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

[rosie26]

@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.

@Shoshana I was curious about this because it sounded for some that it goes on for many hours. I remember when my mother had a colonoscopy a few years ago we both wondered when it was all going to happen, she was drinking lots of fluids and had taken the preps and nothing was happening. I went to bed and hoped mum would be alright and apparently it started for her in he early hours of the morning and was over in a few hours.

Good to hear your response to it and I will remember about eating lightly, etc.

 

[Gingergrrl]

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

Thank you for this info, KS, and I bookmarked it with all my other colonoscopy info for the future.

 

[Gingergrrl]

I have another question for the colonoscopy experts in this thread... I was curious, for someone like me who takes Cortef, where it would be life threatening to miss (b/c of adrenal insufficiency), would you need to do the prep a certain number of hours away from the Cortef in order to make sure it has been fully absorbed?

 

[Sushi]

would you need to do the prep a certain number of hours away from the Cortef in order to make sure it has been fully absorbed?

My instructions said to take all medications no later than 6 hours before the procedure. I assumed that was because they might be washed out if taken later. If that doesn't work in your case is there any version of Cortef that you could take by injection? I had to substitute one oral drug for an injected drug, but for other reasons.

 

[Gingergrrl]

My instructions said to take all medications no later than 6 hours before the procedure. I assumed that was because they might be washed out if taken later. If that doesn't work in your case is there any version of Cortef that you could take by injection? I had to substitute one oral drug for an injected drug, but for other reasons.

That is really good info re: the procedure which had not even crossed my mind and I was asking about the prep itself? I was thinking if you took Cortef (or any oral med) within a certain number of hours of the prep then you could poop it out before it got absorbed? (trying to be polite ).

But that makes sense re: not taking it right before the procedure, too. You can get Solu-Cortef in IV form b/c I had it before my first IVIG in 2016 until we confirmed that I was not allergic to IVIG and did not need it.

 

[Shoshana]

I do not think it will be a problem, @Gingergrrl to take it in the morning, of the day you do the prep, which is mostly a liquid diet that day, ......
but you will get all of those specific instructions, closer to when you do that actual test.

 

[erin]

I'm not an expert at all, though I agree with Shoshana.

I was told to take all my medicine normally and only stop blood thinners 3 days before. Anyhow, I don't take blood thinners, I took my beta blocker and thyroid medicine in the morning 3 and 4 hours before the procedure. Told to stop everything, including water 3 hours before.

 

[Gingergrrl]

I do not think it will be a problem, @Gingergrrl to take it in the morning, of the day you do the prep, which is mostly a liquid diet that day, ...... but you will get all of those specific instructions, closer to when you do that actual test.

I know I should wait to get the instructions and not get ahead of myself (since I am not even doing the colonoscopy for a few months). The whole thing just makes me so nervous on so many levels

I was told to take all my medicine normally and only stop blood thinners 3 days before. Anyhow, I don't take blood thinners, I took my beta blocker and thyroid medicine in the morning 3 and 4 hours before the procedure. Told to stop everything, including water 3 hours before.

I don't take blood thinners so this part is not an issue for me. The med I am most concerned about is the Cortef, plus any pre-meds that might be given to prevent an allergic reaction to any part of the procedure itself. But I guess they could all be given in IV form to bypass the GI tract if necessary.

Is the entire prep usually the night before the procedure (so it is over) or is there still more prep on the day of the procedure, too?

 

[Sushi]

I know I should wait to get the instructions and not get ahead of myself (since I am not even doing the colonoscopy for a few months). The whole thing just makes me so nervous on so many levels

I don't know about the doctor you are seeing but my procedure had to be scheduled several months ahead in order to have both the gastroenterologist and the anesthesiologist there.

Is the entire prep usually the night before the procedure (so it is over) or is there still more prep on the day of the procedure, too?

It depends on how they schedule it. This last one was over two days--started about 6 pm and then again did another round of prep the next morning.

 

[Shoshana]

I have always scheduled mine to be done in the morning, (so I would not starve or spend the day in dread or feel the extra weakness all half-day )

and my prep was ALL done, on the day before, with none on the same day.
Then I would rest, all afternoon. And eat, gradually, as comfortable.

Like Sushi said, I just write the 2 days off.

"Gone Fishing" sign, on the door.
(Only kidding, on that part )

 

[Gingergrrl]

I don't know about the doctor you are seeing but my procedure had to be scheduled several months ahead in order to have both the gastroenterologist and the anesthesiologist there.

