Colonoscopy for PSP/CBD patients

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Colonoscopy for PSP/CBD patients

Postby Jvcephas » Fri Jan 23, 2015 10:12 pm

We were told my husband needs a colonoscopy because of a positive FIT test. He has never had one before. Because of the heavy constipation they want him to get regular before beginning the colonoscopy prep. Swiss Kriss was prescribed to get him regular. So far it has not worked. Two tablets a day give his short periods of regularity followed by a return of the constipation. If I increase to 3 tablets a day, he has intermittent bowel incontinence. I have had to clean him up in public restrooms!

My husband is six foot and very stubborn. He takes him a long time walk to the bathroom because of the stiffness, but refuses to go ahead of his feeling the need. Also because of the cognition issues, he does not recognize the need until it is too late.

Has anyone heard of facilities do inpatient colonoscopy prep? Is it covered by Medicare?
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Re: Colonoscopy for PSP/CBD patients

Postby Robin » Fri Jan 23, 2015 11:35 pm

My, you are dealing with a lot. I used to travel with heavy-duty gloves, moistened wipes, extra incontinence briefs, extra trousers, and garbage bags when going out of the house with my dad. Sorry to know you are in similar circumstances.

I'd discuss this with the GI doctor. Are they concerned the prep won't entirely clean him out?? What about "heavy duty" prep? I'm sure that there is inpatient colonoscopy prep for those admitted to the hospital who need a colonoscopy. I would think doing prep for a colonoscopy for your husband in the hospital may be as challenging as doing it at home. I'd certainly talk to the GI doctor about this "option" as well.

Can you and your husband psychologically tolerate the prep?

I guess you have to weigh colon cancer versus colonoscopy prep?? If it's found your husband has colon cancer, would your family decide to treat it?
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Re: Colonoscopy for PSP/CBD patients

Postby Jvcephas » Mon Feb 09, 2015 7:23 pm

Those are good questions. There is a lot of cancer among my husband's four siblings. Only two are still living. He may not want to treat it as he has a fear of hospitals. I think he is afraid of going in and not coming out. Refuses to use his life alert because he does not want to be taken to the emergency room.
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Re: Colonoscopy for PSP/CBD patients

Postby boxcar9 » Wed Feb 25, 2015 11:42 am


I don't know what the accuracy of the FIT test is. It is a test for fecal occult (hidden) blood.
If it is 100% accurate, then that's hard to ignore. But if it's only 50% accurate, maybe do another test?

Also, I think his risk of colon cancer depends on the incidence of colon cancer in his family. If there were other types of cancer, his risk could be less.
I didn't see his age, but I'm surprised that he has never had a colonoscopy before.

And, while the doctor is recommending one, any procedure for a person w/PSP/CBC, etc. must be thoroughly investigated before proceeding.

Have you talked to your neurologist about the use of anesthesia for this procedure?
I think further discussion is warranted with both the GI and neuro.

I don't know what stage your husband is in, but we have been strongly discouraged from anything that required anesthesia from the outset of diagnosis. I believe the risk of adverse side effects is quite high for someone with a cognitive brain disorder.

I don't know what percentages of people who test positive have a likelihood of polyps, cancer, etc. nor what is the general outcome for no treatment for those conditions.The Colon Cancer Alliance has published some tips for prepping that could make it easier:

This has a link to a "Sample Six Day Prep Guide".

Mom has a long history of problems & colon surgeries & when it came up that she had a problem (abscessed fistula-colon to vagina), the surgeon was "on the fence" about doing surgery because he was afraid she would never be the same after anesthesia PLUS the problem likely ending up with a permanent colostomy. With her lack of impulse control, having a permanent colostomy was NOT an option. We treat the fistula with daily antibiotic, not ideal but the heart wrenching choices never stop with this disease. (By the way, she did NOT have a colonoscopy to diagnose her problem--she had an immediate CT scan w/contrast solution--there was no cleaning out of her intestines. I also don't think this type of scan will show polyps, though.)

We, too, are in the constant battle of balancing the apple cart of constipation/diarrhea. It sucks! We can do the EXACT same thing everyday & end up with either & can never predict it. Of course, we try to ride closer to constipation because of the fistula & then there's the hemorrhoids! Right now, everything is giving her painful gas. She used to take metamucil daily years ago & it worked great. We don't do that anymore because I'm not confident I can get her to drink the entire glass of it & then there is the risk of having it swell in the esophagus if not taken with enough fluids.

Nobody wants to say the cold, bitter truth, but because this is a progressive brain disorder, there are worse things coming ahead. I only wish the doctors had scared the s**t out of me from the beginning. But, guess what, they don't really KNOW what it's like to LIVE IT! They see a patient for only 1.5hrs every 3 or 4 months.

Know that we are here for you.
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