Colonoscopy?

[R.Little]

Hi again!

I appreciated general thoughts on anaesthesia earlier (ie avoid Epinephrine, if possible). My GI doc wants me to get a colonoscopy due to gut motility issues. We have to wait a while because of Covid-19; I'm getting a CT scan in the meantime.

However, I'm just curious how people have responded to colonoscopies generally.

I worry about flushing the gut out and damaging my gut biome, but I don't know if that's specifically an ME/CFS concern. And of course anaesthesia of any kind can be tricky for ME (I have apnea and hypersomnia issues on top of the CFS which don't help).

Anyhow, any anecdotes about colonoscopies would be appreciated!

 

[Booble]

I have not had but I don't know anyone who has had any problems with them at all.

For your CT scan are they doing with contrast dye? I found out after the fact I'm allergic to the dye.

 

[R.Little]

For your CT scan are they doing with contrast dye? I found out after the fact I'm allergic to the dye.

They're giving me barium.

I've had CFS since 2013, and I have yet to notice any food/chemical/etc. allergies or sensitivities, (I have extreme light & sound sensitivities instead.) So... hoping barium will be ok?

 

[R.Little]

@Booble
Oh, and yes, they will be using contrast dye.
Just realized that too. Hoping for no issues with it.

 

[Booble]

The iodine based contrast dye is what I reacted to. The reaction was just a hive that appeared while I was waiting after the procedure. I actually thought it was a mosquito bite but when I mentioned it to the doctor or nurse they said, it was an allergic reaction hive so be sure to notate that you are allergic to contrast dye in the future. I don't think it was CFS related.

I'm glad you don't have any food allergies/sensitivities. I didn't until I had a huge outbreak of hives from eating soft shell crab. I didn't even like the crab. Yuk. Since then I've become paranoid of food allergies.

I think you'll be fine with your colonoscopy. It's a very, very common procedure. I believe sedation is minimal and you'll get some good information of how things are looking down in that area. Good luck!

 

[kangaSue]

A colonoscopy cleanse can be beneficial for your gut biome as it basically scrubs the intestinal wall which can also remove any harmful bacteria that's gained a dominant foothold and hard to budge with a milder laxative protocol and the prep alone has been known to improve gut symptoms afterwards in some cases.

 

[R.Little]

Thanks @Booble !

It's always a bit stressful getting new procedures with CFS, just because you know *someone* with CFS has probably reacted to it. But I haven't had any crazy reactions to things thus far, and I've tested negative for MCAS twice already. So, yeah, it'll be fine. Just gotta be careful about that Covid-19 business, like everyone else.

 

[R.Little]

the prep alone has been known to improve gut symptoms afterwards in some cases.

Interesting!! I had not heard that!
For some reason I thought it only made the biome worse, but it totally makes sense that it could improve it too!

 

[Pearshaped]

I had a colonoscopy in early CFS days.
the prep procedure was hard for me probably bec I was so dehydrated and had extreme hypotension back then.
the prep didn't help my gut issues at all.If I understand it right,its not possible to change your microbiome in just flushing out things of your colon.

the [gas] anestesia was a blessing in disguise bec it was the first thing that put me to deep sleep for an hour after months.But I see in your case the anestesia is a bit of a concern..

The best you can do is communicate your concerns with your Gastroentologist.And hydrate hydrate hydrate.

 

[Rebeccare]

I think that both @Gingergrrl and @starlily88 wrote about their experiences with this procedure a little while ago--maybe they'll be able to share how things went and what they've learned.

 

[Sushi]

I worry about flushing the gut out and damaging my gut biome, but I don't know if that's specifically an ME/CFS concern. And of course anaesthesia of any kind can be tricky for ME (I have apnea and hypersomnia issues on top of the CFS which don't help).

Anyhow, any anecdotes about colonoscopies would be appreciated!

I have had quite a number of colonoscopies--both with and without general anesthesia. The prep is always hard but the biggest problem for me was maintaining electrolyte balance as you can get very dehydrated. My gastro had me do the prep that he considered best for patients who needed to keep their electrolyte balance but I still got PACs (premature atrial contractions).These stopped once they had me on IV saline. Recovery was easier without general anesthesia but the conscious sedation was not enough and thus it was quite painful. With general anesthesia, they usually give you propofol--which puts you out instantly--but it did take a few days to get over it.

 

[Lieselotte]

I had a colonoscopy 6 years before I got CFS. I was having gut issues and pain although i had recently gone gluten-free and that had helped me a lot. My GI said "nothing's wrong with you, but if you want we can do an endoscopy & colonoscopy just to take a look. There's nothing else we can do."

So I said sure... Let me just say that I will not be getting a colonoscopy ever again in the future! The prep process was extremely hard on my gut and maybe the other stuff they use too, I'm not sure. By a couple of months later my health was taking a turn for the worse. I am grateful because my declining health led me to functional medicine, but I will never have a colonoscopy again. They didn't find anything anyways - you can't see a leaky gut...

