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Colonoscapy questions

janaes
Posts: 781
Joined: May 2016

Hey every one,

Just need to give a little update. I went and saw my radiation doctor today for my check up. For those that dont know its been a few months past two years since i finished treatment. Ive been NED since. He says everything looks good. He gave me a pelvic exam and looked over my cat scan i had last november. He too said it looked good. Same news i got from the assistant at my oncologist office in november. They both agreed that there was some thickening in the scan. I cant remember where it was but it was associated with my blatter. So he told me he wanted me to get a colonoscapy (sp).  Im 46 i will be 47 this summer.  He told the age for all people to get a colonoscapy is 45 now not 50.  Has any one heard of that.  Any ways he said he wants it done for two reasons. One is that im past forty five and two because of all the radiation ive had could be a reason to get another cancer. I dont know if he even remembers that i didnt have external radiation this time. It was my cancer twenty plus years ago that i had the radiation. Any was im sure im going to do it anyways.

Just wondering from you guys what you think of this and any of you who have had a colonoscapy would you mind telling me about it.  He says the revovery is a breeze and l want to know your experiences with that. 

Thanks you guys

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

I also had thickening in the bladder and rectosigmoid colon, felt to be consistent with radiation, vs just not well distended at the moment of the scan. I didn't get sent for colonoscopy over that ... I was told my CT was fine. I'll be curious to see how my next one compares. 

 

I have heard that age 45 is recommended now. Can't say that my HMO has changed to that yet. I do know that different agencies make different recommendations, and some are conservative and some are not. 

 

Radiation does increase the risk of CRC (colorectal cancer), but my understanding is that this is usually a later complication (like after 10 years), and that extra screening isn't necessarily recommend, but to definitely be on top of any symptoms and not just assume it's radiation side effects. 

 

I just had my first colonoscopy a couple weeks ago. Prep isn't fun, but there are a number of different types, so it's hard to advise.  However, i will say make sure you fully comply, as an inadequate prep makes the colonoscopy miss things.

 

Pertinent for us endometrial cancer women - previous pelvic surgery causes adhesions and makes the procedure more difficult. My GI had to switch to a pediatric colonoscope, use a stiffener, and also have the nurses push around on my abdomen. Uncomfortable and not pleasant, but not horrid. I had sedation but not so much that I couldn't watch the screen and remember it all, and I would choose that again. 

 

Good luck!

zsazsa1
Posts: 356
Joined: Oct 2018

I've had both colonoscopy and upper endoscopy done with NO anesthesia - no nothing.  It was a breeze.  Honestly, the prep is the worst thing, and the prep I've done is very easy.  (Miralax).  Just have it done.  Don't worry about it.

zsazsa1
Posts: 356
Joined: Oct 2018

And BTW, my colonoscopist, who was recommended by a GI doc who trained under her, always uses a pediatric sized scope.

Forherself's picture
Forherself
Posts: 240
Joined: Jan 2019

I had one 3 1/2 months after my hysterectomy.   I think the prep is inconvenient, nothing more for me.  I was out for most of it.  The nurse explained to me that I might regain consciousness during the procedure, but shouldn't feel any pain.  They would give me something if I needed it.  But I found that the warning worked and I kind of enjoyed watching the screen.   I was the last patient of the day so they wanted to get home, and I understand that.   Some oncologists think there is a link between colon cancer and endometrial cancer.   I would go ahead and have it done.  One thing I was not prepared for, was diarrhea for about a week after the procedure.   The watery kind.  I was about to call the gasto office, when my cousin said she had the same thing.   It was worrisome.   But went away.

 

janaes
Posts: 781
Joined: May 2016

Thanks for the info everybody. Im waiting for a call from the place that sceduals it. The nurse told me to not worrybabout having the colonoscapy until they call to scedual it.  I was a little shocked by the doctors request so i am not ready to dit quite yeat.  I have a week off work next month and could do it then an get the darn thing over with.  

One more question. Were you guys able to drive home from your appointment after?

That will help me know when i can do it.

Thanks again

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

You cannot drive home IF you have sedation. 

MAbound
Posts: 889
Joined: Jun 2016

Whatever prep they give you, you are going to want to be home from work when you start it. If they want you to start at say 1pm, you may need to take half a day off besides the day of your test. Some have you start after 4pm because they know people are working, but then you're potentially up later into the night running to the bathroom.The diarrhea the prep induces is pretty forceful without much warning and will be more than once. That's why everyone hates the prep more than the test itself. Even the Miralax solution is concentrated from what you normally take and you need to drink 2 quarts of it in a short period of time and that's not so easy when you get towards the end of it. Other preps have you drink a gallon of a different solution or drink 2-3 bottles of magnesium citrate. They all work, but are a chore to get down. 

