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After 20 years - how often do you c-scope?

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Ulcerative Colitis
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 9/30/2020 11:11 AM (GMT -7)
Hi guys, Long time no talk, which means life has been busy and I haven't been flaring. YAY! I have my cscope on the 15th and have to do the dreaded all the up to my brain covid test before and then the dreaded prep(with anti-nausea and anti-anxiety pill). I have had UC for almost 23 years. EEKKK.... HALF OF MY LIFE. Crazy. I hate c-scopes. Literally start having anxiety months before my appointment. For those that have had UC a long time, how often do you cscope? Obviously cancer is worse than a cscope. I am not stupid to want cancer, but ugh..... I had my last one a year ago but switched from UCSF to Stanford(due to major quality of care issues and c-diff) so my new doc wants me to scope. I typically only do every other year... How often do you guys?

Hope everyone is hanging in there and doing ok. 2020 really is the crappiest(pun intended) year.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2399
Posted 9/30/2020 11:58 AM (GMT -7)
I am 12 years in and have scopes every two years. I have family history of colon cancer so I know I need to do them. But I am same as you, I dread them so much and it builds up as I get closer and closer. It's prep dread in my case. I have so much trouble with the prep not working. For my last scope I had to do a three-day prep. It worked at least, but it was pretty bad. I hope I don't get to a point where I have to do one annually.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5433
Posted 9/30/2020 10:18 PM (GMT -7)
Hi, *Jen*! Stanford Med Center is closer to your home, right? So that should reduce some of your pre-scope anxiety. I just had my 40th anniversary of UC DX on Sept. 12. For the 1st 5 yrs my doctor constantly pestered me to scope; it was the "let's take a peek"-era. How I hated that! Probably the main reason to repeat was that my initial c-scope turned up 2 polyps. During the past decade my gastro of 30 yrs has gotten very involved treating the worst cases, patients on several different biologics + clinical trials for new biologics, which takes the heat off me 'cause we found my saving med during a 2002-3 clinical trial for Colazal. Plus, thankfully, I didn't grow any new polyps so I was able to get away with a 5 yr interval, having just one flex-sig. Had c-scope in 2013 then acquired a malignant (non-hereditary type) endometrial tumor in 2015, which required trans-abdominal surgery (yuck!) ; then I was busy with gyn-onc check-ups that took precedence over everything so I didn't c-scope again 'til 2019. *** Can you use the Miralax/clear liquid mixture to prep? I've done that for my 2 most recent c-scopes & found it much less troublesome than the older purges. *** BTW, how are your children? I remember that you wrote us yrs back when your daughter had just kicked her 1st soccer goal, fun to read! / Old Hat (40 yrs with left-sided UC; presently in remission taking brandname Colazal)
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geezernow
Regular Member
Joined : Nov 2017
Posts : 213
Posted 10/1/2020 6:12 AM (GMT -7)
Hi everyone! Like Jen, I'm in remission so haven't posted in a while. I've had UC for 24 years and now have scope around the 2 year interval. Good luck and relax all ya can.
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quincy
Elite Member
Joined : May 2003
Posts : 32483
Posted 10/1/2020 9:33 AM (GMT -7)
Coming up to 32 years since diagnosis and age 66...and November will be 1.5 year interval. I might just stay there.
q
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tap
Regular Member
Joined : May 2008
Posts : 475
Posted 10/10/2020 6:58 AM (GMT -7)
I'm 22 years and 17 colonoscopies into this journey and I have a colonoscopy every year.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8585
Posted 10/10/2020 3:43 PM (GMT -7)
i have one anally or every 20 years - whichever comes last -

TT
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 10/12/2020 4:55 PM (GMT -7)
So great hearing from some of you familiar folks! Glad to hear everyone is trucking along. Yes I switched to Stanford which is 10 minutes from my house. I feel so spoiled. Did my drive through covid test. Crap. Not gonna lie felt like they went up to my brain. But after what we have been through 10 seconds is nothing, right? Since Stanford hasn’t done a c-scope they wanted one but I am going to try to do every 2 years+. 5 would be a dream!! Turd love your response.

Quick prep question. They told me to go on low fiber for 7 days(no raw veggies/fruit and nothing with seeds). Never did this before. Do you guys? My appt is at 10am, checkin at 8:30am. They want me to split prep. What time would you guys do it? 3pm and 3am? I wasn’t very cleaned out last time even though I followed all instructions so now I am a little nervous. I don’t want to have to repeat!!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 891
Posted 10/13/2020 8:01 AM (GMT -7)
I was told no seeds for 3 days before but other than that no diet restrictions.