Maybe there is a more gentle way to do the prep? Just take good care of yourself after the procedure, maybe get some high CFU probiotics and eat extra clean. Best of luck to you

 

[starlily88]

The iodine based contrast dye is what I reacted to. The reaction was just a hive that appeared while I was waiting after the procedure. I actually thought it was a mosquito bite but when I mentioned it to the doctor or nurse they said, it was an allergic reaction hive so be sure to notate that you are allergic to contrast dye in the future. I don't think it was CFS related.

I'm glad you don't have any food allergies/sensitivities. I didn't until I had a huge outbreak of hives from eating soft shell crab. I didn't even like the crab. Yuk. Since then I've become paranoid of food allergies.

I think you'll be fine with your colonoscopy. It's a very, very common procedure. I believe sedation is minimal and you'll get some good information of how things are looking down in that area. Good luck!

To Boobie I also had reaction to large shrimp I ate - which I did not react to when I did not have CFS.
I have eaten shrimp all my life, often in the summer, steamed with Old Bay. I had swollen eyes, swollen face.
When one gets hives from eating Crab meat - you will be told by top Allergists to NEVER eat
ShellFish of any kind again. You are allergic to all shellfish, like crab, lobster, soft shell, shrimp.

Where I live eating Steamed crabs is part of our lives. I found out by my Endocrinologist that he too has a
Shell Fish allergy. But it is normally only to one kind of shellfish.
Petrified and armed with an EPIPEN - I tried out Lobster, Steamed crabs, etc. No reaction.
But the top Allergist in my state - said no to shrimp salad sandwich unless eaten at his office.

So the good news is you are allergic to all shellfish - not other "foods'. Even then it is to Crab Meat.

I also get hives if I use any contrast dye for CAT scans - I am allergic to IODINE, but also other contrast dyes, so when you go to dentist - or any procedure - they can't use IODINE but can use BetaDine to clean the area.
Starlily88

 

[Booble]

Thanks for the info!

I used to eat shrimp prior to the crab debacle but I haven't since. I never much liked shellfish (even though I'm originally from Boston -- the home of "lobstah!"

I can't believe you were brave enough to eat the lobster, crab etc with your epipen ready to go!

The doctor I saw for the crab hives said that it's really hard with crab to know --- she said I might be allergic to crab but also it could have been something else that got into its shell.

The bad part of all of this is that I've now become a bit of an allergic reaction - phobe. I get a little bit nervous eating anything that I haven't had before.

 

[R.Little]

I know this is a super late response, but in case anyone is curious, I ended up just getting a stomach X-ray, because it was too risky to go to the hospital for a colonoscopy. The results were not good--it was not quite compacted, but it was close. My GI doc was pretty seriously worried about it.

However!

The barium drink they gave me for contrast ended up clearing out my gut so well that it somehow bounced back. No need for a colonoscopy; I've become oddly regular, without any gut meds (just a bit of Miralax, if it feels like things are slowing down too much; maybe once a week or so). Even prior to things getting so bad, I was on a bunch of gut meds for years that just barely kept me regular enough.

There's no way to know for sure what changed, but I think the barium likely knocked loose some unhealthy gut bacteria and made room for a better biome. I've always had a relatively good diet, but around the time of that procedure, I increased my fiber intake even further and reduced my complex carb intake. Maybe the barium just made room for the fiber to do its job helping the good bacteria. Who knows! Just glad my gut is not in such a terrible situation anymore!

 

[Gingergrrl]

I think that both @Gingergrrl and @starlily88 wrote about their experiences with this procedure a little while ago--maybe they'll be able to share how things went and what they've learned.

OMG... somehow I managed to miss that you tagged me back in April @RebeccaRe! If anyone in this thread still needs info re: colonoscopy, please tag me again.

 

[lenora]

Hi, I've had both colonoscopies and surgery for bowel obstruction. I have a weird reaction to the new anesthetics used today and will go 3 or 4 days with no sleep whatsoever, once I come out of the anesthetisia. that is...and that's right away. That's a long time to be without sleep, but that's just the way my body works. Everything having to do with sleep is messed up and spite of sleep tests, nothing can be done.

Yes some bowel meds have a laxative like quality. You lucked out and without surgery. You're very lucky as surgery leaves you open for scar tissue which makes surgery years later more lately. Enjoy your escape and take good care of your intestines. I didn't even notice anything amiss last summer, and ended up having to have surgery when I did notice. All of my doctors assured me that I didn't have a choice, Of course I'm older (73) so that plays into all this also. Miralax is good stuff and comes highly recommended by both physicians and pharmacists. I'm glad that you're well. And you're aren't the only one with crazy sleep behaviors after anesthesia. I guess they run both gamuts, Yours Lenora.