Now it's my turn for a colonscopy ***UPDATE - See message 21

[csziggy]

Last edited Wed Mar 4, 2020, 06:41 PM - Edit history (1)

BUUUT- it may not happen.

The instructions were to be on a clear liquid diet today, take magnesium citrate at 2 PM, then take NuLYTELY at 5 PM.

So I was reading the instructions on the magnesium citrate when they called to confirm my procedure had gotten to the part warning about taking it with kidney disease. I only have one kidney, having had the other removed due to cancer. I asked if it were safe for me and they told me to not take it.

Then I read the instructions for the NuLYTELY - even MORE warnings about kidney disease with added warnings about heart disease and fainting. They found the mass on my kidney while preparing to replace my aortic valve. While in the hospital recovering from the valve procedure I had a vasovagal syncope (fainted). I had another syncope after my back operation last March.

I'm waiting for a call back from a nurse at the clinic. I am not sure I want to take a chance on my one kidney shutting down, heart issues, or fainting if my electrolytes get out of whack. I gave them a full list of operations, medications, complications, etc. at my first visit. I guess even though the nurse who set up the procedure reviewed every single possible issue, no one checked the medications for preparation for it.

[The Blue Flower]

1. I have refused having a colonoscopy

Too invasive and difficult. I've been doing the stool sample test that you mail in instead. I'm 70 and healthy, btw.

[csziggy]

6. The reason for this procedure requires them looking inside

I wish I could just do the stool sample!

[Skittles]

34. the stool sample is NOT highly recommended

if they found something, you'd have to have a colonoscopy anyway and it would immediately be considered diagnostic

[csziggy]

35. Ages ago before I saw them advertised my doctor gave me one to try

For whatever reason I never did it. I'd rather just have the full test and be done with it.

That's what I did when they wanted to see if I could benefit having a CPAP. They offered a device to wear one night at home - if that showed a need, I'd still have to get the full in-clinic sleep test. So I just did the sleep test. The CPAP really does help so I'm glad I did!

[frazzled]

2. It sounds like you shouldn't do it.

Call your doctor and ask what other options you have for testing. A stool sample analysis is not as good, but it’s maybe sufficient. Better than having a major, potentially life-threatening episode!

I wish you luck, and stay safe. You’ve been through so much.

[csziggy]

7. I'm waiting for a call back

We may have to delay this test and try again with a different protocol. Below getagrip_already suggests one his wife used. Iused those meds without problems so that might work!

[Ohiogal]

3. How frustrating!

I’m so sorry you have to go through this.

Yep, it sure seems like someone dropped the ball when reviewing your history. And what a huge inconvenience it is causing you. I have had similar experiences myself. You really have to learn to speak up for yourself.

[csziggy]

8. That's why I'm glad my husband is with me every time I've had surgery

He is a good patient advocate - though with my second syncope he wasn't there that morning. If he had been, he would not have let me attempt to go to the bathroom when I was nauseous. Until then, I didn't know extremely low blood pressure can cause nausea!

[getagrip_already]

4. an alternate protocol....

My wife couldn't stand the golightly so she did some research and found another way to cleanse before a colonoscopy. The doctor was fine with it.

Basically, you take 4 Dulcolax tablets, drink a half gallon of miralax solution in 8 oz doses every 10-15 minutes, then drink some gatorade.

Dulcolax and miralax are just laxitives. Obviously look at whats in them, but they shoulodn't be a risk for kidneys.

If you want the full instructions, just let me know.

[yonder]

5. +1.

[csziggy]

10. I've used both ducolax and miralax so that might work

I hate gatorade, but since the main purpose for it is to make sure the electrolytes don't out of whack, I can handle it for one day.

Apparently the biggest risk is that much water leaving the system can cause severe electrolyte problems which can cause kidney shutdown, fainting, and irregular heatbeat. I'm really not sure I want to risk it for a case of hemorrhoids.