I did split prep. Started at 6 pm night before. My appt the next day was 1 pm so I didn’t start prep until 9 am that day. I only did 2/3 of 2nd prep because I was cleaned out the night before. That stuff works a little TOO well on me. Instructions are to start 2nd prep 5 hrs before arrival time.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5433
Posted 10/13/2020 11:14 AM (GMT -7)
Yes, *Jen*, my gastro always wants patients to avoid nuts, seeds, & corn for a week prior to scope, also red & purple juices/liquids for a couple days before prep. So I don't think your instructions are especially strict. RE split prep, we recently discussed the timing for that on Serenity Now's c-scope thread-- about a month ago. Definitely look for it because starting prep earlier was recommended by most of us who replied. (Loved your comment about COVID swab reaching up to your brain!) / Old Hat (40 yrs with left-sided UC)
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2399
Posted 10/13/2020 12:00 PM (GMT -7)
Hi Jen! I too have lots of problems with cleaning out for c-scopes. I have always been instructed to avoid things like seeds, etc, the week prior. This time I went beyond the instructions and ate completely low fibre for the week before. I think it helped. Yes I agree with the advice to start the prep earlier than what your instructions say. I think the split prep works better than when you do both doses the same day just a couple hours apart. I will find the thread Old Hat mentioned and bump it up.
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 10/13/2020 5:07 PM (GMT -7)
You guys are all the best. Oh and old hat my kids are now freshmen in HS and 6th grade. My daughter has moved on to field hockey but hoping she does swim team in the spring too. So fun to hear how everyone’s lives are going. Ok my appt is 10am on Thursday. I am going to stop eating after dinner and a snack tonight. Will read the other thread to figure out when to start prep. Thx!!
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 10/13/2020 5:19 PM (GMT -7)
Ok read the post but it had lots of topics in it. So if I am nervous about prep and my scope is 10am Thursday. Would you do 3pm and 3am?

Got my anti-nausea and anti-anxiety pills ready. My new GI was a bit surprised by the anti-anxiety request but this old dog needs to take the edge off after 20+ years of prepping. The struggle is real to keep the panic at bay. No shame in a pill. If you are reading this and need to hear it...ask your doc for an anti-anxiety pill!!!
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5433
Posted 10/13/2020 5:39 PM (GMT -7)
I would recommend starting the prep by 2 PM. The goal is to pass clear fluid only rather than any kind of D or yellowish gook. So if you see things clearing out by 11 PM Wed you might even be able to get a bit of sleep by also moving 3 AM dose to an earlier time. Good luck with it! We're here for you ... / Old Hat
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2399
Posted 10/13/2020 7:35 PM (GMT -7)
Oh I wondered about asking for an anti-anxiety pill... but then again they make me sleepy and if I am sleeping, I'm not drinking liquids! Well maybe I will ask her about it anyway and see what she says.

Well good luck with it all, *Jen*, and let us know how it goes!
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noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 378
Posted 10/13/2020 11:00 PM (GMT -7)
The recommendation from the Crohn's and Colitis Foundation of America, and my GI/colorectal team, is annually unless you've been in remission a long time and then every 2 years.
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 10/14/2020 2:08 PM (GMT -7)
Ok read the post but it had lots of topics in it. So if I am nervous about prep and my scope is 10am Thursday. Would you do 3pm and 3am?

Got my anti-nausea and anti-anxiety pills ready. My new GI was a bit surprised by the anti-anxiety request but this old dog needs to take the edge off after 20+ years of prepping. The struggle is real to keep the panic at bay. No shame in a pill. If you are reading this and need to hear it...ask your doc for an anti-anxiety pill!!!
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5433
Posted 10/18/2020 1:03 PM (GMT -7)
How did your prep & scope turn out, *Jen*? / Old Hat
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 12/9/2020 11:12 PM (GMT -7)
You guys are going to totally laugh. Did the first half my prep and set my alarm so that I would wake up at 5am and do my second. I slept through my alarm(likely due to the anti-anxiety pills) woke up at 7am in a huge panic. Chugged my prep, projectile vomited it, got half down. Called the nurse and told her what happened and luckily she said no problem. Finished my prep and went in. They were behind(I heard the nurses talking and someone took way longer because their prep was bad) so I was nervous but it was totally fine. I need to post my results. It sounded all good but my doc is on leave for required education units so can’t talk to him until January. I will set THREE alarms next time. What a panic!!
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 605
Posted 12/9/2020 11:19 PM (GMT -7)
Just read the results again. They went up to the terminal ilium and biopsied every 10cm. They said everything appeared normal so I am assuming no polyps. I will f/up with my doc when he is back but I am hoping to push off to two years.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2399
Posted 12/10/2020 6:57 AM (GMT -7)
OH no, I can well imagine the feeling of panic when you slept through your alarm!! Whew, what a relief that it turned out so well in the end!
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quincy
Elite Member
Joined : May 2003
Posts : 32483
Posted 12/10/2020 10:23 AM (GMT -7)
Yikes...panic mode. Great all went and is well!
q
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1550
Posted 12/10/2020 10:27 AM (GMT -7)
That's good scope news!! Congrats!
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5433
Posted 12/10/2020 9:00 PM (GMT -7)
Gads! When you didn't reply post-scope in October, I thought you might still be asleep from the anti-anxiety pills ... LOL! Glad everything worked out, *Jen*. / Old Hat
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LondonRed
Veteran Member
Joined : Oct 2007
Posts : 1258
Posted 12/14/2020 6:16 PM (GMT -7)
After 13 years with it I have a scope every 2 years and they found a 2mm polyp the last time and so yes a little scared.

I have my next one tomorrow (Tuesday). The reality is if you had a scope a year ago; and there were no polyps it’s highly unlikely you have any sinister polyps or anything other than inflammation a year later.

I read that polyps take over 10 years to fully grow so surely a 2 year colonoscopy somewhat prevents any new ones from growing bigger?

Would love to hear people’s thoughts.
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