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How often do you guys flare?

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Ulcerative Colitis
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Posted 10/5/2016 11:20 PM (GMT 0)
Flaring after being in remission for 2 years. Is it normal to flare this often ? . Having 2 BM a day with some blood streaks, is that enough to make you anemic? Hemoglobin was fine right when the flare started but haven't checked it since then. Been flaring for about 3 weeks now.
Posted 10/6/2016 12:04 AM (GMT 0)
first and forevermost - there is nothing even related to "normal" when it comes to UC !

a flare every 2 years is not unheard of certainly - some folks flare every 2 months - and some don't flare for years - lots of variables play into frequency -

i would not think anemia would normally appear at those described symptoms - but again, see above -

what is your med situation ?
Posted 10/6/2016 12:10 AM (GMT 0)
Currently not taking medication as my health insurance just recently did not cover "Pentasa" for some reason. Tried buying it out of pocket but it was just way too expensive out here in California (US).
Thinking about giving my dr a call and telling him to prescribe me some prednisone for the time being
Posted 10/6/2016 12:19 AM (GMT 0)
Remission can last a month, a year, multiple years, or 8-10 years, very individual. "On average, individuals with ulcerative colitis have a 50% chance of having their next flare within 2 years (Rowe)."

Certainly, stopping your medications increases your odds of flares. I'd contact your gastroenterologist and ask for a prescription for generic, similar medications like basaliside disodium (generic colazal) or sulfasalazine as they're much, much cheaper than pentasa.
Posted 10/6/2016 12:21 AM (GMT 0)
will they not cover any of the other mesalmine drugs ? i can only assume that's why you are flaring - the pred may buy you some time, but you really need to get back on a maintenance med -
Posted 10/6/2016 2:04 AM (GMT 0)
Unfortunately none of the mesalmine drugs are covered -_-. I've tried reaching out for help but seems like once they deny it there's no negotiating.
Posted 10/6/2016 2:05 AM (GMT 0)
I am not sure that it is worth getting on prednisone if for now all you have are 2 BM a day with some blood streaks. As iPoop says there are ways to get cheaper meds, even if you have to order them thru Canada.
Posted 10/6/2016 10:40 AM (GMT 0)
I seem to have a lot of trouble getting in to a solid remission but I'm under treated because I can't tolerate imuran or steroids. I seem to flare about every 6-8 months, but am also symptomatic during the other times. However, it tends to right itself (mostly) after a few weeks
Posted 10/7/2016 8:56 PM (GMT 0)
On the Delzicol website, you can get a coupon for 12 months for $30/mo. My pharmicist filled it out for me.

http://www.delzicol.com/resources/savings-card/
Posted 10/7/2016 9:59 PM (GMT 0)
" Having 2 BM a day with some blood streaks, is that enough to make you anemic?"

2 per day?????????? Um are you serious?
I have 20-30 per day and night 100% water with blood every day 365 for 8+ years.
Unbelievable. I can't believe people even use the stupid word "flare" it is so
utterly stupid and meaningless. There is nothing that is not flaring to me
ever. The word should not even be used.
Posted 10/8/2016 1:51 PM (GMT 0)
New Member, I feel your pain. Been up 45 mins and have went 9 times
Posted 10/9/2016 1:13 AM (GMT 0)
Tortured, please show respect. Not everyone presents as a severe case and just need reassurance.
Posted 10/9/2016 1:25 AM (GMT 0)
Rick, there are people that can get their UC under control very quickly and they don't have much issue with it. On most forums, you will normally see people who have a hard time controlling their UC so you can't base your expectations on us. For instance, I've had UC for 24 years. Of those 24 years I've only hit a true clinical remission for 5 years and that is just recently.

Over the years I've had major flares to "simmering". There is really no normal with UC. Whether we control our symptoms thru diet or medications, our UC will always be there unless we opt for surgery.

But as for the blood, unless you are going multiple times a day with nothing but blood, most times becoming anemic is rare. A few streaks here or there is no cause for alarm on the anemic side.
Posted 10/10/2016 10:42 AM (GMT 0)
I agree with Red_34, I don't think the odd streaks of blood are any cause for concern. To highlight, I have had UC for 20 years and flared with blood for months at a time, coupled with being female and monthly menstruation and on an anticoagulant, and only needed my first iron infusion a few months ago. And I'm also comforted by the knowledge that's an option that then fixes me up and I'm good to go for another five or so years.
Posted 10/10/2016 3:53 PM (GMT 0)
It's totally individual. Some people flare for years on end with no break and other people go many, many years without any symptoms at all. For some people UC is barely a thought. If you find a treatment that keeps you in remission, there is no reason to think you're going to bounce in and out of remission all of the time. For me, nothing worked well. I always felt like a flare up was on the way, mostly based on a rise in symptoms. It is a small % of UCers who have nonresponsive cases that require the highest class of medication. There are loads out there on the lowest level, who live their entire lives taking a few pills a day (or restricting their diet), and never progressing. It's hard to imagine that here because it's a forum and the people who aren't having luck seem to come here and stick around. The members who are doing well disappear.
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