finished them all by 2:40 pm. This was not a problem, its much easier than drinking horrid bottles of laxatives.

(After medication waves of diarrhea started at 9 pm. It wasn't a bad diarrhea, no cramping non-violent. Then, several times until 10:30 pm and stopped. I was tired as I was on liquids and not properly nourished so I went to bed. Another bout of diarrhea between 10:30 and midnight followed. Awaken at 3:30 am with a slight spasm 2 more visits I was done and went back to sleep. This was so easy compared to my previous colonoscopy prep which was two bottles of laxatives and continuous violent cramping diarrhea.)

I had water only until 11 am. and my procedure was at 1:30 pm. I was given a mild sedative and anesthetics that I have no note of their names unfortunately. Normally they also give a pain killer (buscopan) but they didn't cause they didn't need to do a biopsy this time. Very quick, pain free. I was very thirsty and hungry afterwards. This was the only hard bit for me.

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 don't know what's available in the US. The pills are tiny, half a rice grain size. No problem to swallow 10 of them in one go. Also this requires a lot of water drinking which is not too bad. Because when you have to drink a liquid prep, usually substantial amount of liquid it is not easy to drink water afterwards.

I have allergies to many medicine, usually half the dose that is required is more than enough for me. But this prep was fine.

 

[Shoshana]

For brainstorming, I know next to nothing about colonic irrigation, but I wonder if it could be used for a prep.?

 

[Wayne]

I was surprised at the level of autonomic disturbance caused by the prep

I hope this isn't too much of a diversion, but have a brief FWIW comment. I have severe hyperacusis, and yesterday experienced an acoustic trauma from the sound of packing tape. It really affected me, and this morning, noticed my dysautonomia is much more fragile than normal. Seems likely just about any kind of trauma can adversely affect the ANS and dysautonomia.​

 

[Sushi]

The entire goal is for them to not miss seeing any problems, while they are small, and easily treatable, and small problems could easily remain hidden from view, during a colonoscopy, IF the colon is not cleaned out enough.

This is true. The polyp that the doctor found was very small and embedded in the mucous tissue. It would have been very hard to see if the colon was not very clean.

 

[Gingergrrl]

Hypersensitivity reactions to PEG or PPG are not uncommon. Nearly every skin cream seems to contain these to help ingredients penetrate the skin (and they are often not mentioned on the label). If you never have reactions to things like face creams, lip sticks, deodorants, shampoos etc you are probably not allergic to these glycols

Was your reaction to a skin cream with this ingredient or did you not know yet that you were allergic to it and drank the Miralax prep and had a severe allergic reaction? I am so sorry either way!

I don't appear to be allergic to any skin creams, deodorants, shampoos, etc, once my MCAS went into remission BUT, I continue to use products that are either "fragrance free" or "free and clear" wherever possible and honestly do not know if I use any products that contain PEG or PPG. I plan to investigate this and it is very helpful info. Thank you so much, Mel.

but if you are allergic, try a patch test with a PEG containing product (eg hydrogel ‘wound cream’) and wait 24 hours to see if it causes a raised extremely itchy sore.

Thanks and that is a great idea.

is that IF someone is having a colonoscopy, then the more clear and clean out of the colon can be done before it, the better the results. The entire goal is for them to not miss seeing any problems, while they are small, and easily treatable, and small problems could easily remain hidden from view, during a colonoscopy, IF the colon is not cleaned out enough.

That is a REALLY good point and since I will be doing this, I want to do it right and do not want them to miss any small polyps that could be hiding. I don't want to go through the whole prep for nothing! I want to advocate to prevent what happened to my mom from happening to others but feel like I will be a better advocate once I have actually done a colonoscopy myself. It is not well known here that if you are high risk for colon cancer (like I am now) that you do not wait until age 50 as insurance companies advise.

@Gingergrrl Since you will not be eating any foods, during ANY prep, you MIGHT possibly be surprised by being possibly able to drink more liquids, than you expect. That is what I find, but may well be very different for you or anyone else.

It's hard to say but in general, I do not do well with a lot of fluid (regardless if I have eaten food or not). My MCAS doctor said the perfect amount for me is 6-8 cups per day and he disagrees that all patients with POTS need to do "fluid loading" especially if you are at risk of third spacing. I don't think in my case, it would change based on how much food I ate (but you never know)!

I have HAD to have 2 surgeries, and so i found out then, that I tolerated the propofol, and I also tolerated the versed and fentanyl, for past colonoscopies, though I would not do versed again, if possibly avoidable.

I'm pretty sure that propofol, versed and fentanyl are all viewed as generally safe by the Masto Society. I just have to confirm that Propofol does not block the calcium channels. I have no concerns about Versed and have no problems with benzos.

I did try doing colonoscopies without anesthesia at all, a few times, using breathing techniques, etc, but that did not work out well for me.

Eek... That sounds horrible and I don't think I am brave enough for that.

I also wonder, (I do not know) if one could try just a small bit of Mirilax, such as 1/4 scoop in a glass of water, or even less, if it is the first time they ever have had it, way ahead of time, to see if one tolerates it, before doing any prep with the larger amounts of it.

I was actually thinking this exact same thought. I've never taken Miralax but as long as it's dye-free, I'd feel comfortable to "test" a small amount (long before the actual procedure) just to make sure that I am not allergic to it.

But perhaps that is totally NOT advisable, for some people, and/or, for some items, if one might have a full out allergic response, such as if one has had an allergic reaction to something very similar, and it might be much better to do it the way Mel9's post said, a skin patch test.

I think it is a great idea, and Mel's idea, too. I will definitely test it out long before the real prep/procedure to confirm that I am not allergic.

 

[kangaSue]

A low volume prep using PEG + ascorbic acid (Moviprep) has a similar efficacy to the higher volume brews.
https://www.ncbi.nlm.nih.gov/pubmed/18190651
http://www.norgine.com.au/our-products/moviprep