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#395895 05/31/10 10:55 AM
Joined: Jan 2008
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Sue22 Offline OP
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first i'd like to thank donna (avonldy) for some wonderful advice in her recent post: colonoscopy instructions -from IBD sucks

the timing couldn't have been better and the advice, brilliant!

the things i found most helpful from that list on prep day were:

1. drinking that awful stuff very very cold
2. drinking that awful stuff through a straw.
i tried experimenting without the straw, impossible to get it down!
3. vaseline (for the other end). now i feel like this should be in the anal leakage thread! LOL! butt seriously, vaseline is awesome stuff. use prior, and keep using. even with that.....but without it, can't imagine.

ok, so prep day pretty much sucked, of course, but i got through it and survived.

something i wonder. the instructions on the "go lightly" says to drink 8 oz every 10 minutes. but my doctors instructions were every 20-30 minutes (to lessen the chances of gastro cramping and gas). i drank it every ~30 minutes. and honestly the first few cups not that bad; thought to myself, "no big deal." they say to drink 3-4 liters, whatever is needed, but at least 3 liters. by the last cup to make ~3 Liters, there was no getting anymore down. my husband made a good point. one's body develops an aversion to things that make us sick, and maybe spacing it further out, makes it harder to handle, not so much quantity of liquid as much as length of time. i don't know if drinking it every 10 minutes would be better. there has to be a better way!

the last thing you do is take 4 dulcolax right before bed.

warning: this next comment pretty gross. but if i hadn't known what to expect, i would have been completely freaked. bile is green, bright green. when things go through you quickly, the system doesn't have time to do things right and that green bile comes right out of your butt. i found this out about 8 years ago when i had a nasty gastro bug coupled with vioxx induced gastro difficulties, put that together and green bile coming out. i called the doctor on call completely freaked, that's when i learned that its not as scary as it seems. anyway, from 6:30-8:00 am, every 30 minutes. good thing it stopped because i had to get to the hospital.

molly, i want to comment here on your experience. i can not imagine prepping in a hospital vs my own home. i'm so sorry you had to go through what you had to go through. i could empathize before, but not in the way that i can now!

the procedure itself pretty anticlimactic. except for a few things to comment on.

the first thing they did was start an IV, vein in the hand or wrist. usually the needle hurts a little for a second or so and that's it. this time it really hurt! really hurt! i made a comment to the nurse, asked if it was because the needle was fatter than i had remembered and she said yes, so i laid there and just sucked it up. every so often commented about how much that IV was hurting, but trying to be a good patient and not complain. but my hand was going numb, then it was hurting all the way up to my elbow, then i noticed how swollen my wrist was becoming. so finally i told my husband that and he said to the nurse, "iv shouldn't be swelling up her hand and wrist, should it?" and the older nurse came over and took care of it. moved it to the other hand and told me that no, an iv needle should only hurt for the second it is going in, then there should be no pain. the first younger nurse had missed my "good veins" that she commented on how good they were. and when i told her it hurt and hurt, she kind of ignored it. so saline solution was going into my tissues instead of my blood stream.

moral of that story. we suck up pain so much that i think we just get used to it. so if something that really shouldn't be hurting is hurting, don't just suck it up the way i did, but say something.


they gave me a warm pack to put over it to reduce the swelling which after about 15 minutes had become pretty severe.

this is a note for LDN users: the normal drugs for a colonoscopy are versed and fentanyl. i had had those 3 times in the past with good effects (2 upper endoscopies, 1 colonoscopy) but that was before the LDN. i was planning on just taking molly's advice and stopping the LDN a day or so before the procedure so i could be given the fentanyl. however, there is another, in my opinion, better option, which i wasn't aware of. the gastroenterologist wanted to be on the safe side, so instead of trying to figure out how to deal with both LDN and fentanyl, which interact with one another, and without my having to go without my LDN for even a day, he set up the procedure to include propofol. its a deeper sedative than versed, and hence no need for the pain killer fentanyl. insurance usually wants the docs to use the versed / fentanyl because its cheaper because use of the propofol requires an anesthesiologist due to the deeper sedation. but if the doctor can state why its needed, its really a good option. rapid onset and the recovery time is even quicker as well.

so, i am wheeled into the procedure room, oxygen tube put on my nose, and the next thing i know, i'm waking up, wondering where i am. then realize. there was no getting drowsy. one second i was awake, the next, or so it felt, i was waking up.

while in there, they found 2 polyps in the large intestine and 2 small ulcers in the small intestine. and lately i've been having almost no symptoms. reason for it being done. in the fall very bad pain --> very bad gastritis --> very bad diarrhea, not digesting food, weight loss etc. but i was in too much pain to go in for a procedure. so, if they found that much when i was doing good, hmmm? was just reading that a colonoscopy should not be done during a flare of IBD, maybe i read that wrong, hmmm? i was actually quite surprised that they found anything, as when i developed my bad gastritis in 1993, the only thing the colonoscopy showed was cellular dysplasia, "not IBD but probably not normal". but of course that was a long time ago and at the start of my problems, only 30 at the time, now 47. i will be interested to see what the biopsies show. assuming polyps are benign or i'd have gotten a phone call. i predict the ulcers in the small intestine will prove inconclusive, like so much else. we'll see when i go to the doctors in a week for a followup.

