trying to find people that live near me......local support would be great

Hi there everyone

Hi, there! I'm wondering if you're anywhere near Meadville. (?) Just curious 'cause I have good friends there, not with UC, though, thank God. I read in another thread that you flared after getting off meds once so intend to stay on them "longer" this time. The truth is that we UCers need to be on maintenance meds to avoid the flares. Period. I write this to you after long experience! But, hey, I'm a native Pennsylvanian (Pittsburgh vicinity), though living in NY for many yrs now, so please take this as friendly advice. / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

Hi oldhat

Yes Meadville is only about 1/2 hr away.  I live in Erie.  I know the burgh real well too!  My best friends moved there once they got married.  I actually have been on asacol for a year now but went off of the canasa suppositories because I felt better or so i thought.  That is the med I am back on.  I have come to resign to the fact I will always be on meds.  I just keep hoping these are enough. 

The guts and glory walk sponsored by the CCFA is this weekend at Presque Isle state park.  I want to go and meet fellow UCers but am afraid I might not be up to it. 

Wow you have had UC for 30 yrs?  Did you notice your first year or so was the worst?  I keep thinking once I get past the first year I will go into remission.  ANother question, not to sound stupid but how will I know i am in remission, will all symptoms subside or will I just feel a little better.  Maybe I am looking for something more than I should be.

Thanks for your help, I really appreciate it.  Oh by the way, my boss is being a total jerk today since I didnt go in.  I cant help it, I am exhausted and cant stay out of the BR.  What to do!

AMY

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Amy

Hi Amy - I am in Cleveland, Ohio. Not very far from Erie.

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Current Medications:

HI expecting226

wow you are not far at all from Erie.  My aunt lives in Parma not far from cleveland.  Its awesome to hear you are pregnant.  I hope everything goes well for you.  If you would like to chat sometime let me know.  I would like that.  How long have you had UC? 

take care

amy

Hey Expecting226- You live in Cleveland? Are you by chance being followed by docs at the Clinic. I am originally from Ohio, columbus...but currently live in AZ. I received a second opinon from a doc at the Cleveland Clinic. Just curious if go there regularly and if you have suggestions on what doc to see. I may be needing to go for a follow-up soon b/c i am not responding to any medications.

uclife - Chatting sometime sounds good. Just grab my email address from my profile and send me an email. I was formally diagnosed with UC in 2004 but have had symptoms since 2001. It just took me a while to find a good GI!

natty34 - Yes, I go to the Cleveland Clinic. I am so fortunate to have such a great hospital system in my backyard that I refuse to go anywhere else! I see Dr. Bo Shen. I would recommend him to anyone... he is absolutely fantastic. I have been seeing him since 2004, and I will never leave him (unless he moves back to China!). He hasn't steered me wrong yet. And, I might add that I can be a difficult patient. I don't accept what he says at face value - I am always researching and challenging his opinions, etc. He takes it all in stride. :)

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Current Medications:

UClife-- yes, I got sick in the 1970s, young adult life. At that time doctors expected to see UC hitting people btw ages 18-35 so I fell within those parameters. Nowadays one can read about 8 yr-olds getting it, also 60 yr-olds. What to think ... ? The unknowns surrounding IBD can be very frustrating, to say the least! Yes, my 1st yr post-diagnosis was the worst. I was seeing a general practice gastro who had good intentions, but not much experience dealing with UC meds, as it turned out. Eventually, I changed to a gastro who subspecializes in IBD; that really enabled me to progress to real remission. In remission a UCer should be free of bleeding, D, & urgency. Once those things subside, you begin to feel more like your former self, like you can go out to a new place w/o having to worry if there's an accessible john nearby, etc. The trick is to MAINTAIN remission with the lowest possible amount of UC med. I myself have done better with Colazal than with any of the earlier 5-ASA drugs-- so I'm trying not to "max out" on it. Hope you'll feel up to the Presque Isle event, but definitely don't push yourself to do more than you feel comfortable with. / Old Hat