Colonoscopy(2)

John1965

PCP ordered a colonoscopy for DW at her recent physical.

She's six years into this disease and stage 5.

Should she get the test or not?

ButterflyWings

That's a no for me. Why do a test like that now? If we found something, we wouldn't operate.

With my DH's AD, we know he already has a particularly cruel, terminal disease. If something else takes him first, many on this forum have said that would not be the worst thing.

I also learned here that the anesthesia meds can cause additional irreversible brain or memory loss. So, it would likely do more harm than good. It just isn't worth it. We are not doing any more invasive, elective procedures for that reason. My DH's PCP agreed when we discussed last week that they need to take him off the "well-clients'" automatic scheduling for colonoscopies and anything else really. I think of us as being on unofficial palliative care (learned that word since diagnosis) which is comfort care and pain management, treatment only for things like UTIs or other infections that can be easily controlled with oral meds to prevent worse conditions like pneumonia or sepsis, etc.

He is 80 and stage 6 AD, most importantly. It continues to go downhill from here and I don't want to put him through the unnecessary stress of trying to cooperate with a medical procedure he doesn't even need, because the medical community applies a general template to everyone.

Rescue mom

I agree with butterfly wings. The only difference I might make depends on how old your DW is. If she was 50, I might—might—look at it different than if she was 70+. In general, if over 70 or so, I’d say no. So many of these Dx tests are just driven by formula and fees, not the individual circumstances.

harshedbuzz

John-

This is a tough call. It might be easier to make were your wife stage 6 or even if she were older. I think the critical piece to this is "What do I do with the information?"

There was a gentleman in our local support group who faced this dilemma with his dear wife who was stage 6ish at the time. He was a retired surgeon and they were both in their early 80s. He decided to do the procedure as his dear wife had always been proactive about her health; the prep was horrific for them both and she did not do well with the actual procedure or in the days after. The results showed some issues that needed extensive surgery with general anesthesia, several days in the hospital, pain she wouldn't understand, etc. He had concerns about further decline with anesthesia as well as hospital delirium. He sought out advice from his pastor and also a medical ethics specialist and decided not to proceed. 

My thoughts are with you as you decide.

HB

banpaeng

The advice given above is very good.  To be honest, I do not know why the medical profession even suggest such test.  All it does is put the caregiver on a guilt trip so DR can make a buck.  When I would go to the Neuro, he would adminster the 30 question test.  I would spend two weeks getting her to quit thinking about it.  Last time she scored three.  I told him never again.  He actually agreed.

I know this is direct, but I would call them back and say he__ no!!!!!!!!!!!!

Lorita

Hi John,

 I'm with the others.  Besides the procedure itself, there's the prep that's not easy for anyone to do.  My doctor kept talking to me about a colonoscopy and after I talked with the doctor who would do it, I decided that was not for me.  I opted for Cologuard.  There's no prep and easy to do right in your own home.  Your doctor orders it, it's sent to you by UPS and when you get the test done you call them and UPS comes and picks it up.  You get the results in a few days and that's it.

 Charles had some colonoscopies and it was very hard for him to do the prep even before dementia.  Do the Cologuard.  If you're unsure about it, talk to your doctor.  Mine agreed that was the thing to do.

JDancer

No, No and No. The prep is difficult for anyone, I can't imagine putting a  LO with dementia through it. If my DH's PCP suggested it, I might consider finding a different doctor.

amicrazytoo

NO! Period. Does her Primary Care Doctor have an inkling of caring for a person with Dementia?  

JJ401

DH’s primary care doc brought this up at his last appointment. I said, “he’s 77. He’s never had a polyp. I thought the new guidelines were that one could stop after 75 if they have never had a polyp.” Doc then said that he could skip it with no mention of a less invasive test.

The prep would have been a nightmare for DH. No way was I going to put both of us through that without speaking up. At 77 without ever having a polyp, the risk of the colonoscopy is greater than any possible benefit.

