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What could these scope results mean?

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Ulcerative Colitis
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Posted 10/25/2013 4:01 AM (GMT 0)
First diagnosed with inflammation in the sigmoid 3 years ago. Now after scope today I was told it's in the traverse colon, but the sigmoid looks OK.

Can it be that Rowasa is hold the lower part at bay and I would be approaching pancolitis without it? Looks like Lialda isn't working on the traverse that well, right?

What next? I'm thinking of asking about uceris. Still trying to avoid oral pred as long as possible.

I was still medicated after the scope but I am quite sure the doctor said to see him in 2 weeks. But his office is so protective of him that they told me "He doesn't want to see patients after the scope; he will just call you with biopsy results and discuss medication."

I know I will talk to him eventually but I am impatient and you guys always, always have the best answers!

Posted 10/25/2013 4:06 AM (GMT 0)
Oh, and one more thing: the really bad symptoms and obvious blood are gone post Rowasa. But still have urgency and frequency. Could it be that a scattering of "coffee grounds" could be blood from the traverse area?
Posted 10/25/2013 5:31 AM (GMT 0)
It doesn't sound as though you have UC considering how you are healing. You're also not on enough oral lialda.

Are you using probiotics?
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Posted 10/26/2013 12:25 AM (GMT 0)
Ya, I have tried telling the docs it must be something else and don't want to join the UC club (no offense). But the positive response to mesalamines puts me in the IBD catagory according to the MD's.

When in a major flare I just want to get better, UC or not. I never did have more than 6 to 8 months of normal life on lower doses of Apriso or Lialda. Until Rowasa, didn't travel and missed my favorite summer festival 2 years in a row.

When upping the Lialda or Apriso dose to try to get out of a flare I get terrible chest pain and shortness of breath. I am sad that 2 GI's told me "I have never heard of that, it's something else." I found out by accident that there is a very rare connection between mesalamines and conditions like pericarditis.
Google it. There are some reputable reports.

So I don't have the option of more Lialda. Wish I didn't have to take any at all, but I tried that with disastrous results.The Rowasa which probably healed the sigmoid only reaches so far. If the transverse inflammation gets worse then I am looking for other options.

I don't take probiotics. Anything widely available, like at Costoc?
Posted 10/26/2013 3:19 AM (GMT 0)
There are other meds you can take besides increasing your Lialda. I am not a probiotics expert so I won't even go there. Have you considered something more systemic to go along with the Rowasa since oral mesalamines seem to be of limited value? Or maybe a different mesalamine like Pentasa would give you more coverage, although Pentasa is active throughout the bowel and you might be less tolerant of it.

I think the symptoms you're having are consistent with the findings of the scope.
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