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still in pain but scope shows I'm better?

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Ulcerative Colitis
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Posted 10/8/2010 1:53 PM (GMT 0)
I've been having a lot of pain on my left side and bleeding and mucus for months but when my GI does a scope he says things look pretty good in there....why am I in so much pain then?? They even did a CT scan and everything looked good there too...is it just in my head?
Posted 10/8/2010 5:49 PM (GMT 0)
What does "looks pretty good" exactly mean?

q
Posted 10/8/2010 6:20 PM (GMT 0)
Some redness but not much inflamation seen
Posted 10/8/2010 6:45 PM (GMT 0)
When my kid's blood tests are perfect and show no inflammatory markers, he can still have cramps.... so I guess even mild inflammation can cause cramping. Sorry....
Personally, I'd do some canasa, if not Rowasa.....
Posted 10/8/2010 6:57 PM (GMT 0)
So you're tapering from pred and now at 15mg?

You should, however, still have asked the doc for some rectal meds...

Where exactly is the pain and when exactly are you having it?

Redness is still inflammation, beit mild or whatever. You can still have symptoms from that.

How much area was red?

When was the last scope regarding the GI's comment?

q
Posted 10/9/2010 3:05 PM (GMT 0)
Lat visit I had was same story. Yet going over 10 times a day. Bleeding at times. EXTREME pain. I am off this week to Mt. Sinai Med cntr to see a new Dr.
Posted 10/9/2010 3:12 PM (GMT 0)
What did your biopsies show? Mine were "negative", yet I still have pain and abnormal stool. I am not sure what "normal" even means any more.
Posted 10/9/2010 5:06 PM (GMT 0)
Same here with the last 3 scopes. Always patches of inflammation/rash but no bleeding or ulcers apparent, yet symptoms of bleeding and cramping, lower L pain, etc. Dr says likely IBS in addition to UC.

Gets worse, then improves, then worse, etc... all biopsies at last c-scope were positive for inflammation but not colitis of any sort.

Then had sigmoid colon removed and biopsies of that showed chronically active colitis. Go figure. (Sigmoid colon removed as dr suspected endometriosis in that area causing bleeding/pain). I guess that says that many times biopsies are not accurate. After biopsies, bleeding heavily for 10 days or more.
Posted 10/9/2010 5:14 PM (GMT 0)
I think doctors want to diagnose us based on what they can SEE in a scope.
But as patients with this disease we care more about our symptoms because our lives are severely impacted by them.
There is a real disconnect I feel in UC management because of this.

Part of this is due to the fact that there are no clear answers, no real cure that works for everyone.
If you have symptoms that are affecting your life you need a doctor who will work with you getting those symptoms under control. If he/she doesn't treat the WHOLE patient they aren't good doctors.

No, it's not in your head, it's in your gut. For you to ask that question means you aren't being listened to and helped.
Have you considered finding a doctor who can help with your symptoms since your current doctor thinks you're "pretty good" when you're not?
Posted 10/9/2010 5:58 PM (GMT 0)
Some of the pain could be the prednisone. One of the side effects is abdominal pain. I know some of my pain has cleared up since I got off pred.
Posted 10/10/2010 12:47 AM (GMT 0)
You might also have some IBS
Posted 10/12/2010 12:00 PM (GMT 0)
Thanks everyone. As for getting a Dr who listend there is only one GI here at the moment so....not much choice.
Posted 10/12/2010 2:44 PM (GMT 0)
Sometimes I think the docs get numb to seeing disease, they see really bad cases so think the milder cases are no big deal.
But it doesn't mean a mild case doesn't cause a lot of problems.
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