Primary care docs seem to have a checklist of tests. More get added as you age, but subtraction is often not happening. And consideration of dementia is negligible. Spouses/Caretakers sometimes have to channel their inner Nancy Reagan and just say NO.

LadyTexan

I would not have DH go through the procedure. DH is mid stage 6.

If the doc had a specific concern, not just routine screening, I would ask if the Cologuard Home kit would serve the purpose.

 https://www.cologuard.com/?gclid=EAIaIQobChMInYvHoMXR8AIVix-tBh05yADGEAAYASAAEgKcEPD_BwE&gclsrc=aw.ds

M1

Speaking with my doctor hat on:  NO.  She/he is not thinking it through.  The prep alone will be almost undoable.  And the others have already said it:  what in the world would you do with the information?  It's not like she's bleeding or having any symptoms, right?  So this is purely a screening procedure, requiring anesthesia, risking bowel perforation:   I absolutely would not do it.  

I've had things like this come up before:  I had a woman with inoperable lung cancer ask me if she needed a mammogram.  Folks just don't think sometimes.

dayn2nite2

No.  And don’t let the doctor talk you into doing the Cologuard test, because huge false positive rate, they will hound you into doing a colonoscopy anyway.  Refuse all invasive testing.

Ed1937

I'm not going to be the one to break the trend. My wife has had breast cancer twice. She will not get another mammogram. So "no" is my answer too.

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Pooh Bear

John,

My response is a definite NO!!!  My DH's PCP is also having the radiology department call regularly every 3-4 weeks to "schedule" DH's colonoscopy because he had a positive occult blood result on a fecal smear test.

The main reason we are dealing with dementia now ... in my opinion, and some of his doctors have agreed, started because of ANESTHESIA      during a total knee replacement surgery.  He went into surgery with (most) of his cognitive abilities intact other than very hard of hearing.  Ge woke up a totally different person.  They want to do an MRI to look for signs of a stroke during the surgery (which was 19 months ago) but no matter WHAT the MRI would show, it would not alter or change his treatment or prognosis one bit.  

Had it not been for that blasted knee surgery, we very well may not have dementia to live with now.  NO MORE ANESTHESIA.  NO MORE INVASIVE TESTS OR SURGERIES.

But it puts the feelings of guilt on me when our son (and others) suggest "there may be other ways to get the test done without anesthesia."  Are you kidding me now ??  Like so many others have said, the prep alone would be near impossible to accomplish.  He wouldn't understand.  He would not cooperate.  And more than likely would just flat refuse to do it, becoming aggressive if encouraged any further to "drink that nasty prep liquid."

So I agree.  Don't put yourself or your LO through that.  It's just not worth it at this stage.

Good luck and God Bless

Last Dance

My wife had 3 sisters die of cancer, and one who is a cancer survivor, She is the only one in her family with dementia. Even with the cancer risk I had decided early on that I would not give her a colonoscopy. I felt that the prep alone was more then either I or her could handle. Its bad enough for a normal person to do, but for someone who really doesn't understand what id going on it would be miserable, and putting a person with dementia under anesthesia is not a good idea. Linda was going to die anyhow and there was noting I could do to stop it, so I was not going to put her through more hell then what she was going through. The last 2 times I had her in the ER were bad enough for her and I had decided that no matter what I would never take her back there again. Sometime the treatments are worse then the sickness they are trying to cure. Do not let your Doctor or anyone else guilt you into this one way or the other, we on this board are give you some advise from experience, but in the end you are the one that has to live with your decision what ever way you chose. God's Blessings to you Richard

 

June45

Last Dance wrote:

Sometime the treatments are worse then the sickness they are trying to cure. Do not let your Doctor or anyone else guilt you into this one way or the other, we on this board are give you some advise from experience, but in the end you are the one that has to live with your decision what ever way you chose. God's Blessings to you Richard

Totally agree with you Richard.  Many of you have read or at least heard of this book:

Being Mortal: Medicine and What Matters in the End by Atul Gawande

I also vote "no" on colonoscopy.

