Advice and support on upcoming Colonoscopy - Cure Parkinson's

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Advice and support on upcoming Colonoscopy

pdpatient profile image

Hi Forum Family,

I have been scheduled for a Colonoscopy at the end of the month and honestly, I am terrified. I have been under Anesthesia before and I have woken up after, struggling to breathe. But I was also 70 pounds heavier! And 15 years younger with no Parkinson's.

I put in a request with my doctor for postponement of the procedure with some lame excuse and I am waiting for the response. However, my wife and my daughter are insisting that I should get it done and over with.

What should I do? I would appreciate any information that you can provide from your perspective or experience and any words of advice or encouragement and even discouragement.

Thanks in advance for your participation in this conversation.

RKM

26 Replies

RKM, I am sorry to hear of your situation ... I have recently been advised to go directly to a colonoscopy (given family history of colorectal cancer). But was first told of the FOBT option (fecal occult blood test).

I have my own reservations about personally undergoing a colonoscopy. Apparently, people generally don't realize how easily and how often complications from internal nicks and tears can arise from such a procedure. Fyi, my dad is the one with PD in my family.

You've likely heard about FOBT already ... it is not as accurate as the colonoscopy, but one can take the FOBT every year:

mayoclinic.org/tests-proced...

Also, there seems to be a newer option (a DNA test). Again, not as accurate as a colonoscopy, but maybe if you were to combine the two (the FOBT and this DNA test), your family might put less pressure on you to undergo a colonoscopy, or give you more time to consider it:

mayoclinichealthsystem.org/...

I gather you were under general anesthesia before (to better prevent unexpected movements?). But maybe any tremor or dyskinesia could be controlled otherwise, and then maybe you could ask for sedation instead. This link goes into different levels of sedation and alternatives for colonoscopies:

ccalliance.org/blog/prevent...

All the best,

Kathy

Hello RKM,

From my experience i.e. a colonoscopy every 5 years since age 50 - I'm 69 - there is absolutely nothing to be afraid of. General anesthesia with Propofol is a breeze. They simply prefer you not to drive that day. Absolutely no pain.

The only danger is in not doing it, and let a benign tumor grow aggressive.

BTW, do you know this joke ?

It's before a colonoscopy. The surgeon says :

- Don't worry John, it's perfectly normal to have a boner during a colonoscopy

- I'm not John, says the patient, my name is Peter.

- I know, says the surgeon, John it's me.

pdpatient profile image
pdpatient in reply to Xenos

LoL😂😅

I had a colonoscopy about 5 years ago. There was no anaesthesia g just mild sedation, and I don't think I ever had that. You get to have a drop dead gorgeous nurse squeeze your hand and tell you If you need to fart just fart. They're pumping the gas in so they have to manage the gas escaping

My Dad put off and delayed his colonoscopy for probably 18 months. The resection went wrong, he was 12 hours in surgery for the emergency revision, which resulted in him needing a stoma bag fitted high.

By contrast, my mother in law, who did not delay had a routine procedure and after 3 years has been fully cleared of cancer

Get it done

Hi RKM, the procedure only lasts a short time, so the anaesthetic is very mild. The worst part is emptying the bowel beforehand 😫. I’ve had many over the years because of family history. Never a problem. Good luck.

Gwendoline

I understand your concern, but I encourage you to have the colonoscopy. I had one shortly after being diagnosed and was also very anxious about it, but everything went very well.

Pd, I had a colonoscopy at age 49 following a complete hysterectomy from uterine cancer. Having several surgeries both prior and after diagnosed with PD, anesthesia is hard on me trying to get my energy back but with my colonoscopy it was more of a twilight not complete general anesthesia. It was no problem. My advice when you have to drink the prep , put ice in it, followed with a glass of ice water. Don’t postpone the colonoscopy. Take care. Karen

I had it in 2018 and it wasn't a big deal. Actually, after cleaning my gut system all the PD symptoms went away for few days.

Thanks everyone for responding so far and I see that the advice to get the procedure done is unanimous. I still welcome more opinions. However, I have decided to keep the date.

RKM

My Mother had a colonoscopy several years ago, age 69, and her colon perforated, had to have emergency surgery and wear a horrible colostomy bag until she was strong enough to have the reversal surgery which thankfully went well so there’s no way I could recommend having a colonoscopy. I can’t believe they say it’s rare that this happens. That’s a load of crap (no pun intended). Just google the numbers.

Yeah get it done. It's not near as bad as you think, I was all worried about it too but turned out okay. And as a bonus, if they clear you, now they will not recommend 5 years, they'll recommend 10.

pdpatient profile image
pdpatient in reply to MarionP

Good to know.

I have also put off having a colonoscopy. My last and only one was a little after I was diagnosed, 9 years ago. In addition to anesthesia, I'd also be curious about people's experiences with the prep. Since C/L is absorbed in the small intestine, I am worried about the 24 hours before and right afterward in terms of meds being washed out before they are absorbed.