You can have the test with just sedation or anesthesia depending on your preference or needs. They will not do the test if you don't have someone there with you either way. I've had both, with the anesthesia this last time, and it made me incredibly dizzy the next morning when I tried to get up. It passed quickly, but I've never experienced that before and think I'll have just sedation the next time. If you have nothing, you run the risk of nausea and real discomfort during the procedure, but I think you have an IV in for just in case and they could fix that for you during the procedure if it's needed. The test itself is a cake walk for the most part, but having it for the first time is always the hardest because it's hard to believe that until you go through it.

SF73
Posts: 277
Joined: Oct 2017

I wonder what happens to our microbiome during the colonoscopy prep. i had a colonoscopy a month ago and for two weeks had all kinds of tummy issues. I wonder if that forceful diarrhea gets rid of the full flora. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

I have had several colonoscopies now. Since I have Lynch, I have them with an endoscopy every two years. I agree with MA, the procedure isn't bad but the prep is a challenge. I am always sedated with mine and prefer it that way. I have no desire to know what the heck they are doing!  My first one included a prep that was a gallon of stuff that I added some "flavor" to. It was impossible to finish. By the time I got to my last glass, I was throwing up. So, after that I refused to use that kind for the clean out.  What I use is called something like preppak but I can't remember for sure. Also, I always was required to drink a bottle of the mag. citrate to kick start the clean out.  All of this is much easier than anything we went through for our cancer. You can do this Janae! 

Love and Hugs,

Cindi

janaes
Posts: 781
Joined: May 2016

Okay thanks again for your stories and experiences. I called my insurance company today to see if the colonoscapy is covered. It could be way worse but something just bothers me. I guess i feel like im being punished because i had cancer. Let me axplain. So my doctor had told me he wants the colonascapy done because i was over 45 and also because of the thickening of the blatter. So the insurance called the doctors office to get the codes they needed and i find out he ordered the colonoscapy not as a preventative mesure but because of the thickening. Well preventative colonoscapies are covered 100% and doing them for reasons like my doctor is is only covered 95%. I realize thats not a bid difference but if i do them often that could add up.  Thats why i feel im being punished.  This might sound extravigant but i got uterine cancer because the radiation the doctors gave me for my other cancer. Boy this sounds silly but the doctors should be paying that 5 percent.

Im sorry im sounding so negative. 

Am i being too harsh? Im sure ill go ahead with this but just wanted to get it off my chest.  I guess im upset that the doctor didnt tell me to get a colonoscapy last year when i turned 45. It would have been free then.

What do you think? Is there something i can do?

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

I had to pay $125 copay instead of free for the same reason, and I had just turned 50. But you shouldn't have to do one often. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Prep is the worst part but not that bad for me as I’ve been plagued with constipation.because of my numerous abdominal surgeries and radiation Iwas unable to have a complete colonoscopy and had to have a virtual one. It’s same prep onlyyou stayawake for it. Thankfully I had a really nice tech person so it wasn’t as bad as it sounds, but I would still prefer a regular colonoscopy if possible. I have the constant fear of the cancer going to my colon and haven’t had genetic testing but am going to ask for it when I go to my oncologist last time. Yes, I’ve heard they are switching to 45 for colonoscopies now.

Northwoodsgirl
Posts: 559
Joined: Oct 2009

Yes, they are recommending preventive colonoscopy at earlier age than 50 because so many people are younger when diagnosed. As far as having to pay more for a “diagnostic” colonoscopy verhe’s a “screening” colonoscopy it is the same way with mammography. Go figure! The United States Preventive Task Force is the organization who mandates what preventive screening procedures insurance companies must pay for and the frequency of the screenings. 

The prep for colonoscopy is hard because of the sheer volume of solution one has to drink. Plus by the time you are about 1/2 to 3/4 through drinking the prep you likely will be gagging on it. I have had 4 colonoscopies and am 63 yrs old. If they find a polyp then you ar put on an every 3 year plan. Plus your siblings should be under a more frequent colonoscopy schedule as well. The prep can cause you to have lower potassium, sodium or magnesium. So some may get restless leg syndrome or calf cramps after. All in all it is doable and so very important for cancer screening. 

