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Super-long flare? What does this mean?

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Ulcerative Colitis
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Posted Today 2:19 AM (GMT 0)
I'm so sorry that I'm asking so many questions. I feel like this is the only place I can ask my questions and get enough to go on... rolleyes

I have had daily blood and mucus since I was 11, and no one really seemed to impress upon me that this was considered a flare. 17 years. I feel so, so, so ignored and put-aside. None of the 3 GI's I saw seemed concerned at all.  mad Now I'm doing all this research after starting to have pain from UC for the first time in my life, and I'm finding out so much more than I wanted to know. I'm just terrified now that I'm REALLY learning about colitis.

How dangerous is it to have been flaring for this long? What should my main priority be right now? What sort of oddds does this place me at for cancer down the line? Am I just obsessing too much?  

Posted Today 2:32 AM (GMT 0)
It's not good news. Definitely get a colonoscopy ASAP and especially ask for them to look for cancer signs.

But I wouldn't think that just blood is that terrible in terms of cancer. If it was a serious flare you would be going to the bathroom 15-20 times a day and soiling yourself on an almost daily basis.
Posted Today 2:34 AM (GMT 0)
It's probably not a good thing that you've had blood and mucus so long. That really sucks that your GI's never bothered to try to get you in a complete remission. That said, it's best to not worry about it too much, because what's done is done and you can't change it.

However, there are things you can do now to help. When was your last colonoscopy? Since you've had UC for 17 years, you should be getting them every other year, and maybe even every year, since it seems you had active inflammation for so long.

What meds are you on right now? If you are still having blood and mucus daily, it's time for a change, IMO.
Posted Today 2:40 AM (GMT 0)
I've had three in my life, the last one being 2 weeks ago. He put me on 4/d Lialda and my scope put me into a massive flare, so I'm on pred now, 40mg for now. I'm also doing 900b VSL#3 until things start to look up and I can step down a little bit. I was always just told, "If thngs stay status quo and you're not in pain, come back in 5 years for another scope."
My most recent scope was "colitis is there" and that was about it. He didn't seem too alarmed, even after hearing the history.
Posted Today 2:42 AM (GMT 0)
I think you should ask your doc about mesalamine enemas. They treat the most distal parts of the colon and rectum, which oral meds can't reach.

What meds were you on before?
Posted Today 2:47 AM (GMT 0)
I was on Asacol, but didn't take it for more than a month, and my GI never followed up. He just told me that he wasn't concerned if I wasn't having any issues with day-to-day life.
Posted Today 2:47 AM (GMT 0)
Oy. I hope you are seeing a different GI now.

I have to ask, are you going to talk to your doc about enemas?
Posted Today 2:49 AM (GMT 0)
I'm seeing the PA on Friday and I'm DEFINITELY going to talk to her about it. At this point I really, really, really have to make complete remission my only goal.
Posted Today 2:51 AM (GMT 0)
Good. :)
Posted Today 10:33 AM (GMT 0)
HOw about you change your doctor?
A new vision is never bad.
I feel you dont feel at ease with this doctor and at the end of the day you are suffering from it.
Your doctor might be very good and professional but if it doesnt work it doesnt work.
Had one of the best recommended doctor in Montreal, he was so nice and clever... but wanted to always be gentle with meds with me and i think for like 5 years got undermedicated.
Im on rectal meds now they are some improvements but have been having mucus and inconforts for like 6 years now without remission so cant expect the meds to do miracles in 2 weeks!

Hang in there and really i would ask for a copy of your file and that scope and have a second advice.

stefanie
Posted Today 12:15 PM (GMT 0)
I switched to another doctor in the same practice, have gone through 3 now. Each one treats things differently so find the one you like.
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