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Ulcerative Colitis
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Posted 9/14/2010 11:50 PM (GMT 0)
Hi
I'm new to UC and have been trying to read as much as I can. This forum helps a lot. But I think doing a poll here would give me real life answers to some of my questions instead of generic statements or stats.


1. What is the average number of flares each of you experience per year?
2. How long do flares last on average?
3. Have you noticed your disease worsen over time, stay the same, or improve?
Posted 9/15/2010 5:12 AM (GMT 0)
1. 1 every 2 years, on average
2. Major flares last as long as it takes prednisone to get me back into remission (2-3 weeks), minor flares can come and go over time and can usually be treated with rectal meds.
3. The disease for me seems to be becoming less severe (probably because I am better at nipping major flares in the bud and I am taking a good mix of maintenance meds and supplements) but at the same time, drugs sometimes seem less effective.
Posted 9/15/2010 5:38 AM (GMT 0)

bosco123 said...
1. What is the average number of flares each of you experience per year?
2. How long do flares last on average?
3. Have you noticed your disease worsen over time, stay the same, or improve?

Improve. It used to be I got flares less often, but they were serious flares and lasted three to six months. Now I get mini flares every few months due to taking antibiotics, not watching my diet, not taking my supplements... The flares last a day or two, no more than a week. I improve my diet, take my supplements, ... , and the mini flares go away.

Post Edited (subdued) : 9/14/2010 11:43:00 PM (GMT-6)

Posted 9/15/2010 11:08 AM (GMT 0)
1. I am always in some state of upheaval. I am not nor will I ever be as I was pre-Uc but if I had to categorized my symptoms into corresponding flares I would say about 3 times a year on average.

2. Because these flares usually last months, even though technically they are years.

3. Mine has gotten worse over time. I was originally diagnosed with Ulcerative Proctitis, then it progressed to sigmoiditis and it has slowed or stopped at Left sided which is where I am at today.
Posted 9/15/2010 12:39 PM (GMT 0)
Well, Ive only had UC for about five years so I wouldnt really call myself a veteren. Im still learning the ropes. I think I had been in one constant state of inflammation but very low degrees over the last five years. I would have some minor upsets, a little bit of D for a few weeks, then Id be fine. Then Id have a bout where I was bleeding a lot. But I was up and down for five years or more. Then I started flaring a bit worse then usual about a year ago, and this got progressively worse, but that, I believe, was because I didnt realise I should have been on maintenance meds. I found myself in a nasty flare around easter-time this year that didnt just go away like it usually did. I was pred for a few weeks, bleeding stopped, I started asacol and I darent stop taking that or even taper it at this stage. So I would say its different for everyone.

I did have a couple of questions myself, if you dont mind, you might have the same questions later on so Ill go ahead and ask.

I was wondering if anyone here still had flares even tho they were on maintenance meds? Im guessing some meds work better for some then for others. Has anyone gotten to a point when their maintenance meds stopped working so well? Did it take years? I think it could be helpful to know what we could expect might happen with this illness over the years (seeing its a lifelong type of thing).
Posted 9/15/2010 12:58 PM (GMT 0)
Welcome to the forum...!

I've had flares ranging from 3 weeks to a year in duration. In the past year or so I've learned (thanks to folks here!) to notice symptoms earlier - I watch them for maybe 3-4 days and then take quick action. I think that helps reduce severity and length of flare. I used to be a "wait and see" person... not helpful.

In general my flares have never been as bad as my onset flare. I was hospitalized twice for IV steroids and bowel rest within my first year of UC, and have not been again, since then.

I'm on the same range of meds I've always been on, except that after the first big, horrible flare and fight to get off prednisone, I have not gone back on it - if the 5-ASAa don't help, I'll do rectal steroids, but not oral.

Generally I've flared about 3 times a year..... but (knock on wood) I seem to have averted flares this past spring and late summer, so.... maybe my answer will be better, if I answered that question a year from now.....?
Posted 9/15/2010 1:07 PM (GMT 0)
It tough for me to answer because I have gone through different stages with having this disease over the last 20 years.  I will try however.

I used to be flaring all the time although I didn't know it.  This was before I was officially diagnosed with UC.  I had gone to the doctors and tried to explain my symptoms but they didn't put it together until I was just gushing blood and mucus.   Then for years I was taking Asacol with on and off again prednisone but I was still flaring 5-6 times a year.

The duration of each flare lasted about a few weeks to a few months with very little time for remission making it feel like one long flare.  This went on for about 10 years.

I would have to say I tried to stay on the ASA meds but my colits got worse over the years and eventually I had to switch to Imuran which put an end to my ulcerative colitis.  So my colitis got worse but I feel it got worse because I wasn't taking the right medication for it.  Once I got on the Imuran my UC has basically dissapeared.  I only go for a BM once a day, almost same time every day, no urgency, no blood or mucus, just normal.  My last colonscopy was basically completely normal.  So for now at least I got a grip on it.  Again, things may change in the future but it sure is nice to live a normal life never thinking about a toilet.

MyUC

Posted 9/15/2010 4:54 PM (GMT 0)
I haven't had a flare since I started Remicade (almost 3 years)


2. That depends on you really, the earlier to go to a DR to get on something the shorter it will likely be.


3. Mine has improved drastically with Remicade, but it's not cheap, even with kick butt insurance and Remi-Start rebates in still cost me about $150-$200 an infusion, which I get every 9 weeks.
Posted 9/15/2010 7:08 PM (GMT 0)
I usually had two flares each year, I think. They lasted maybe 6-8 weeks, I think.
I also haven't had a flare since Remicade.

I think my UC got better, but in large part because I became skilled at managing it and the flares. I learned what not to do to make it worse. I was very, very sick the first few years.
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