I will have to learn more about this and the doctor is a colorectal doctor/surgeon. She told me that it only takes a few weeks to book the procedure but I do not know if there is a separate anesthesiologist there in addition to her. I assume there would be, and I don't think I would be comfortable without one, but I will need to clarify this.

It depends on how they schedule it. This last one was over two days--started about 6 pm and then again did another round of prep the next morning.

I definitely prefer not to be doing two rounds of prep on two different days if there is any other option!

I have always scheduled mine to be done in the morning

and my prep was ALL done, on the day before, with none on the same day.

I agree @Shoshana and this would be my ideal scenario (to have the procedure in the morning with ALL of the prep done on the day before).

 

[erin]

I know I should wait to get the instructions and not get ahead of myself (since I am not even doing the colonoscopy for a few months). The whole thing just makes me so nervous on so many levels



I don't take blood thinners so this part is not an issue for me. The med I am most concerned about is the Cortef, plus any pre-meds that might be given to prevent an allergic reaction to any part of the procedure itself. But I guess they could all be given in IV form to bypass the GI tract if necessary.

Is the entire prep usually the night before the procedure (so it is over) or is there still more prep on the day of the procedure, too?

I took my usual daily allergy medicine (antihistamine tablet) the night before the colonoscopy. I was not given anything for the procedure apart from mild anesthetic and buscopan. This was in IV form before the procedure.

My prep was pills as I said it before; the last pills I took were at 2:40 in the afternoon and the next day 1:30 p.m. I had the colonoscopy.

I guess different preps and meds for different people.

 

[Sushi]

Just an outcome report--the pathology on the polyp that was removed: benign, follow-up colonoscopy in 5 years. Hopefully by then they will have a better prep available in the US.

 

[Sushi]

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.

They changed the age recommendation today to 45 so you might want to check that.

 

[Gingergrrl]

Just an outcome report--the pathology on the polyp that was removed: benign, follow-up colonoscopy in 5 years.

That is great news that the polyp was benign and you don't have to do this all again for five years!

They changed the age recommendation today to 45 so you might want to check that.

Thanks for alerting me to this and right after I read it yesterday, I saw a story on CNN's website about it:

https://www.cnn.com/2018/05/30/health/colon-rectal-cancer-screening-guidelines-study/index.html

In my case, we haven't even tried to get an Auth from my insurance yet b/c I have not gotten that far. I still plan to do it by the end of 2018 (I'm leaning toward Aug or Sept) now. With the new guidelines, it should not be a problem with insurance since I am 47. I'm still more worried re: the prep and anesthesia than the insurance on this one!

I have to do a basic stool test for occult blood (for my Endo) b/c I continue to be low iron and borderline anemia on tests. I have not had a chance to do it yet but if it is positive, then the colonoscopy will become my top priority and I will not wait until Aug/Sept. I'm hoping it is normal though!

 

[Sushi]

I'm still more worried re: the prep and anesthesia than the insurance on this one!

I'd agree that for many of us this is a concern--both were a problem for me--the anesthesia was fine at the time but it took me a long time to get over it.

 

[Gingergrrl]

I'd agree that for many of us this is a concern--both were a problem for me--the anesthesia was fine at the time but it took me a long time to get over it.

@Sushi What (delayed) problems did you end up having from the anesthesia? Can you remind me, was it Propofol or Versed (or something else)?

I was planning to write in this thread later but decided to do it tonight. Both my main doctor and my Endo want me to have a colonoscopy since I remain low iron and borderline anemia and they want to know why (plus the colon cancer risk from my mom). But I realize that I am literally terrified to proceed with investigating my options. I am not scared of the procedure itself or of pain, but am terrified of the Prep Drink and of the anesthesia.

For the prep drink, I am afraid of allergic reactions/anaphylaxis and of the sheer volume of fluid in a short period of time, which I have not done well with in the past. And re: the anesthesia, I am also concerned about allergic reaction, plus autonomic complications or some weird reaction if it blocks the calcium channel b/c of my autoantibodies. I have had weird reactions to things in the past that no doctor expected or predicted.

I really like the doctor who I had planned to do the colonoscopy with (she is a colo-rectal doctor/surgeon) and she was very understanding re: MCAS and that I cannot have the standard prep drinks which contain food dyes. I did not ask her if there is an anesthesiologist present for the procedure and maybe there is, I just don't know? I need to make a list of questions for her and find a way to contact her.

