The information shared in this post reflects my personal experience as a chronic illness patient and board-certified patient advocate. It is not intended as medical advice and should not replace guidance from your own healthcare team. Always consult your doctor before making any decisions about your care.
As someone with Sjogren’s disease, non-radiographical axial spondyloarthritis, dysautonomia, hypoglycemia, and a recent flare of acute pericarditis, I had my concerns going into my first colonoscopy.
Let me be clear about something upfront: I want you to get your colonoscopy if it is safe and appropriate for you. Whatever comes next in this post is everything I wish someone had told me ahead of time, and it’s meant to help you go in better prepared.
I am a board certified patient advocate. I literally wrote a book about navigating the healthcare system. And still, my first colonoscopy humbled me in ways I didn’t see coming.
The Prep Gone Wrong: When Your Own Medical History Gets Ignored
My GI team gave me a four-day prep protocol. Most people get a day before and day of prep. But I have notable dysmotility issues (thanks, Sjogren’s). Since things move slowly and you may need more time to clear things out. Makes sense, right?
What didn’t make sense: nobody looked at my prescription dysmotility medication before writing that protocol. And take medication totally affected how my gut responded to the prep. It was like prep on steroids.
By day two of the prep, I was throwing up the prep solution and so weak I could barely function. Day two involved drinking 64 oz of prep in a 3 hour window. My stomach doesn’t move that fast. It had no where to go.
Here’s the advocacy move: I called the nurse. I did not push through.
That instinct to just tough it out, to not bother anyone, is one of the most dangerous things chronic illness patients do. We are so used to feeling bad that we normalize things we shouldn’t. When something feels wrong, it often is wrong. Trust your gut!
Calling was the right move. It opened a conversation that should have happened before the prep even started. The nurse admitted the oversight and my prep was altered.
What to do before your colonoscopy:
- You will be asked if you have constipation during scheduling. If you do take a medication for constipation (and it works), such as Motegrity, Linzess or Mestinon, be sure to say you do not have constipation while on that medication. Yes, you have it, but it should be noted that you’re on a medication that eliminates constipation. Confirm if you are allowed to continue that medication during that prep process.
- Bring your full medication list to the conversation, and explicitly ask: “Does any medication I’m on interact with or complicate this prep?”
Managing Dysautonomia During Prep
For those of us with dysautonomia, keeping fluids and electrolytes balanced during prep is critical. The fluid loss from prep can tank your blood pressure, spike your heart rate, and leave you in a dysautonomia tailspin before you ever get to the procedure.
I got creative, and I think it made a difference.
What worked for me:
- LMNT electrolyte packets in one flavor. I used these specifically with the prep drink to support my electrolyte balance.
- Vegetable broth. Something warm and savory was grounding when everything else felt clinical and miserable.
- A second electrolyte drink in a different flavor. This was important. By the second day, the LMNT flavor became so associated with the prep solution that it triggered nausea. Swapping to something different helped me get fluids down.
A few important reminders on fluids:
- Follow your care team’s instructions on what is and isn’t approved.
- Avoid drinks with red, blue, or purple dyes, as these can interfere with the procedure.
- Vegan-friendly options exist if that matters for you: agar-based Jell-O alternatives count toward your fluid goal and can help push fluids when drinking feels impossible.
The Blood Sugar Crisis
I have hypoglycemia. My care team knew this. I advocated, ahead of time, for a plan to manage my blood sugar during the extended prep days. After some back and forth, we landed on pea protein isolate mixed with black coffee or broth, then apple juice to keep my sugar up as a safe option during the prep days.
Problem: no one extended that plan past midnight the night before the procedure. I asked, but I basically got a shoulder shrug.
At 4:30 in the morning the day of the colonoscopy, I was having a hypoglycemic episode with no approved solution in sight. I had a small window before the procedure where I could sip apple juice, but without the stabilizing protein, it just spikes and crashes.
By time I got to the medical facility, my sugar was 52. And you take take glucose orally. It has to go in an IV.
Advocating for yourself in the planning phase is so important. Here are some questions to consider:
- “What do I do if my blood sugar drops after midnight the night before?”
- “What is the protocol on the day of the procedure if I’m hypoglycemic before going in?”
The IV: When They Don’t Believe You’re a Difficult Stick
Boy, I told them. I explicitly asked for ultrasound-guided IV placement. I know my veins. I am a hard stick.
The response? “We only use ultrasound for difficult cases. We do this all day.”
I thought, “Alright, chief. Let’s see what you got.”
He gave three painful attempts before waving the white flag. Then the ultrasound was brought in. After two more attempts, we finally had an IV. So I thought.
The IV ended up placed in muscle tissue, which was excruciating once the IV was flushed and started. They had to remove it and start over.
All of this while I was waiting for IV glucose because I couldn’t take it orally.
If you know you’re a difficult IV stick, here is your script: “I have a documented history of difficult IV access. I know you probably hear that all the time, but I have multiple health conditions that always complicate this process. I am requesting ultrasound-guided placement from the start.”
Say it. Practice it. If you have an advocate with you, have them say it too. Standing firm on this request protects you from unnecessary pain and saves the staff time as well.
Recovery: Give Yourself More Time Than You Think You Need
I was woozy and unsteady for nearly three days after my procedure. The kind that made going on walks or driving not ok.
For a healthy person, 24 hours of rest is usually enough. For those of us managing chronic illness, dysautonomia, autoimmune conditions, or a complex medication load, the sedation hits differently. The prep depletion hits differently. The whole thing hits differently.
When you schedule your colonoscopy:
- Block out at least three days for recovery, if you can.
- Do not schedule anything important the day after, including drives, work meetings, or appointments.
- Have someone with you, and make sure they can stay. You will not be allowed to drive home.
- Stock easy, gentle foods for when you’re back to eating.
- Prepare for your chronic conditions to potentially flare in the days following.
The Bottom Line
Getting a colonoscopy as a chronic illness patient was a… special experience. The prep is a struggle. The fluid management is more complex. The recovery takes longer. And the medical team, even a good one, may not fully account for everything without your input.
Go in prepared. That’s the whole point of sharing this.
You know your body. You know your history. And now, hopefully, you know a little more about what to expect and what to ask for.
I’m happy to report I was given a clean bill of health, and I hope you do too! Again, if your provider is recommending a colonoscopy, please consider it seriously. Despite everything, I’m so glad that I did it.
Also, it was the best nap of my life. 😉
Little Engine Patient Advocacy 
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