Colonoscopy -- is it wise with ME/CFS?

[SOC]

My PCP is pushing for me to get a colonoscopy. Ordinarily I'd go with it, but I'm wondering about the wisdom of it at this point because of autonomic irregularities, problems with anesthetics in the past, yadda, yadda, yadda.

My gut (maybe I should say "instinct") says that with no family history, the risk of having a problem from the procedure is higher than the risk of having the cancer and missing early diagnosis. However, I'm not at all knowledgeable about this.

What have other ME/CFS patients decided about having a routine colonoscopy?

 

[Tembo]

My Mum just had a colonoscopy (chronic bedridden cfs/fm sufferer for over 25yrs) she doesnt tolerate drugs either. The anastetic made her really crook for the first 24hrs after the procedure - nausea really bad. But on the upside - the saline drip they gave her made her POTS decrease so much she came home bright and bubbly for 24hrs! It was quite amazing to see - of course she was back in bed the next day.
Hope that helps:Retro smile:

 

[silicon]

I’ve heard that IV saline is supposed to be helpful for POTS (much more effective than orally taken salts, it seems, unfortunately).

 

[serenity]

i've had a colonoscopy with no ill effects

 

[Timaca]

I ran into the GI doctor that I want to do my colonoscopy recently. I asked her if there was another way to clear out the colon besides using Magnesium Citrate, as taking that even as a supplement is problematic for me (I have to take slow release Mg.) I plan on having a consult with her prior to the procedure so she knows about my medical history. Her comment to me was "well you look healthy." I thought, "not so much..." So, it will be good to talk with her and get the procedure over with. I'm not worried about the anesthetic or the actual procedure, but the stuff they give me to clear out the colon is what I'm worried about. 200 mg Mg Citrate on an empty stomach gave me major problems once....

Best, Timaca

 

[xrayspex]

I told one of my docs at a university center clinic that I do not want an invasive procedure and she said there is now a virtual thing they can do for this exam, its not the standard of care so depending on yr ins. it could be tricky to get paid, not sure. I should probly set that up soon as its about that age for me too....but I know a doc who perforated someone's bowel doing the invasive one, uh uh, not for me, and I got screwed up bad on anesthetic during surgery that ties into my cfs ignition so forget that unless its a life or death matter.

 

[Chris]

I think I would investigate the virtual thing. I have never had one, and do not plan to; I know three people who have--one had a punctured colon and nearly died, another had some damage and now lives with IBS, while the third was fine--they found and removed a polyp, and she is glad she had it. But so far... Chris

 

[Wayne]

Hi SickofCFS,

My understanding is that the "virtual" colonoscopy that's been mentioned involves very high amounts of EMFs and/or radiation, neither of which I think would be good for any of us.

Personally, I feel like my life (and many of us with ME/CFS) is one of "living on the edge". To me this means that it might not take much at any particular time to send us into a major tailspin, if not a premature journey to the other side. So I err on the side of staying away from invasive procedures whenever possible.

I have no intention of ever getting a colonoscopy as I don't feel the potential risks are worth it. I also don't plan on ever getting any "booster" tetanus shots, flu shots, etc.

Best, Wayne

 

[keenly]

I have had one with no anaesthetic and i mean a standard one.

I see no issue apart from what they use for the enema or taking a sample from bowel to look at.

 

[*GG*]

i've had a colonoscopy with no ill effects

Ditto, but I do not have a sensitivity to medications, no known allergies and why is she pushing for this? I wanted one done due to my digestive issues!

I am not severely affected/bedridden, moderately active, not sure if this matters much?

 

[SOC]

LOL! Sounds like experience/advice is all over the place.

My PCP is pushing the colonoscopy because it is recommended for all persons over 50yo and his practice penalizes him every year I don't get my recommended procedures -- colonoscopy, mammogram, and so on. It's supposed to be a measure of how well my PCP is maintaining my "wellness", but I do have to wonder how it affects his judgement about my non-standard health issues.

This is the same guy that was certain the live virus chickenpox booster wasn't going to be a problem for my ME/CFS afflicted daughter. Her HHV-6 reactivated, she went out of ME/CFS remission and hasn't managed to get back in remission since.

There's no point in changing PCP, all of them in the area belong to the same HUGE group practice with the same "grading" procedure for PCPs.

 

[silicon]

Fears of invasion

Hi SickofCFS,

My understanding is that the "virtual" colonoscopy that's been mentioned involves very high amounts of EMFs and/or radiation, neither of which I think would be good for any of us.

Personally, I feel like my life (and many of us with ME/CFS) is one of "living on the edge". To me this means that it might not take much at any particular time to send us into a major tailspin, if not a premature journey to the other side. So I err on the side of staying away from invasive procedures whenever possible.

I have no intention of ever getting a colonoscopy as I don't feel the potential risks are worth it. I also don't plan on ever getting any "booster" tetanus shots, flu shots, etc.

Best, Wayne

I can relate to feeling like I need to guard my fragile self against unnecessary procedures that could induce a decline. I certainly would never get tetanus or flu shots, especially since I keep hearing of PWCs consistently negative experiences regarding these (tetanus boosters sound so innocuous, yet I just met a PWC who suffered a decline because of one). I know my intestines are unhappy, but I wonder if having a colonoscopy is a mistake for me. And Im just at the age where Im supposed to start having them. It really would be nice to have a good diagnostic procedure that is not invasive.

