Time between testing?

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jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/7/2010 7:11 PM (GMT -7)   
I am new to CD and I have only had one camera swallow test. that was almost 1.5 yrs ago. I have been on meds since, notice some improvment but not much, I can leave the house with out to much fear most days now...

But how often is average for testing? (since non of the other test showed anything diffinative other then the camera swallow for me)
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 1/7/2010 10:28 PM (GMT -7)   
My GI likes to do at least one test every 6 months which is fine by me as he can't know what's going on in there if he doesn't check. 1.5 years seems like you fell through the cracks which doesn't speak well of your GI. Perhaps you should start making some noise or looking for a new GI. JMHO.

I hope you get some relief soon.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/8/2010 6:27 AM (GMT -7)   
Going to disagree some with AZ . . . there are really only three reasons for regularly repeating the invasive tests for Crohns (colonoscopy, EGD and pill cam) . . . to diagnose in the beginning, to watch for serious complications like strictures and fistulas and to screen for the sllightly increased risk of cancer after you have had the disease for many years. Otherwise most GIs will monitor your symptoms to track the course of your illness, adjusting meds as they go along. For people who are not in the cancer screen years (usually after active disease involving the colon for 15-18 years) scopes and pill cams every 5 years or so are generally adequate, unless you are showing very pronounced symptoms or signs of a major complication, like obstruction or serious bleeding. A SBFT barium swallow series can also tell a lot about the small bowel without the expense and hassle of the pill cam. Most GIs will opt for periodic, but not frequent, scopes and pill cams for disease that is othwerise fairly well controlled. Simply put, once they have looked in their and said "yep it's Crohns" there is no compelling reason to look again that often unless there is a red flag showing. 

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 1/8/2010 6:34 AM (GMT -7)   
My GI only orders tests, other than bloodwork, when I am flaring or having a lot of pain, I have a colonscopy every 5 years. Although he freuquently changes my meds. The people at the pharmacy definitely know me by name.
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/8/2010 7:26 AM (GMT -7)   
My GI is pretty much like MikeB described. I am in remission now, and he schedules regular blood tests, but anyother tests are only generally ran when I run into problems. He does like to do either a SBFT or CT Enterography every few years to make sure I haven't developed any further strictures, but other than that he goes by how I am doing, which I like.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 1/8/2010 7:55 AM (GMT -7)   
It seems i didnt press the submit button. What I wanted to post was something like the following: Arnet you really arguing about statistics here. After all its your health and you should find another doctor if your doctor says that it has been too soon since your last test to be tested again.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 1/8/2010 4:19 PM (GMT -7)   
My doc is repeating my tests after 1 year because I am not doing well. I was diagnosed with diverticular colitis a year ago but since I have a positive prometheus test for crohns (asca), fissures this summer with fever and I am generally not feeling well with lots of flares after being on colazal for a year. They are going to re-biopsy to see if crohn's is there. I think they need to know what's happening in there, are the meds working, etc..... however, as a patient, I don't want a lot of invasive tests or exposure to radiation. It would be nice if there were better tests. Some docs check your sed rate and CRP but those aren't very specific tests. It's a dilemma, this topic..... But, you do need a doctor that you trust and listens to you. Good luck to you and I hope you get some relief soon.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/8/2010 4:50 PM (GMT -7)   
Thanks to all who replied! I guess I just figgured that if the symptoms go away and the ulcers are still present that they will still cause complications later on. I would like to try to stay on top of this and since I think that there may have been a chance that some of the pain meds that I had been on in the past could have been masking symptoms then it could be possible that the same could be true of other meds (as I have been off of the pain meds since My Endometriosis has seemed to be dorment now)
I am glad to see that there is a general concenous about trusting your doc. I am still not sure that I do, as I have only seen him two times in the last year. But some of my symptoms persist and side effects have popped up when switching meds so I am not sure about him yet although he seems to be getting some of it right... :)
Thank you all!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj

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