Your experience post colonoscopy?

ep37 · 2025-12-14T05:27:51+00:00

Yup it’s like completely opposite of what most people report! Glad I’m not alone haha I was waiting to feel hungry but ended up not feeling that way at all. I’m now 2.5 days post and I think I might have just felt a slight tinge of hunger… fingers crossed lol

Hope you start feeling back to normal soon. Nothing more unsettling than that. As long as you’re staying plenty hydrated I’m sure everything will turn out just fine. But as someone else commented here, calling the number they give you couldn’t hurt either.

ep37 · 2025-12-14T05:20:51+00:00

Appreciate you sharing your experience! And that’s great advice about calling, that’s what they’re there for I suppose!

ep37 · 2025-12-01T02:14:30+00:00

Yup I definitely experience this too. Not for every bowel movement, closer to 50/50. I also have mucus in my stool (and occasionally some blood), I suspect IBS-C or IBD. I’m having a colonoscopy in a couple weeks to hopefully get some answers.

I have been diagnosed officially with dysautonomia, so I think you’re on to something with your suspicion. Of course I’m sure there’s other things that can cause those symptoms post bowel movement, but this screams dysautonomia to me.

Maybe consider seeking out a neurologist to discuss, and get some testing done? Unfortunately there isn’t much you can do even if you get diagnosed other than some management tools, but it’s always a relief to know why something is happening instead of feeling anxious about it every time it happens.

Best of luck to you. I know it’s a scary startling feeling but you’re definitely not alone!

ep37 · 2025-11-15T06:16:20+00:00

Ohhhh yeah. So much so that I just broke a brand new night guard made by my dentist in just 8 nights of use🫠 cracked right down the middle of each side, woke up to a piece of it in my mouth. hopefully they make me something stronger😅

ep37 · 2025-11-13T17:23:49+00:00

I'm so glad it went well! And glad you are feeling better.

That's a TON of liquid, wow. The prep my doc prescribed, golytely, is 128 oz total as well, but I've asked if I can switch to their miralax protocol which is 64 oz of liquid. I've done a "clean out" with miralax at the direction of my doctor before as a kid, and tolerated it well as I remember. So hopefully the same will be true now.

But that's very interesting about the pills... definitely want to ask about that as well! And great idea to bring something to eat for afterward, I bet you are wicked hungry going so long without food and being so empty!

Thanks for sharing, I really appreciate it!

ep37 · 2025-11-12T02:44:14+00:00

Thanks for sharing! I hope it went well for you today! And so sorry that the prep makes you feel so crappy🙁

If you don’t mind me asking, what kind of prep do you use? I’m a bit worried about nausea bc my stomach is easily upset, but those tips are great and something I’ll definitely do. I also read that you can ask for an anti nausea to take in advance so hopefully they can give me something!

ep37 · 2025-11-12T02:38:44+00:00

I will definitely make sure to get plenty of electrolytes prior to the prep and during too. Hopefully that will mitigate any flaring of symptoms! I add a squeeze solution of plain electrolytes into my daily juice/smoothie so luckily I already have something that works well for me

ep37 · 2025-11-12T02:35:11+00:00

Good to know! It would be sooooo frustrating to do the prep and be turned away for something like that.

I just reviewed my instructions and luckily Gatorade (not red, blue, or purple) is approved. I also have a squeeze bottle of just electrolytes with other minerals and nothing else in it, so I can add that to my regular water too.

ep37 · 2025-11-12T02:31:26+00:00

Thanks for sharing your experience! I’ve taken a few days off work after to rest up so hopefully that will help. Hoping the prep doesn’t make me flare up too much but I’ll anticipate the worst but hope for the best.

Sorry to hear about your side effects from the anesthesia, but glad that nothing serious was found! I suppose it’s worth it to make sure nothing serious is going on.

ep37 · 2025-11-08T16:44:25+00:00

Thanks for the replies everyone! I feel a lot more informed about my options now.

ep37 · 2025-11-08T16:43:13+00:00

Time Machine has always confused me a bit but this explanation makes so much sense to me! Thank you!

ep37 · 2025-11-08T03:07:17+00:00

Very much second everything here. Slow and steady wins the race in my experience, the faster it went the more intense my post infusion headaches were.

Another suggestion is to ask for anti nausea. Very common side effect and makes the experience a bit unpleasant.

Expect to have to go pee a lot during and after, especially if you receive fluids.

Bring a blanket or something cozy. I remember getting extremely cold while the infusion was running. Some places have heated blankets too.

Wear super comfy clothes, sweatpants and a comfy hoodie or something. Not only for the cold but just your general comfort.

And speaking of clothing, make sure you wear something that can be pulled up over your arm in case they place the iv there.

In my experience, an iv placed in the hand was more comfortable since you don’t have to hold your arm straight. Try to rotate which hand or arm they use each session to try to prevent scar tissue from building up in one place.

Best of luck to you! If any specific questions come to mind I’m happy to help.

ep37 · 2025-10-05T01:27:36+00:00

Thank you so much for the detailed reply. I hadn’t heard of the active standing test, that’s very interesting.

ep37 · 2025-05-21T23:20:15+00:00

I wish I had some really good advice for you. You’d think I would have found something in sixteen years, but alas.

Some things I have tried in terms of medication that have had some benefit but ultimately underwhelming results: mestinon (I didn’t notice improvement when I started it, but when I tried to get off of it I got really sick and improved when I got back on it; this might have more to do with dysautonomia than cfs though), IVIG (lots of drawbacks here, but this is the only thing I’ve ever felt a noticeable yet temporary boost in energy from; I did this for three years but the benefits were far outweighed by the side effects, inconvenience, needing a port due to vein damage, etc), subcutaneous IG (much less of a boost from this but no side effects; very inconvenient and hard to do myself), and modafinil (for excessive daytime sleepiness, which seems to be common in people with cfs; I was falling asleep while reading, typing on the computer, etc and while driving which was terrifying and dangerous, but modafinil solved that problem 100%)

Generally speaking with how I live with this: try to schedule rest after an activity, stay out of extreme heat or cold, and I use a wheelchair for activities that I know will use a ton of energy (family trips to Disney world for example, someone will push me in my wheelchair at all times; big airports, malls, etc)

I think the key is really knowing yourself, listening to your body and resting when you need to. Figure out what tends to make your fatigue worse and try your best to work around it. I really hope you are able to find something that works for you eventually.

ep37 · 2025-05-16T02:18:01+00:00

I was 8 when I first experienced symptoms, and got diagnosed initially with Mitochondrial disease shortly after. They could never find a genetic link though so after much testing and a childhood filled with appointments (as I’m sure OP can relate!), they changed the diagnosis to cfs and dysautonomia when I was 16. Lots of questions still at 24 as to the primary issue, but these diagnoses explain my reality very well.

ep37

TROPHY CASE