 

[ixchelkali]

I was very concerned about getting a colonoscopy because what would be discomfort to most people can be amplified into major pain with my fibromyalgia. There was also a concern about the analgesics because of my low blood pressure. But when I started having unexplained vomiting the GI doctor really wanted to do an endoscopy & colonoscopy. Of course, he knew nothing about ME/CFS.

I decided to go ahead with it, because I think that people with ME/CFS are at higher risk for cancer, and because the vomiting thing was worrying as well as unpleasant.

It turned out to be no big deal. I explained to the nurse about the fibro pain and the low blood pressure and she got it, bless her. She was able to give me enough relaxant and painkiller that I slept through the whole thing. I was thinking it might take me weeks to recover and it was only a few days.

But I kow what you mean...we're always on the razor's edge, wondering what might push us into a major crash. For me, on balance, it seemed worth the risk, and I got lucky. I just wish I had known about Dr Chia's enterovirus studies before I had it; I would have had them do a biopsy for that, too, while they were at it.

Oh, and the vomiting? GI doc hadn't a clue; said it might be "abdominal migraine"?! I chalked it up ME/CFS, and learned how to manage it.

 

[Athene]

I've had 7 colonoscopies and I found all of them excruciating. One time I had fever for 2 weeks afterwards with bleeding etc.
The sedative was not really a problem for more than the day of the test.

The real reasons I would advise against them is:
1. In CFS they show usually nothing. This is confirmed by Kenny De Meirleir, who says the gut problems exist in the small intestine as far down as the ileo-cecal valve, not the large intestine.
2. No gastroenterologist I have met recommends having colonoscopies unless symptoms indicate it is necessary. It is an invastive procedure with risk of perforation (which can cause death). When I tell new GIs that I have had seven colonoscopes thair hair stands on end. You don't just do them willy nilly for no good reason.
If they are recommended as a screening for bowel cancer by your health authority you should ask for a fecal test of calprotectin first.

 

[akrasia]

My sister died of colon cancer.

As a result of this, I get a colonoscopy every two years. So far, I haven't suffered any side effects from it.

While the fecal test is of some use it can miss polyps and some cancers.

The argument for doing a colonoscopy is that, if done well, it can virtually prevent this form of cancer. So my vote is to go for it.

 

[Martlet]

I was reluctant to have one but finally agreed - 8 years after it was first recommended. I wish I had gone sooner!

I have no risk factors for colon cancer, my diet is a colon's dream etc. but they found 15 polyps that first time, including a large carpet polyp. I needed a follow-up six months later and my next one will be this November, one year after the second one because I am now at high risk. I urge everyone to have a colonoscopy.

My first one was painful enough, because it took way longer than normal as the doctor tried to remove all the polyps and the sedative was wearing off. The pain came each time the scope hit the splenic flexure. The second time, they gave me deep sedation in a hospital setting, with an anaesthetist administering the sedative and that one was fine.

The virtual test is okay except that if they see anything, they still have to go in to remove it. I prefer the real thing, letting them investigate and remove.

Finally, the preparation. My doctor uses Movi-Prep. I thought I'd never get it all down, but I did. I also found it helpful to eat light, for the couple of days before. It meant no griping pains when the solution did its job.

 

[Wayne]

Funny Colonoscopy Comments

Hi Everybody,

I just remembered a list of some of the funny comments I ran across at one time that were made by patients who were getting a colonoscopy. If you're up for a few chuckles, you can read them below.

Wayne
.........................................

On the subject of Colonoscopies...

Colonoscopies are no joke, but these
comments during the exam were quite humorous..... A physician claimed
that the following are actual comments made by his patients
(predominately male) while he was performing their colonoscopies:

1. 'Take it easy, Doc. You're boldly
going where no man has gone before!'

2. 'Find Amelia Earhart yet?'

3. 'Can you hear me NOW?'

4. 'Are we there yet? Are we there yet?
Are we there yet?'

5. 'You know, in Arkansas , we're now
legally married.'

6. 'Any sign of the trapped miners,
Chief?'

7. 'You put your left hand in, you take
your left hand out...'

8. 'Hey! Now I know how a Muppet
feels!'

9. 'If your hand doesn't fit, you must
quit!'

10. 'Hey Doc, let me know if you find my
dignity.'

11. 'You used to be an executive at
Enron, didn't you?'

12. 'God, now I know why I am not gay.

And the best one of all.

13. 'Could you write a note for my wife
saying that my head is not up there?'

 

[Martlet]

Thanks Wayne. Laughing so loud. I like the Arkansas one.

 

[Daffodil]

i had some bleeding and was supposed to have a colonoscopy 15 yrs ago but was too afraid. i finally decided to go ahead and have one a few yrs ago and there was nothing to it. drinking the liquid and fasting the day before to empty the bowels was a little uncomfortable but the procedure itself was not bad. i thought i would be put in a "twilight sleep" and they did administer a sedative intravenously, but it didn't seem to have an affect on me; i was talking and lucid throughout the procedure.

i am not sure if i could handle the bowel emptying and fasting now, though...because i am much sicker ...but i wouldn't worry about the CFS worsening from the procedure.

best of luck
sue

 

[Wayne]

I was visiting with my brother on the phone yesterday, and he mentioned something I felt I should share on the forum. He said a friend of his (in good health, no CFS) had a colonoscopy last year, and has complained that his memory has not been the same ever since. Kind of confirms for me that colonscopies are not for me--though I'm not in a high risk category. -- Interestingly, I ran across an article earlier this week which apparently offers a viable alternative to colonscopies--dated Feb. 25, 2019: -- Hi @SOC

Annual at-home stool test may be as effective as colonoscopy, study finds
The stool test is cheaper and less invasive, experts say.