Anyone choose not to do as many colonoscopies as recommended?

Hello,

I used to frequent this board about 7 years ago, when I first got diagnosed with UC. I tried drugs, but they never helped me and made my symptoms worse. I went to a Herbalogist after my diagnosis and tried some of his suggestions. I was able to get my disease into remission just using diet (mostly just trying to eat whole, organic foods- but not in a very restrictive way) and sometimes Bee Propolis shortly after meeting with him. Things are still going well, and I feel mostly normal other than a couple small "blips" a year- not flares, but just some uncomfortableness, but never diarrhea or blood.

Anyway, I recently remembered that my GI had suggested that I get another colonoscopy 7 years after my initial one for my diagnosis. I have scheduled one, but then came across this blog posting:
http://empoweredsustenance.com/skip-the-colonoscopy/

She links to this article in the post:
http://www.gutsense.org/crc/crc_transcript.html

I am a bit worried that if I get the scope done, it will "mess up" the remission that I've been having for over 6 years now.

What thoughts do you guys have on this subject? Everyone here is so knowledgeable, so I figured that you guys would have some good advice for me!

Thank you!

I think it's worse if you have something growing in there. I would do your scopes as recommended by your doctor. I lost my cousin to colon cancer and it could have been totally avoided. Just my two cents.

I agree with Marianne. I would rather do the procedure than learning I have colon cancer when it's too late.

My GI told me I had to have one every two years for the first 10 years, which I did, and then every year after that, which I have not. I consulted another GI, to whom I am switching too, and he feels that every year is overkill in my case because the last 4 years or so my UC has been limited to my rectum, UP, whereas it used to go all the way up.

My GI said that in people with IBD, colon cancer develops more rapidly, and the longer you have the illness, your chances of getting colon cancer increase. That being said, having had IBD for 17 years, I am NOT going to have as many colonoscopies as recommended. THe next time my GI suggests one, I think I will ask for flex sig only as past scopes have shown most involvement in rectum/left side. After last scope had really hard time controlling a flare.....

I understand your concern, but I would not skip your scopes. It's important to get screened since we IBDers are at much higher risks for getting colon cancer than the general population. Just my two cents.

if I got them done as much as they recommended , my butt would be sore for a whole other reason!! geez theyre crazy with that!...

I had a ten year total remission (just a couple IBSish days a month here and there but that was it) off all meds (because the only med that didnt make my UC worse was pred) after my initial attack years- induced by liberal pred use- that led me to falsely believe that I had been misdiagnosed during my i intially attack years, so I stopped seeing GI's, stopped scopes, and just lived my life. I eventually relapsed and since then never regained sustained total remission for another 15ish years (chucked my colon 6 weeks ago, happily, due to refractive/pred dependence and generally fed upped ess) but I will never know if it was avoiding scopes that helped maintain that "super-remission" as I now call it. Due to the risks of long term non-surveillance I started to do full scopes every 2 years and then later annually after I returned to the long term non-remission world, even though scopes seems to flare me so somewhat around half the time (flaring for me seemed mostly correlated with the number of biopsies taken, and towards the end I wanted tons of biopsies because low grade dysplasia got found once.. But it was never seen again so was likely misdiagnosed).

Generally the dysplasia/cancer threat is very low for the first decade and then goes up a few percent per year, from my understanding, so I think just saying no to scopes is not wreckless for the first decade. After 20+ years it can become wreckless though, at least for pancolitis or left sided- for UP I thi k the cancer threat is negligable (so OM is safe, in theory).

Post Edited (Probiotic) : 6/15/2013 8:59:43 AM (GMT-6)

Yes, cancer survivor here and after one doctor told me to get one annually, another doctor reprimanded me for doing so, he dropped me down to one every 3 years. I verified that info (3 year plan) with several of my other doctors (GYN, Internist, Colorectal surgeon) and they all sighed, saying - sure, you can drop down to one every 3 years. But I could tell my colorectal surgeon wanted me to get one every year. In a perfect world.

Ah, but now we have lousy insurance, only one of my scopes was covered, back in 1997. Now I am responsible for paying for them, so I've put having another one done off for quite a while. Something I promised myself I'd never do. But these procedures are expensive! Doesn't matter if in theory they should be paid for by insurance, they are not (in my case, I fall under a different billing code since I had colorectal cancer).

It's maddening.

Only bright spot is if I pay in cash the day of my procedure, I will owe 50% less than if it got billed to my insurance, reduced, applied to my deductible and billed ultimately to me.

I love how "common people" have better medical advice than doctors.

I have had UC for 4 years...had one scope at the beginning which diagnosed me with left-side only. Had one flex-sig a few months after treament (in doc's office) which showed improvement.

Had my second one on Friday after flaring for 6 weeks and being diagnosed with C Diff and treated. Now it is pancolitis.

I don't know how quickly UC advances up the colon, but I wonder if it would have been all the way around if not for this lengthy, severe flare.

Seems like timing was against me...I waited until the third week to make the desparate call for help...had to wait a week for C diff results, then another week for doc visit and another two weeks for c-scope.


My doctor is not "pushy" about c-scopes.

I think he lets my symptoms drive the scheduling. No fam hx of colon cancer.

I will say that if you're going to have one, the senna/mag citrate prep is 1000000x better than the NuLytely. Ask your doctor to let you try it.

During my 1st yr following dx with UC, my doctor scoped too often because the flex-sig tool was always handy. I realized by the 3rd "look" that it was setting me back, as bleeding would resume the next day. So I complained about it in strong terms, and the doctor backed off. They need to recognize the reality that friction produced when the scope passes over fragile mucosa can prolong flares. It's a balancing act early on. Later one has to take risk of malignancy into consideration, which makes many doctors and patients anxious. Whenever possible after that 1st miserable yr, I have opted to get back in remission before scheduling another scope-- however long it has taken. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

I research, study and question everything that my son's doctor tells us. I don't trust anyone 100% with the health of my child, but he DOES get his colonoscopies on a regular basis. To my knowledge, there is no other way to diagnose Colon Cancer. I know of a 19 year old young man who was diagnosed with Crohn's at an early age, but NEVER had another colonoscopy until he was 18 or 19, at which point the cancer had already spread to his liver. He passed away a few months ago....just something to think about.