Lills

My 'vote' may seem stronger than others:  Absolutely not!  To me, having this disease is bad enough.  At this stage, it seems to me to be palliative care.  The BEST of palliative care!  Make every day as pleasant as possible.

David J

No colonoscopies, mama grams, or other uncomfortable tests!  It’s hard enough getting blood drawn and getting a urine sample. My wife can’t follow simple directions any more and doesn’t understand why she has to do things. The last colonoscopy was 4 or 5 years ago. I forced her to do the prep correctly, and the exam went ok, but never again. The PCP agrees.

John1965

Thanks for all of the replies.

I sent a message to DW's neurologist on MyChart asking her opinion. She agrees with all of you. There is no worthwhile upside to testing.

We've been going to our PCP for 29 years, and he's always been very good. But he doesn't seem to know much about AD. At the same checkup when he ordered the colonoscopy he asked DW, "so how's the memory thing?" She responded, "it's fine." I could have challenged him at the time, but the only outcome would have been hurting DW's feelings and creating a days' long melancholy.

Pooh Bear

John1965 wrote:

Thanks for all of the replies.

I sent a message to DW's neurologist on MyChart asking her opinion. She agrees with all of you. There is no worthwhile upside to testing.

We've been going to our PCP for 29 years, and he's always been very good. But he doesn't seem to know much about AD. At the same checkup when he ordered the colonoscopy he asked DW, "so how's the memory thing?" She responded, "it's fine." I could have challenged him at the time, but the only outcome would have been hurting DW's feelings and creating a days' long melancholy.

John1965:

The stupidity of some doctors just never ceases yo astonish me.  "How's the memory thing"?  What a ridiculous, demeaning, unsympathetic thing to say.  He obviously has NO CLUE.  I'd be looking for a new PCP.  Preferably a gereantologist who understands dementia and cognitive disorders.

1962ART

Thank you to everyone who responded.  You responses were so helpful to me.  DH is very high functioning, but we are living in the "here and now" world, where there is very little long term or short term memory.

His last colonoscopy was horrible for us both.  Because of the medication and dementia, he could not tell me why he felt so uncomfortable following the procedure.  He kept saying he felt cold so the doctor turned the heat up.  The nurse explained that he had had polyps removed and he felt damp just from the fluid used in the procedure.  As we took off the covers to go home, he was adrift in a sea of bodily and surgical fluids.  The mess was extensive and he was covered from the waist down.  He was confused.  I was mortified and so angry.  He was given a washcloth and tiny towel to clean himself up at the sink until we could get home and get him in the shower.

I was and am (as you can tell) very mad at the hospital. Your posts helped me understand that these procedures just are not appropriate for our LO's.  Polyp history or not, I am going to have a long think before I ever put him through this again.  Thank you so much.

McCott

NO, NO -- like everyone else, I say no.  I truly don't understand the blindness of MDs in the face of ALZ.  My husband was a type 2 diabetic, stage 6 and they went aggressively after his blood sugar level, piling on lowering medications with no instructions to monitor blood levels. So one night he passed out from low blood sugar (44 at ER), pulled me down in his hypoglycemic faint, broke my back which went undaignosed for months because "he" was the IP = Identified Patient.  I have sence had two surgeries to reconstruct my back and will live with major back pain for the rest of my life, always fighting for some minor level of pain relief while being lectured on becoming a teenaged drugged out street walker.  Hah!

When MDs can't deal with something, they just default to something they can deal with.   As usual people on this site know more than most of the doctors about ALZ.

My husband died last Sept after "only" seven years and my heart goes out to all of you who have been on this treadmill for so much longer.  It is a nightmare, as you know, and only we know.  The rest of the world just doesn't understand it, lucky for them.

Miss you all at times - other times just glad to be on the other side of that deep dark valley.

Mary