There are alternatives such as Cologuard stool testing but that is only for people at low risk. There also are other stool sample tests like FIT-DNA, FIT, FOBT or other stool based tests varying from having to be done yearly or every few years. But if any of these tests are positive one would need to have a colonoscopy anyway. 

Lori

 

Michaelynn
Posts: 81
Joined: Apr 2010

I couldn't drink the mix kept throwing it back up so the doctor prescribed me cologuard which is a test good for 5 years that you can do at home with no prep. I did that and it came back okay. It is a fairly new test and the doctor said the accuracy is very good and you can do it at your convience. They also have a program that will pay for the cost if your insurance doesn't cover it. As it is a preventative test most insurances will cover it. They report the results to your doctor and then you get a call. If its positive than you have to do the regular sedated test anyway. Hope this helps.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I had the FIT test last summer because I had already had a virtual colonoscopy in 2016. I'll have the FIT test every year unless it comes back positive. Then I'll have another virtual one. I refuse to have a regular one since they perforated my mother's colon.

Love,

Eldri 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

That probably why I couldn’t have a  regular colonoscopy. 

MoeKay
Posts: 220
Joined: Feb 2004

I have a friend who was diagnosed with stage 3 colorectal cancer at age 49 in 1999, the same year I was diagnosed with endometrial cancer.  We went through our treatments together.  She and I often spoke about how the recommendation for first colonoscopy at age 50 was too late, as my friend had no family history of colon (or other) cancers.  In fact, both of her parents lived well into their 90's without ever having been diagnosed with cancer.  Because of the advanced stage of her cancer at the time of diagnosis, my friend had to have extensive surgery, chemo, and radiation.  If she had had her colonoscopy at age 45 like they are now recommending, I suspect she may have gotten away with just surgery, or even just polyp removal.  She's fine now, but she went through a grueling treatment that likely could have been avoided under the new recommendations.  I'm so happy to hear that these colonoscopy age recommendations have finally been changed.  It's my understanding that people are being diagnosed with colon cancer at earlier and earlier ages in recent years. 

janaes
Posts: 781
Joined: May 2016

Thanks every one. Im not sure what my doctor ordered for the all the stuff i have to take. I was about to make the appointment for the colonoscopy and then realized i needed to figure out the insurance stuff.  Just before i decided i wanted to talk to the insurance the lady on the phone asked where i wanted all the meds sent to. 

I guss my question is what do i do if the meds they give me are to much for me and i cant handle them.? I dont know who to call. It sounds liike its stuff i take rhe night bere. Doctor wont be open to call them. I was thinking about doing the procedure on monday so sunday would be thday im taking the stuff. 

So how do you get different meds? Should i do it a different day?

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

When they say meds it generally means a so-called "bowel prep" package: some packets of junk for you to mix into water and drink, and maybe a mixing bottle. They say it's prescription but I really don't understand why. If you can't take it for any reason, there are alternative things you can do at home; I've had friends pursue that option w/their doctor's approval and it was fine. Good luck, you can do this!

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

I would ask the GI what to do as a backup if you can't finish, so that you're prepared and less stressed. It's important to do the backup he/she recommends (as opposed to what you might hear elsewhere) as they will decide whether to cancel your procedure and send you home to reschedule. When you get there, they're very particular about questioning you about your prep before they proceed. 

janaes
Posts: 781
Joined: May 2016

Yep. I got my colonoscopy set up fot the first monday in april. The appointment is in the early afternoon so the ladyvtold me i have drink the last of the stuff they give mr at 10 pm the night before. Thats late and wil be up all night im afraid. Did any one have to do that time? My perscription is ordered so i just have to go get it. Im still hoping this all works out for me

barnyardgal
Posts: 227
Joined: Oct 2017

My gynecologist oncologist surgeon had me do the bowel prep before the endometrial cancer surgery. A friend told me to mix the "drink " mix with crystal light ice tea, which my Dr okayed. I had no problem with it. When I was constipated from my first chemo treatment the nurse recommended buying the over the counter bowel prep drink. I went to the drug stores at midnight to pick it up and made the mistake of buying cherry flavor. I drank a few sips of it in the car (really dumb and it tastes wretched) and was sick the whole way home. I had to pull over to the side of the road at one point. I was a little worried our rather over zealous police force would pull up and think I was drunk since it was a Saturday night, lol. Moral of the story, if you buy over the counter prep, don't buy the cherry flavor!