I'm waiting for a call back, but if I can do that regimen, I'd have to call my husband to pick up Ducolax. I have Miralax here already.

[CountAllVotes]

15. I have tachycardia as well

It is from the pain I live in.

When I am asleep my heart races like hell!

You don't need to put your body through this!

Please take care!!

[LuvNewcastle]

30. That's exactly what my doctor told me to take.

It definitely worked! No need for prescription meds when OTC will do it just as well. I had mine done several weeks ago and everything came back clear.

[CountAllVotes]

9. Don't do it!

I had three abdominal surgeries in 2009.

I lost half of my intestines and my appendix and had an inguinal hernia after that!

They noted polyps during these surgeries.

I was supposed to go back the following year for a colonoscopy but I never went back because I have severe adhesions from these surgeries and the risk of perforation is high. This may well be your case too!!

That was almost 11 years ago and I am still here.

Please be your own best advocate!

Take care csziggy!

[csziggy]

13. Whoa - and I thought I'd had lots of surgeries

I left out that when they took the kidney out - which they found before the cancer spread - they also repaired an umbilical hernia. My aortic valve replacement and the kidney/hernia operation were about one month apart. That is way too close together for major surgery but they didn't want to take a chance on the cancer getting away from them.

I had a colonoscopy in 2014 which showed nothing but my colon was not clear enough for the doctor to be happy. They've been nagging me to get another one. What with various surgeries and deaths in the family it has never been a good time to do it.

With all my surgeries and the side effects of the opioids, I now have hemorrhoids which are getting to be a problem. My family doctor sent me to the "digestive disease" doctor about that and recommended the colonoscopy. Maybe I'll just live with the hemorrhoids...

[CountAllVotes]

14. Cancer killed my mother and brother

That was in 2002 and 2004.

Am I worried?

I'd be a liar to say no but the risk of perforation is very real.

I suffer from chronic pain from all of there surgeries.

I suppose I'm at a point in my life where I just roll with the tide so to speak.

I try to stay far away from doctors! They are the main reason I am such a damn mess! Its called malpractice!

Do what YOU think is best for YOU!!!

[Bayard]

11. I had a colonoscopy

Last year, for the first time in many years. High incidence of colon cancer in my family, including both parents. So considered, high risk.

I only have one kidney as well. The worst thing was drinking all that crap and not eating the day before. Thought I was gonna die!

But, amazingly, not even a polyp.

Have you considered the virtual test? Non-invasive.

[samnsara]

12. yikes hubbys lost a kidney to cancer as well and we are due for another procedure in a cpl years..

..BUT my drs office has their own version of the mailer for the poop. Wonder if hubby can do the mail in one. These procedures dont bother him.. he watched his first one. I screamed and whined to be knocked out.

[whistler162]

16. See if they recommend the one

advertised on TV - https://www.webmd.com/colorectal-cancer/news/20140813/new-colon-cancer-test#1. My brother decided to go the Cologuard route. Due to meds he is on. Not sure I agree with him since our mother's mom had colon cancer, was 30_ years free, and a cousin on that side of the family just had a bit of cancer removed from his colon, supposedly not inherited.

[csziggy]

22. No, I need them to actually look at the actual parts

I'm not too worried about colon since there is no history in my family but I've had other issues due to medication side effects after other surgeries. I mention my hemorrhoids above.

Of course, there was no history of kidney cancer, either and I had that. It was pure luck they found that early.

[DFW]

17. Just discuss ALL your medical issues with them beforehand. MAKE them take the time. Here's why:

I had my first one soon after I turned 50. Sure enough, I had a polyp, although it was benign. In the meantime, I found out I had serious heart disease (artery clogging). For colonoscopies, they recommended patients on blood thinners stop taking them 10 days before the procedure. So I did. Right after the procedure, I nearly lost consciousness about an hour later. My friends took me to the emergency room (I was in Dallas at the time), and I was having my very first genuine grade A heart attack. It was very mild, and I had no muscle damage, but I didn't know that at the time.

