Supposedly Good colonoscopy but still having tenderness

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camjames
Regular Member


Date Joined May 2006
Total Posts : 229
   Posted 3/26/2009 6:28 PM (GMT -7)   
Anyways, this might seem like a bit of a rant, but it seems like my GI doctor is not being very empathetic towards my actual symptoms. I sorta know where my crohn's 'spot' is, and sorta gauge how things are going by how it feels down there, along with my appetite and energy levels etc. Anyways, I have been on entocort for maybe 3 years. Not always at higher doses though. And I'll admit that I realize being on steroids causes major side effects, but maybe less so with entocort. Anyways, we did a colonoscopy and supposedly he thinks that my ileum is doing fine, even though i dont' suspect that it is. I had a partial obstruction in what felt like that area half a year ago, when i tried tapering entocort. I was only on remicade and methotrexate for a few months, and now its been over 6 months, so im sure those medications have helped some. And if I am on about 6mg entocort i really feel pretty good. Once in awhile I'll have to take 9mg for a day or two, then back to 6mg. Anyways, I have no clue why my doctor didn't see any abnormalities in my ileum, as my last colonoscopy 2 years ago, that my surgeon did, found quite a bit of inflammation and slight narrowing in my ileum. So although i know these meds are helping, I doubt all of that inflammation went away, and it feels like its still there, just less prominent. So again, im attempting a taper off entocort, but I am really thinking of switching GI doctors cause this one does not seem to be concerned with symptoms at all. He pretty much tells me to taper no matter how bad im feeling...this doesn't seem right. Anyone have similar experiences?

camjames
Regular Member


Date Joined May 2006
Total Posts : 229
   Posted 3/27/2009 8:24 AM (GMT -7)   
hopefully someone might have any sort of similar experience to this...

Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 3/27/2009 9:56 AM (GMT -7)   
I can't say that I have had a similar experience, but I think it is important to have a doctor you trust.  If you don't feel like he is giving you the right advice, you might be right in considering switching.  If you're not sure, try just getting a second opinion.  It can definitely help put your mind at ease.  Even if another doctor tells you the same thing, at least you know someone else agrees.

21 years old, Female.
Diagnosed with Ileocolitis and Perianal Crohn's November 2008.
Currently on 15 mg Prednisone, waiting to be approved for Humira.


leabug
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/27/2009 10:18 AM (GMT -7)   
I agree with Sarah B- get a second opinion. Or at the very least, talk to your doc about doing more tests. I've found that for me, it's very tough to view the ileum (or at least what's left of it) via colonoscopy due to some mechanical issue with the resection (dr says it's tough to get the scope around that area, and doesn't want to risk perforation by pushing it too much), so I often have an ultrasound as well to see if there's inflammation or anything in my small intestine. (Granted, I have to go to the hospital for the ultrasound as well, as he prefers me to see the ultrasound dr who specializes in looking at the bowel, rather than going to a clinic where they usually just deal with pregnant ladies.)
DX with Crohn's at 21 in '06
Resection of TI and Cecum/3 Strictureplasties in May '08
I've been on most entry-level meds out there: prednisone, AZA, pentasa, ciprofloxacin, metronidazole, etc etc etc... starting Remicade soon, after discovering an enteroenteric fistula.
Flock of Parrotts- my family blog.


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 3/27/2009 1:48 PM (GMT -7)   
That's true, more tests might be helpful. After my initial colonoscopy, I also had an abdominal CT scan done to check out the small intestine.
21 years old, Female.
Diagnosed with Ileocolitis and Perianal Crohn's November 2008.
Currently on 15 mg Prednisone, waiting to be approved for Humira.


camjames
Regular Member


Date Joined May 2006
Total Posts : 229
   Posted 3/27/2009 5:22 PM (GMT -7)   
Thanks for all the replies...I think I am definately switching doctors. So I guess im on my own for my entocort dosing til I see the new gastro, but I'm thinking if I am having weaker appetite, slight cramping, and more tenderness, that I should think about holding off on the taper and maybe take 6mg daily of entocort for awhile? I did have an obstruction about 6 months ago when feeling simliar to this...so it scares me lol. What do you think?...thanks guys
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