@loribmt, and all... Hello, my Connect friend, Lori! Good to connect with you after such a time.
I need your advice and wisdom for my colonoscopy prep.

As you may have read in my message Jan 4th, I've had serious issues with the last 2 colonoscopies last year, neither were successful procedures due to poor preparation issues. I grow a plethora of polyps and fast, so for many years I had either 6 month or annual colonoscopies. After one several years ago at Mayo, they scheduled my follow-up for 2 years. Due to other medical issues, it pushed to 3 years, which is now the regularly recommended timeframe due to new information about polyp growth, etc. I still need them a bit more often, but what a relief!

Well, the July colonoscopy was a bust! I have primary aldosteronism, take spironolactone for help with urine elimination due to the sodium retention this problem causes. I for decades tested low potassium levels and couldn't even with supplementation get my levels above low normal and often were seriously below normal. It's fairly well controlled now with the Spironolactone and occasional Bumex diuretic when I retain more than 3 pounds in 1 day. All was working nicely until I did the prep for the colonoscopy.

Drinking that amount of liquid caused my body to have serious problems. With the prep drinking I retained 11 pounds of liquid, didn't clear my bowels even though I was up all-night having bowel movements. I've dealt with constipation for a couple of years now following years of diarrhea and had a bunch to clear but wasn't successful even though I followed the preparation as directed.

The doctor was stumped but agreed to attempt the procedure. Unsuccessfully. It took me over a month to recuperate from the experience and regain my edema control, etc.

I worked with the gastroenterology department to work towards a 2nd procedure which was scheduled in October 2023. I begged for a different way to prep that would help beat my fluid retention issues. We tried a different solution, and I was on clear liquids for 3-4 days prior to using a full preparation solution box for 2 successive nights prior to the procedure.

I live alone, am 77 years old, pretty much debilitated from autoimmune diseases, multiple health issues I've dealt with since I was a child. So, the normal prep is tough for me with a lot of difficulties all night long, and cleaning the bed and bath while dealing with the prep and all alone can be overwhelming. But I did it for 2 nights, getting weaker by the minute with only clear liquids for days, etc.

I arrived for the procedure dehydrated, with serious edema again, chest discomfort, high heart rate and lung/breathing issues... I was immediately helped to the bed, put on IV fluids open full, given a breathing treatment, and given great support help. The procedure was still unsuccessful. Not able to get far into the colon and see much less remove what might be there.

Also, I developed outside hemorrhoids, a couple were engorged and very painful. First time for that issue! The doctor took care of them during the colonoscopy, but my wake-up was tough, and I was in serious pain and discomfort I've never experienced from this procedure.

Right ear hurt, right neck and head hurt badly, hips hurt, lower back was in severe pain, I was a real mess. I was told at recovery and following from the gastro department these issues were due to the positioning required to attempt to get better views, etc.

Not acceptable. I've had many colonoscopies for decades and never had any such issues. Not acceptable. And no further explanation or follow-up care. No interest in follow-up or in resolving my prep issues. So, I'm now in quite a conundrum, eh?

Suggestions, Lori? I told my gastroenterologist and primary doctor I will not have another colonoscopy ever unless there is some resolution to the prep issues for me. I'm aware it's difficult with primary aldosteronism. That's a challenge, but I'm not the only patient with these issues. There must be a solution for those who can't deal with the current prep.

I sent off a Cologuard, twice, Awaiting results now from the last test. They couldn't get enough DNA for the 1st test. If it's negative, I'll take another one annually, or every 6 months perhaps, until one is positive. I'm thrilled to be alive today thanks to the wonderful help and care I've received at Mayo Florida. I'm immensely grateful for their kindness and knowledge that have given me additional years with better living as well!

But, this isn't acceptable.

I'm still having issues from the last colonoscopy-neck and head pain, ear pain, hips and severe lumbar pain that's keeping me immobilized, in bed or recliner most of the days now. Previously, I was up and active and even out with friends occasionally. Quite an improvement due to the Mayo help.

Now, I'm virtually bedbound, definitely housebound and living upstairs since the stairs are dangerous now. I've had 2 Covid infections, 1 in July 2023 and 2nd in November 2023. Developed PMR, GCA, Sarcoid flares, and am in almost constant lumbar pain that prohibits me from activity. I'm taking Prednisone, Methotrexate, all my normal meds, additionally using prescription 5% lidocaine patches continually and Kenalog cream on my Sarcoid rashes and lumbar pain with patches. Oh, I also have new hemorrhoids, engorged again, and using Hydrocortisone cream there.

Gastro told me to consult my Primary doctor for prep help. What!? Nuts! He's not the colonoscopy expert...that's the gastro department and they oversaw all previous procedure prep.

Please, Lori, any advice, suggestions, assistance you may have is so appreciated. I need guidance and apparently, I'm the only patient at Mayo who's ever had edema issues with prep.

Thanks, my friend, for your input. I need it!
Blessings, Elizabeth