They called down a cardiologist, who went ballistic when he heard that I was told to go off the blood thinners for ten days. He said ten days is EXACTLY how long the clogging white cells, repressed by the blood thinners, need to multiply to the point where they will clog an artery again. His office had words with the colonoscopy people, and sure enough, the next time I needed one, the form said to go off the blood thinners for FIVE days, not ten.

Add to that, that my wife, who has gone through two cancer battles, has had them in Germany, but had a far less drastic prep program, and has come through them just fine. So not everyone has to go through the full program prior to a colonoscopy. That having been said, fatal colon cancer is a nasty, silent killer, and can only be stopped in its early stages if detected. A colonoscopy is a huge step in preventing that.

A good friend of ours, healthy, lots of exercise, bicycled everywhere, looked 15 to 20 years younger at age 70, was suddenly diagnosed with advanced colon cancer, and died within a few months of the diagnosis. A routine colonoscopy would have caught it far earlier, and he might well be still alive today if he had had it done. Colon cancer usually starts with just a polyp or two. Only if allowed to fester and spread does it get to the point where it is terminal. Don't put your life in danger by having a drastic form of the procedure done, but by the same token, don't put your life in danger by not doing it at all.

[csziggy]

19. I DID discuss all my health issues ahead of time

I carry to every doctor's appointment a print out that includes all medications, prescription and over the counter, all allergies, every surgery, every complication, and everything else I can think of.

When setting up this colonoscopy, the nurse went over all the stuff, asked a list of questions, and discussed lots of these risk factors. Then they sent off my prescription without telling what it was.

It wasn't until I was reading the labels and drug information sheets today that all the warnings about the risk factors came to my attention.

I had a colonoscopy some years ago, when I was younger, still had two kidneys and the original heart valve - but the prep did not clean me out enough and they couldn't see every

[DFW]

25. They should never fool with your medication qwithout telling you what it is

they tried that with my wife here in Germany once. After an operation, a nurse came in and gave her some pills to take. She asked what they were, and the nurse said she didn't need to know what it was, she should just take it. My wife went ballistic and told her off, and said she had no intention of taking some pill without knowing what it was. Hospitals are not infallible, and it is not unheard-of for them to give someone the wrong medication.

Having one kidney and a heart condition, needs to be taken into consideration, but there really isn't any alternative to a colonoscopy. Colon cancer is too silent and too deadly to give it even a small chance to manifest itself.

[csziggy]

26. Yes - your wife was correct to raise cain

My Mom was a RN and always told us what she was giving us, why, and what to watch for if something went wrong. My older sister had a lot of allergies and Mom did not want any of her children to have a reaction without knowing what it was. Aside from that, Mom and my oldest sister both had Raynaud syndrome (sensitivity to cold). After my sister had her first child her chart said all IVs had to be warmed. A nurse didn't do that and the circulation stopped completely in the arm with the cold IV. They had to wrap her arm with warmed blankets to restore circulation and did not use that same arm for IVs the rest of her stay.

***
I finally got a call back from a nurse. She said this stuff is actually very safe and does include the electrolytes to be safe. I told her the package warnings are pretty dire and scary for someone who had been through as many health issues as I have.

I am not terribly worried about colon cancer - but then, I wasn't worried about kidney cancer. I do believe in doing the tests the doctors recommend. Plus I have other colon issues that need to be checked out - that's why I am not doing the test that you just ship back a sample.

[DFW]

27. I would never do a send-in test, either

Not that I relish the thought of the prep and procedure, but it is the best way to have you looked at by someone who knows the danger signs to look for.

A friend of mine was in the hospital for some kind of operation (gall bladder? I don't recall), and while he was on the table, the surgeon(s) noticed that something was drastically wrong with one of his kidneys. It turned out to be cancerous and just about to spread. They removed it, but he probably never would have known he had kidney cancer until it was too late. He just celebrated his 80th birthday, and was probably given (so far) an extra 20-25 years of life due to that chance discovery.