I am having my first in two weeks so I can't be too much help, but I was asked whether I wanted full sedation or a "twilight" so if that is a concern than you have the option of being awake for the procedure

pdpatient profile image
pdpatient in reply to Missy0202

Wow. They must be getting better. Mine is at Stanford University Hospital, so I’m confident that at least the best are putting their hands on me (assuming), although at some point they have a student or fellow assist/learn 🤔

RKM

Hwp has had several, and last time he felt really good afterwards, as though his PD was in remission for a day (perhaps from the propofol??). If you get a good experienced gastro and anesthesiologist it’s over in less than an hour and you shouldn’t have issues…just tell the anesthesiologist about your prior experience.

If you have constipation and delayed gastric emptying, as many with pd do, you will need to make sure they give you extended prep, starting the fasting and laxatives a day earlier than most people. Otherwise the colon will not be clean enough prior, and they’ll make you do it again in a year or two. My poor hubby is in a cycle of needing them every couple of years, cause it’s impossible to get his prep to be complete and he’s susceptible to polyps.

Good luck! If you need to do it, it’s not too bad!

Yes yes yes you will be amazed--it really is no big deal. First of all, they do not use true general anesthesia, they use light propofol, but you will FEEL like they use general because you will think you are totally, completely asleep. You will not know what is going on. You will wake up and be amazed. (If you WANT to be awake, and know what is going on, you can ask to be, but then I, personally, will think you are nuts :o)

(Disclaimer: my DH is an anesthesiologist.)

Because the anesthesia is so light, you should not have too many after effects. What makes people feel draggy afterwards is the prep, which can take a lot out of you. Unfortunately, if you have PD and tend toward constipation, the prep is longer. (BTW, of course make sure to tell your GI doctor AND your anesthesiologist that you have PD. As my husband says: it's his JOB to know how to take care of folks with various conditions, but he can't if he doesn't know.)

Just FYI, I (probably alone in all the world) find the prep amusing. I think it's interesting to poop clear water. It's also great to have completely empty bowels for like three days after.

Just sayin'.

My husband will answer more questions, if you have them!

Go for it. I've had several. Two since being diagnosed with PD. No problems.

Absolutely nothing to it! I have had several, the bowel emptying before it is not very pleasant, but the procedure is nothing, you wake up feeling great .

I too am overdue a colonoscopy. I was hesitant until reading the posts above. My brother in law is currently fighting cancer that has spread from his bowels. He had never had a colonoscopy. His original tumour was discovered with a fecal occult test. He had not had any symptoms. A colonoscopy could have prevented his disease!My sister just had her first colonoscopy and was encouraging me to have one. She said she’s now a bit “anal” about it.

I understand your concern. I woke up during abdominal surgery 22 years ago (when I was 42 and before I got PD). I felt the knife about to cut into me. I couldn't move or speak and put all my effort into trying to lift my pinkie. Apparently I groaned and they gave me more anesthesia and I was out. Anyway, I've had several surgeries since and have always spoken to the anesthesiologist before the day of surgery and again on it (if it was a different one). I've never had a problem since. I hate colonoscopies because of the prep, but the surgery itself is nothing. I postponed a colonoscopy this year because I had knee surgery and was afraid I'd fall running to the bathroom during the prep. PD and a bad knee and major laxatives at the same time isn't a great plan. So if your balance is not great or have bad knees yourself, I suggest you position yourself as close to the bathroom as possible during the night when you're prepping. But go for it. Get it done and know you're OK. Best wishes in having an easy time with it all.

Lionore profile image
Lionore in reply to Ccihelka

I was embarrassed to leak watery fecal matter on the sheets the night before the procedure especially since I was in a fairly new relationship back in 2008 when I had my first and only colonoscopy. That guy is still here and today I would have no such concerns since he has nursed me through some pretty serious illnesses. On the other hand, back then I wasn’t diagnosed with Parkinson’s. Today I too would be a fall risk trying to rush to the bathroom. A better solution would be to wear an adult diaper. I was told to get another colonoscopy in ten years so I’m late but do the FOT yearly. I didn’t realize that if I did have the colonoscopy I’d have to do two days of prep. Wow.

A nice comparison of the different options....cdphp.com/-/media/files/pro...

Often colonoscopy is done in a clinic or doctor office setting (with an extra $500 facillity fee)) but a higher risk one should be done in a hospital setting. You will be OK as GERD and other things that might cause choking are generally something the doctors can handle. Colonoscopys save way more lives than any other procedure so my advice would be to proceed with the caution I mentioned and clue in the doctors in advance to be on the lookout. If you die when under general anasthesia, that seems like a better way to go than aspiration pneumonia. Best wishes!

pdpatient profile image
pdpatient in reply to pmmargo

HI pmmargo

You seem to have accepted that aspiration pneumonia is a given for all Parkinson’s patients at EOL. I hope that is not true for all PwP, although I have read that it is the case for some. Specifically for those with significant swallowing issues.

Thanks for the advisory on the colonoscopy. Spot on with the consensus from the other responses here.

RKM

I’m sorry PD patient. I know it’s scary. If it helps, recently a friend of mine had one and you love this, she said it was very relaxing. I don’t think she meant the prep of course but she said she finally got some good sleep during and I guess a little bit after. So she felt rested and cleansed. I know that’s probably unusual but I thought it sounded sort of nice. Another friend was absolutely terrified of it and she was fine. I know this wonderful disease is a whole level of complication though. But once it’s done it’s done and you’ll be a hero!

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