so when i wake up, i tell my husband how great the propofol is, that its the way to go! and a nurse overhears me and says, "in any other country you'd be doing it without drugs" (don't know the truth in that statement, but still i'd take the drugs). then we had a short debate over the use of drugs in every day. she thinks we americans abuse drugs way too much and we should make due without so many drugs. of course me, the patient, thank goodness for drugs! though i wish i didn't need them, so glad i have them. afterwards, my husband thought that an entirely inappropriate conversation for a nurse to be having with a patient who had just come out of a procedure and was just commenting positively about my experience and my doctors. so glad my doctor and the anesthesiologist had more compassion. heart

the only other thing to mention. about 2 hours after returning home, had a lot of blood come out of my intestines when i went to the bathroom. called the doctor, he said it should be ok, but to call back if it was still going on in the evening; it wasn't. anyway, this did freak me out. it seemed like a lot of blood. but he did do a bit of cutting and a lot of scraping or so he told me. and oddly, though i typically go every day, took 3 days to go again, now about a week and a half, only every other day. so my body is still adjusting, but am making sure i'm getting lots of fiber and plenty to drink; that should help.

ok, think that's it, hope some of it is useful to oters.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Sue22 #395897 05/31/10 11:43 AM
Joined: Jan 2010
Posts: 839
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Originally Posted By: Sue22
a nurse overhears me and says, "in any other country you'd be doing it without drugs" (don't know the truth in that statement, but still i'd take the drugs).


I can vouch for the truth of that - no pain killers and no sedative for me.
For the rest of the presentation i've had a deja vu. But we'll get over it. All of us.


34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
Sue22 #395900 05/31/10 12:35 PM
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Hey Sue,

I had one colonscopy done about 6 years ago now... whenever I see someone post regarding their experience still feels like yesterday.

I recall the prep drink very well... yes, first two glasses not so bad, the you realize there is a whole lot more to drink. I could not imagine having to do this in hospital as well. I did at home.

I woke up during my procedure... I believe others were not knocked out for theirs from reading prior accounts. I could not imagine this as I was in pain when I woke up.

Take care,

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Sue22 #395957 05/31/10 07:46 PM
Joined: Mar 2008
Posts: 3,233
Dow Offline
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Yikes!

I've had two done, and they were sure a lot more pleasant than that!

I didn't enjoy drinking the Evil Juice, but it wasn't all that bad either, maybe all the years of lining my system with layers and layers of protective Starbucks Coating prepared me well? laugh2

And please, the next time you have a painful reaction to getting an IV, that is NOT the time to be polite!


Dow
Sue22 #395961 05/31/10 07:51 PM
Joined: Nov 2001
Posts: 18,187
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Very_Addicted_to_AS_Kickin
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Well, I wasn't knocked out for the colonoscopy last summer, but did have freezing of some kind because I didn't feel a thing. Mostly. They did knock me out for the endoscopy done at the same time (no, not at exactly the same time) because they knew the scope would end up splatted on the opposite wall if they tried to shove it down my throat with only freezing!!

I hope it all turns out OK.

Warm hug,s


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

Inanna #395979 05/31/10 09:40 PM
Joined: Feb 2010
Posts: 2,190
A
Major_AS_Kicker
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I have slept through all 8 of my scopes. I just can't imaging not having any meds with any kind of scope. My GI is so generous with the drugs. One minute I am getting prepped for the scope, the doctor comes in and says hello, chit chats a bit and then I am waking up in the recovery room. I never feel a thing.

I am glad your scope turned out so well.
Donna


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
avonldy #395983 05/31/10 09:55 PM
Joined: Mar 2008
Posts: 3,233
Dow Offline
Imperial_AS_Kicker
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This one has been posted before, but worth reading again, it's hilarious:

Dave Barry's colonoscopy

Warning Abba fans! laugh2

Last edited by Dow; 06/01/10 12:13 AM. Reason: Fixed spelling, oops, thanks rumble!

Dow
Sue22 #396000 05/31/10 11:24 PM
Joined: Oct 2006
Posts: 2,001
Major_AS_Kicker
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Posts: 2,001
I'm glad to hear it all went well, except for the green and red stuff coming out. Did you think it was Christmas or something?

I had a colonoscopy a year and a half ago. The prep was icky. I drank and drank and got more and more bloated, but nothing came out. And then I got terribly cold. And then it came out. And out. And out. But it was far from the worst thing I've ever gone through.

The next morning, I almost fainted when they took me from the waiting room to the place where they prep you. The nurse commented that I'm pretty small and they give everyone the same dose of that prep junk, so she thought I was probably badly dehydrated. She put the IV in right away and turned it on high and I felt better soon, so she was probably right about it being dehydration. At least the IV was in the right place!

I'll be interested to hear the result of the biopsy of the lesion in your small intestine.

Karen


I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me.

Thomas Merton



Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.

Emily Dickinson


Dow #396003 05/31/10 11:55 PM
Joined: Jan 2009
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Likes: 1
Supreme_AS_Kicker
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Awesome...I love Dave Barry! <giggle>


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
Sue22 #396006 06/01/10 12:35 AM
Joined: Apr 2009
Posts: 1,595
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It's *that time* for me too...

The other day I was at a get together of lots of beading/jewellery making ladies and the lady sitting opposite me is a survivor of bowel cancer (17 years...). Somehow we got onto the subject of colonoscopies and drinking bowel prep solution - eek2

Anyway, she told me that there is now new way of taking the bowel prep - in big horse tablet form. grin Apparently you take 65 tablets - 5 at a time every 10 minutes with some water. As a veteran of colonoscopies Christine swore this was the best way yet *by far*, so when I go to see my gastro soon I will be asking for more information on this method.

Watch this space for feedback - or does anybody else have experience of this method?

TIA,


Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3
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