[csziggy]

28. My kidney cancer was discovered like that - on the way to something else

I needed a new aortic valve but was not eligible to the non-invasive (Trans Arterial Valve Replacement or TAVR) method because I was low risk. I'd signed up for the clinical trial to get it approved for low risk which would have given me a 50% chance of the TAVR.

The final test before I could join the study was a CT scan to make sure my arteries were clear and large enough. The cardiologist called up a few days after saying there was a problem. He'd set up an appointment with a urologist who said I had to get the valve replaced before the kidney was removed. AS head of surgery of the hospital he arranged for the TAVR, then a month later took out the kidney.

I know how lucky I was - the cancer was asymptomatic, still very contained. There has been no spread, I didn't have to get chemo or radiation. If they had done the open heart surgery, they would not have found the mass on the kidney.

[Marthe48]

18. There is a non-invasive colonoscopy

If you want to read up on it, here is a link: https://www.mdanderson.org/publications/focused-on-health/colon-cancer-screening--colonoscopy-vs-virtual-colonoscopy.h25Z1590624.html

if you want to check it.

My best friend had a kidney transplant last year. If you can put off having a colonoscopy until the dr. can give you safe alternatives, I would.

I had a colonoscopy in Jan. I stopped eating solids at 7 PM Monday night ( a few hours earlier than the instructions said), then I was on a clear liquid diet the day before, and took 4 Ducolax tabs at 9 am and started drinking a gallon of gatorade mixed with 238 mg of Mirolax at 11 (in case that might be an alternative) When I had my check-up, the dr. said I had done a good job with the prep.

Whatever you decide, please let us know how it goes

[csziggy]

21. Yes - but you still have to have a clean colon *****UPDATE!

Though I wonder - I have to get screened for kidney cancer every year for the next few years (3-5 years after they removed the kidney in 2018). I wonder if they could combine that? The first year they just did an X-ray and an ultrasound. Last year they did an MRI and an X-ray.


UPDATE - The nurse finally called back - she said the prep the prescribed includes the electrolytes and should be very safe. I just did my first dose (gag!). Actually it wasn't too awful bad - Only only put in half the water they recommend, measured the dose, added ice cubes to get the water up to level and blended on the smoothie setting. Very cold, slightly foamy and not as disgusting since it's cold enough to freeze my taste buds.

[abqtommy]

20. I was scheduled for a colonoscopy. Then an aunt had the procedure and was hospitalized due

a perforated colon. Then I got instructions for the procedure plus being told to have someone to
drive me home. Then I canceled and I feel fine!

[Fla Dem]

23. That all should have been reviewed with you when the colonoscopy was first ordered.

Boy, someone really dropped the ball. Doesn't you Dr have your medical records?

[csziggy]

24. Yeah - see my response #19

I print up a new page of records each time I see a doctor (except my family practice doctor who sees me regularly and gets feedback often - I only print one for him once a year).

[Fla Dem]

29. Sorry did not read every response. But as I said....

Somebody seriously dropped the ball.

[csziggy]

31. When the nurse finally called back she said it was safe

The version of the prep they gave me includes the electrolytes so as long as you drink plenty of fluids, you're OK.

I told her that the package warnings are really scary and she agreed but reassured me. I'm doing the first half of the prep now, then have to repeat at 5 AM. That's better than with my first colonoscopy where they had me drink the entire gallon jug at one sitting and spend all night getting cleared out - at least I hope it is not all night.

[Fla Dem]

32. Well good luck. Having had several, the prep is the worst part.

[csziggy]

33. This may be the last time I put up with this

The recommendation is every ten years. If I do that, I only have to do it two or three more times, mx.

[smirkymonkey]

36. Good luck, csziggy, whatever you decide to do.

Get as many opinions as you can and use your best judgement. I hope everything turns out well for you!