My doctor just has me do the FIT test at this point. When I had the surgery, the Dr was worried because I had scarring on the outside of my colon. She asked my husband if I had ever had ecoli or something similar. I did when I was in Asia, and lost 10 lbs in 4 days. I thought it was interesting that it showed on the colon 15 years later, but fortunately that's all it was.

janaes
Posts: 781
Joined: May 2016

My colonoscopy was today. All looks clean. Dont have to do another one for 10 years. Im glad thats over with.

MAbound
Posts: 889
Joined: Jun 2016

You are no longer a colonoscopy virgin! Wink

janaes
Posts: 781
Joined: May 2016

That made me laugh. While waiting to get it done i was telling my mom that i think all my siblings should have one. 3 of them are over 45 years old. My dad is 72 i think and he said he just had one too. He thinks by 82 he wont do another one. Most of my grandparents died in their 80's. Im sue thats what he is thinking. It wont be worth it any more.

Boy does this stuff make me feel old.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

glad that's done. Hopefully in ten years there will be even simpler testing. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Good for you Janaes! Glad it went well..... I have to do them every 2 years (yuck!) due to having Lynch.  I'm sure you will agree that the procedure isn't a big deal since we sleep through it but the prep is a whole other story!!!! I love Connie's idea that maybe they will have something better before you are due again.... Maybe I can wish it here by October.... lol

Love and Hugs,

Cindi

barnyardgal
Posts: 227
Joined: Oct 2017

Thank you for this thread. I get to do one in a couple of weeks for the first time. Everything here is very helpful.

janaes
Posts: 781
Joined: May 2016

Yea like i said im glad im done. The prep was the .Hard part for sure. But i will be homest the mix i had to drink wasny as bad as i thought. I just put the lemon flavoring that came with it and really the taste wasnt that bad. I had way worse with something i drank before one of my cat scans. By the end it was hard to drink but i dont think it was the flavor but i did have to go slow on the last 16 oz or so.  Diaria was for sure a problem of course but it didnt stop me from driving down the street to get my daughter. We time that one just right.

Good luck barnyardgirl on your colonoscopy.

barnyardgal
Posts: 227
Joined: Oct 2017

Thank you!

Ribbons's picture
Ribbons
Posts: 73
Joined: Jan 2019

glad that is over with for you! Just thought I would share this, my husband just had one. His insurance did not want to pay much for the prep kit although the actual procedure was covered. His Dr told us if that happened with the insurance to let him know because they have free samples in the office. That was helpful to know. And my husband is all clear, next one in 10 years. I myself have never had one. CT scan said everything was normal though. I know at some point I will have one.

Canary's picture
Canary
Posts: 22
Joined: Aug 2018

I had my hysterectomy in July of 2018. I am due for my next colonoscopy in spring of 2021. I have been concerned and wondering about any troubles because of the colon moving around in extra space. I read LisaPizza’s comments, but was wondering if anyone else has had trouble getting their colonoscopy because of having had a hysterectomy.

BluebirdOne's picture
BluebirdOne
Posts: 205
Joined: Jul 2018

I was due for a three year spaced colonoscopy in August of 2018 due to polyps found on a prior colonoscopy, but the cancer surgery, chemo, radiation postponed it, as well as my mammogram. My team says to wait to do either tests until at least a year after surgery. With having CT scans I guess they are not concerned something will be missed.

 

Canary's picture
Canary
Posts: 22
Joined: Aug 2018

THanks for the encouragement. I had chemo from august to November 2018. My mammogram was due in early october and my oncologist had me go ahead and do that. I had a CT three weeks after the last chemo. I see the Dr.  every three months but she doesn’t plan on a CT unless she suspects a problem. I guess i am worrying too early about something happening 2 years from now. 

BluebirdOne's picture
BluebirdOne
Posts: 205
Joined: Jul 2018

My treatment is very similar to yours on a timeline. I finished chemo in late October, I had my first post treatment scan in November, visit with no scan in February, and the next CT is mid May. They are not worried at all about the colonoscopy and mammogram, so I am not going to worry either. I have enough anxiety about the May scan being 7 months after chemo ending. :-) I was 1a, but UPSC, so there is always concern. 

MAbound
Posts: 889
Joined: Jun 2016

I finished my radiation in December of 2016 and was due for my 2nd colonoscopy in 2017. The radiation oncologist said to wait at least 6 months to let things heal enough before having it. I had it in October with no problems, if that helps answer your question.

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