2nd colonoscopy

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jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 5/20/2010 1:40 PM (GMT -7)   
I was diagnosed in February of 09. In a discussion with my GI, she said I would not need a second colonoscopy for at least 8-10 after my initial diagnosis. I expressed to her that I would really not prefer to wait that long and that I would liked to have a repeat one in 3 -4 years. She said no and that insurance would never pay for it. I will pay for it myself before I decide to just skip it. My cousin was diagnosed with UC at 24. At 27 they thought he was having a flare. When they finally agreed to scope him they found agressive colon cancer and he passed away before he turned 30. I also have an aunt that died of terminal colon cancer. My doctor claims that this was probably missed or that they didnt have the same technology 6 years ago they have now. I am 26 and fear if I should develop cancer, it would be fast growing and I dont want to take that chance.
 
Has anyone's dr agreed to repeat a colonoscopy before the standard 8-10 years after diagnosis?
JAS
 
Currently taking: Remicade


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/20/2010 2:28 PM (GMT -7)   
8-10 YEARS?!  Oh my gosh - that SHOCKS me.  My GI does a colonoscopy on me every 3 years, unless something comes up and I need one sooner. 
 
I had my 1st one in 2004 which diagnosed me with Crohn's.  I had multiple ulcerations throughout the colon. 
 
In 2007 I had my 2nd colonoscopy.  Not much had changed in 3 years - nothing was better but nothing was worse, either. 
 
Now in 2010, I just this week had my 3rd colonoscopy.  Although I feel fine, the results showed an overall progression of the disease since the 2007 colonoscopy and my GI now wants me to change medication as it would seem the Colazal is no longer working.
 
My particular insurance pays for my colonoscopies because I have Crohn's Disease.  I find it strange that a GI would just blanketedly said "insurance would never pay for it".  Not true - not in my case anyway.
 
I might also add I've never heard that 8-10 years is "STANDARD" after a Crohn's diagnosis.  That just seems like a REALLY long time to wait because of the nature of this disease.  It's always there, working its awful magic, whether you can feel it or not.
 
I think you're totally right in wanting a colonoscopy every 3-4 years.
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
38/F/SC
Current Rx's: Colazal (generic), Omeprazole (PRN), Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills; Slow Fe (PRN) 
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 5/20/2010 3:38 PM (GMT -7)   
More than 1 GI has told me I can wait 8-10 after diagnosis to get another colonoscopy and then I will need it every 2-3 years after that. I find this extremely worrisome that it's not true. Also, They have never been unable to determine if I have UC or CD. I hate a feeling I more than likely have severe UC, which according to my Mayo doctor has a higher incidence of colon cancer.
JAS
 
Currently taking: Remicade


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 5/20/2010 3:51 PM (GMT -7)   
When I was first diagnosed in 2005 I was almost 41 years old. I had a colonoscopy at that time, and my GI said that I would not officially have my next one until 50. That was because my Grandmother had colon cancer and as a follow up for the Crohn's. However, that does not mean that if I needed one to check on a flare etc. that I wouldn't have one in between. In fact I have had 2 since then, and several sigmoidoscopies. I think that insurance will not pay for a colonoscopy if there is nothing new to learn. SO if you are in remission, or have no flare ups then they expect you to wait for the 8 to 10 years. Procedures that do not give you new information are generally avoided by the GI's that I have heard about. I finally talked my GI into a CT Scan because I was having a lot of activity which I felt the scopes were not giving me information about. I think that you should not worry about whether or not you will get a colonoscopy, but worry about taking care of yourself. If you end up needing one I'm sure your doctor will give you one. On the other hand if you feel that your GI is not responding to your concerns, you should think about finding someone that you feel more comfortable with.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Nexium, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 5/20/2010 4:51 PM (GMT -7)   
I have a colonoscopy every year because I have an agressive form of Crohn's. Every GI I have been to makes me get one every year. While I hate the prep, I feel safer having them often enough to show the condition of my intestines. Previously my Crohn's, within a 4 month time span, flared and worsened to the point where I perforated. The Cleveland Clinic said they'd never seen anything like it before and told me I had a very agressive form of Crohn's that can turn on a dime.

If I were you, I'd find a new GI. You need one that you feel comfortable with.

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 5/20/2010 6:36 PM (GMT -7)   
My GI told me I would not have another colonoscopy for 8-10 years also. I have been on many sites that also have that recommendation. Now, having said that every case is probably different. I have mild crohns and there was not a lot of damage in my colon, just the active inflammation. He did say that if symptoms warranted it we would perform another but if I am responding well to med and my cbc looks good he would not do one. But, if you have a more aggressive form of crohns and feel you need it every few years I would have a serious discussion with the dr. As for insurance I know every one is different, but I work for an insurance company. As long as the dx is not routine you can have them more often. And a dx of crohns is most definitely not routine so check with your insurance on that.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 5/20/2010 6:57 PM (GMT -7)   
Thank you guys for all the help. My insurance coverage has always been good - the only thing crohns related it has not covered in full is my Prometheus test results. Honestly, I'm not as worried if insurance covers it as I am that my doctor is using this an excuse for not getting a colonoscopy.
JAS
 
Currently taking: Remicade


*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 5/21/2010 1:19 PM (GMT -7)   
I was diagnosed 6 years ago, and have had 4 colonoscopies to date. I didn't have any problems with the insurance covering them either, and if I did, I would have raised he** :)
Diagnosed at 17, currently 23 :)  Have had 1 resection so far.  It's been an adventure!
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