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Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 2/24/2008 4:58 PM (GMT -7)   
So I went to the cleveland clinic january 31st they ordered blood test etc. Went on the 13th for at ct. They want me to go in for a colooscopy on the 4th but I don't, followed by a appointment to folllow up with after. From all the test they have done it all shows small bowel crohns. I don't feel that the expesene of a colonsocpy with my insurance through work and my college bills etc is nessecary if it won't really show anything had one last January and no crohns. Is it out of line to call and tell the doctor I don't want to do the colonoscopy and would life to do the follow up without it? What will the doctor say? what ammo do I have to use when calling? should I do this? can I do this?
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 165lbs). On HUMIRA, Prednisone

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Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 2/24/2008 5:04 PM (GMT -7)   
You have the final say-so about any medical advice you're given. You don't have to get ANY tests done if you don't want to. That is your choice. Your doctor may recommend something, but it's up to you whether to follow his recommendations. That being said, unless you've talked to your doctor about why you don't want to get it done (i.e., you are worried about the cost), he might be miffed if he sees you just cancelled it without talking to him first.

So, my advice would be to get him on the phone, tell him you're worried about the cost, and maybe he will agree with you. If alternatively you find out that he really strongly advises you to have it done (and if so, he should explain why, at least) and you still don't want to, don't be surprised if he seems exasperated at your next appointment.
Co-moderator - IBS Forum


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 2/24/2008 5:08 PM (GMT -7)   
The whole point of the cleveland clinic visit was to get a second opinion and try some different treatments. Well here it is march almost, the appointment was scheduled in december so it's 3 months of crap felling with nothing new to try.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 165lbs). On HUMIRA, Prednisone

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Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 2/24/2008 5:16 PM (GMT -7)   
This does beg the question, however - what kind of opinion are you hoping to get if they don't have the test results that they would like in order to give you their opinion? Know what I mean? The treatments they might offer you will definitely vary widely depending on the progression of your disease. And even though you "think" you have small bowel disease, what gives you this impression? How can you be sure it's not in your colon?

When was your last scope done?
Co-moderator - IBS Forum


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 2/24/2008 6:08 PM (GMT -7)   
I kind of just went through this myself. Let me preface this by saying that I am a tough case who has been diagnosed and undiagnosed several times and I am currently seeing a GI and a surgeon in my hometown that cannot agree on a diagnosis.
 I had a colonoscopy 2 years ago by my GI upstate but I just saw a GI at Mt. Sinai and in spite of the fact that he saw the results from my most recent colonoscopy, he wanted me to have another at Mt. Sinai. He basically said that he was confident in his abilities and he knows what he is looking for. I decided to just do it because I wanted him to be the one looking for evidence of crohn's. I am spending a lot of extra money traveling to NYC (and time off from work) to be helped by him so I was comfortable with that decision. I have also been to 4 other GIs here that cannot seem to stop these abscesses. If I am supposedly seeing the best, I want him to start from scratch in case thinsgs were missed by other Drs. I'm not saying it is right for you but I wanted to give you my perspective and wish you luck with whatever you decide to do. :-)
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 2/24/2008 6:15 PM (GMT -7)   
in all honesty, as much as those scopes are awful and all, in essence they are the BEST test doctors have to diagnose us and see what all is exactly going on in us since its thier direct line to looking at the crohns, the intestines and what all is going on, or causing pain or anything wrong in you....xrays, poking, everything else only goes so far, but if you really want those second opinions and knowledge on whats going on with you, the scope is a huge recommendation...I'm someone who will avoid the scopes at all costs too, but I also know that they are the docs best lines for helping us in cases since it is the best look they can have into us to help and diagnose. If your worried about cost, talk to your doctor, I am sure they are very used to it and would/could have many suggestions and all for a way to work things out.
26 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 2/24/2008 6:33 PM (GMT -7)   
All the ct's and follow throughs show the small bowel. It's been a year since my last colonoscopy
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 165lbs). On HUMIRA, Prednisone

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chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/24/2008 7:54 PM (GMT -7)   
That is good thinking ginger!

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/26/2008 1:03 PM (GMT -7)   
FinalMacGyver said...
All the ct's and follow throughs show the small bowel. It's been a year since my last colonoscopy

any thought given to the pill cam?  I read a story...maybe a post...about a woman who had bleeding on and off for years...but it was frequently on.  The doctors all told her it was her crohns...no doubt she had it....they got that part right. 
 
then when the pill cam came out she tested with that and they found a very minute lesion and tear in her small bowel.  Outcome that was reported was very good and seemed to be long lasting.
 
I can't find the article or quote....so maybe it is my imagination....but it sounds like it is worth a try.
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 2/26/2008 1:51 PM (GMT -7)   
I don't think it's out of line to say "no" if you don't feel a particular test is necessary.  But isn't an annual colonoscopy standard for IBD?  If the last one was January a year ago, it's time for another one anyway.
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