My main doctor said that I do not need to be in the hospital for the procedure but I would need to be in a very monitored outpatient setting or clinic. I assume this is standard and it is not just done in a random doctor's office without access to emergency equipment?!!

 

[Wayne]

I am afraid of allergic reactions/anaphylaxis and of the sheer volume of fluid in a short period of time, which I have not done well with in the past. And re: the anesthesia, I am also concerned about allergic reaction, plus autonomic complications or some weird reaction if it blocks the calcium channel b/c of my autoantibodies. I have had weird reactions to things in the past that no doctor expected or predicted.

Hi @Gingergrrl,

I fully understand your concerns about having a colonoscopy. From my own research, I've decided I will never have one, as the potential benefits never seem to come close to making up for the potential risks. Even for healthy people, the risk is quite high. My understanding is it causes ~15K deaths/yr.

It seems your doctors are wanting you to have one so they can learn what's causing your low iron and low-level anemia. My first question would be to ask, "are there other factors that could be involved?" And could they be tested for? And if so, wouldn't it make sense to do them first, than to do a potentially problematic colonoscopy?

I hesitate to write this, as I don't want it to be upsetting for you. Thought I'd write a brief note however, and encourage you to take your time with this decision.

Best, Wayne​

 

[Sushi]

@Sushi What (delayed) problems did you end up having from the anesthesia? Can you remind me, was it Propofol or Versed (or something else)?

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

For the prep drink, I am afraid of allergic reactions/anaphylaxis and of the sheer volume of fluid in a short period of time, which I have not done well with in the past.

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.

I did not ask her if there is an anesthesiologist present for the procedure and maybe there is, I just don't know?

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.

My main doctor said that I do not need to be in the hospital for the procedure but I would need to be in a very monitored outpatient setting or clinic. I assume this is standard and it is not just done in a random doctor's office without access to emergency equipment?!!

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.

I've decided I will never have one, as the potential benefits never seem to come close to making up for the potential risks. Even for healthy people, the risk is quite high. My understanding is it causes ~15K deaths/yr.

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.

 

[Gingergrrl]

I fully understand your concerns about having a colonoscopy. From my own research, I've decided I will never have one, as the potential benefits never seem to come close to making up for the potential risks.

This was my exact line of thinking prior to my mom dying of colon cancer less than three months ago. She appeared to be in perfect health and was going to exercise classes and dancing every week until she went to the ER with severe constipation and pain. She was diagnosed immediately with Stage 4 colon cancer that had spread throughout her abdomen and into her lungs. She had three surgeries, got sepsis, was on a ventilator, and suffered horrifically for three months until she passed away.

I asked her doctors how long the colon cancer was growing and they said 1-2 years. If she had gotten a colonoscopy when it was just a polyp, she would still be alive today and would have lived to see me walk without a wheelchair and drive my car again. She never got to see this happen and even though I am very grateful for my improvements, a lot of the joy is not there b/c she did not get to see it. Her greatest wish was to see me get better and colon cancer robbed her of this and took her from us. If I could go back in time, I would have begged her to get a colonoscopy but I didn't know.

My understanding is it causes ~15K deaths/yr.

Do you know if this is from the anesthesia or some other factor? I do not take this lightly and will not be doing anything until I have time to research it all further.

It seems your doctors are wanting you to have one so they can learn what's causing your low iron and low-level anemia. My first question would be to ask, "are there other factors that could be involved?" And could they be tested for? And if so, wouldn't it make sense to do them first, than to do a potentially problematic colonoscopy?

My mom's cancer doctors, and now my own doctors, want me and my sister to have a colonoscopy b/c we are now high risk for colon cancer b/c of my mom. The fact that I have been low iron and anemic for a long time just adds to it. There is another factor which is that I have poor absorption (of everything) from MCAS but my main doctor said that we cannot just "assume" this is the cause when we do not know. I just did an occult blood stool test at Lab Corp and the results were negative (which is good) but my main doctor calls it "non-informative" and said it does not rule out that there could be pre-cancerous polyps that only a colonoscopy would pick up. But of course it is good that it is negative and it would be much more urgent if it had come back positive.

I hesitate to write this, as I don't want it to be upsetting for you. Thought I'd write a brief note however, and encourage you to take your time with this decision.

Please don't worry and I miss my mom and am upset by this whole thing every day. I did not know that 15K people die from colonoscopies every year and I will not do it until I am confident that both the Prep Drink and the anesthesia will be done as safely as possible. I won't lie, it scares me, and I do not want to do it, but I feel it is necessary in my case.