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Ulcerative Colitis
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Posted 7/10/2009 4:03 AM (GMT 0)
I feel like there is more I can be doing, but I don't know what. I'm super conscious of my diet, exercise and do yoga daily. Try to keep up energy, but I feel really tired.

I don't think my flares are bad, compared to what I read about. I go to the bathroom twice a day... but often have additional like, passings (don't know how to describe exactly) of blood and tissue throughout the day, with a lot of discomfort, bloating and frustration.

So here are the questions I have:

Because I'm flaring, does this mean that the Lialda is not working anymore?
Do I need to get another colonoscopy/ go to the doctor?
Does anyone know a great doc in the Chicago area?
Does having another flare mean the UC is necessarily getting 'worse' or will it always be mild? When do people start having to take Pred? I'm scared of the side-effects.
Posted 7/10/2009 5:36 AM (GMT 0)
you should be on both Lialda and a more effective rectal med such as Rowasa.
It doesn't mean Lialda isn't working...necessarily, it could mean you're not on the right combo.

I personally think your oral dosage is too high and the rectal dosage obviously too "low" considering it's zilch.

I've never taken pred, and even at 20x bloody diarrhea daily the doc never considered it either.

Try not to get desperate with pred...get serious about a proper treatment of oral and rectal 5ASA meds.


Hang tough...it takes a while to get the meds straight....although I'm questioning your doc's logic as to why you weren't upgraded to the retention enemas plus the Lialda. The oral/rectal treatment option's been around for over 20 years. Nothing new.

Ask your doctor for both and don't even consider pred or other for a long time yet (better never, however)

quincy
Posted 7/10/2009 12:47 PM (GMT 0)
Thank you for the information. I appreciate the reassurance about not having to go to the more extreme meds. I think it's just nice to have understanding and validation... I've heard that having more outbreaks builds up scar tissue- which is dangerous down the road, is this true?
Posted 7/10/2009 2:42 PM (GMT 0)
constant inflammation isn't good if it's not treated, but if there is chronic flaring and healing, the cells will have a particular pattern.

I think some have scarring, especially if the submucosal layer is affected by deeper ulcerations. I haven't done research on that, however.

When are you seeing your doc next?

Where was the extent of your original diagnosis and where has it extended to now?

quincy
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