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Posted 8/14/2009 2:27 AM (GMT 0)

I had a few questions for those in here:

1. How many flares have you had since diagnosis?

2. How many times and about how long were you on prednisone(if ever)?

3. How many times a day do you typically have a BM when not in a flare?  When in one?

4. Does stress contribute to your flares?

I have been flaring off and on since I was diagnosed in 2001 (age 20).  I am currently in a flare and my dr won't put me back on prednisone and says we are getting near to the "bottom of the barrel" before remicade or surgery.  I was just wondering what lifestyle and diet changes you have made to get into remission (and stay in remission if so)?

Some history about me:

Diagnosed 2001

Initially took 8 Asacol daily/Cortifoam nightly

Can't remember how long it took but was eventually in remission for 1 year

Flare 2003 when I stopped taking meds for 6 months (STUPID!)

Took Prednisone/asacol/imnuran until under control (can't remember amounts)

Remission for 1 year

Had another flare 2005

Took 60 mg Prednisone/ rowasa/colazol/imnuran until under control

Remission for 2 years

Flare March 2008 (so frustrating after 2 years!)

Prednisone/Asacol/Imnuran (off prednisone 2/09)

Under control for 5 months then started flaring this year in June.

Currently Flaring, but slightly better with the following meds since July 27

Taking 400mg Asacol 8x daily/rowasa enemas nightly/probiotics

  

I just was looking for any advice as to what has worked for you, what meds I could take to help get and stay under control.  Your help is greatly appreciated!!!  No one is alone in this.

Posted 8/14/2009 4:29 AM (GMT 0)
Well when I was diagnosed, oh god, I dunno... I must've been going like ten times a day. Since diagnosis, I'll say I've had around three and a half flares. Three there at the beginning, and the half will be the state I'm in right now (low rectal inflammation so I'm actually leaning towards being constipated). I was on pred two or three times, for a month or longer each time (it's hard to remember). When in remission I typically have one bm in the morning. With rectal inflammation it can be a couple days in between, and while actively flaring I'd say three, unless it gets really bad. Then more. It just depends.

I don't think stress contributes to things much for me. Although when I sleep at my aunts I poo a lot and get cramping... maybe it's the air XD

I started out on three asacol three times a day, that was not working, thus the multiple bouts of pred. I am now on 125mg of azathioprine and it kept me in remission for a few years. I recently started birth control and the longer I took it the more inflammation I got; I caught it early and am now on rowasa every night (still trying to figure out what to do about the birth control).

Diet doesn't affect me much. I started taking turmeric (amount in my sig) and noticed a difference. I get it at Meijers. (I tried a turmeric+bromelain and it turned my stool very watery.) I didn't have much luck with probiotics but drinking kefir every night helps. I also stop eating at 9pm and start again with breakfast in the morning. I drink more water... eat more raw fruits and veggies. Steak tends to block me up a bit, and it's not good for diarrhea either.

When I'm flaring, I eat more starchy foods (potatoes, pasta, etc) and chicken and fish for protein. Some people here don't like starchy foods, but I'm not sensitive and they help to bulk up poo and slow it down for me. When I'm constipated I add extra fiber and water. Also when I'm flaring badly I have to be wary of apples and lettuces/greens as they make it worse, and I pass lots of undigested salad if I eat it.

Also with the imuran I don't seem to get sick more than regular people; when I'm around sickies I start taking vitamin C.

And when I lost hair while on pred, my doctor had me get a blood test to check my zinc levels, they were low, I took zinc and it helped. Some people here also use B12/Biotin or something. I never used it but it must work.


Good luck! I'll add more if I think of any. Sorry my numbers and dates and things aren't specific. The early period was kind of a haze.

PS: I seem to be okayyy with drinking, I don't recommend it at all, especially with your frequency of flaring.  Even with this mild inflammation, one drink gave me some blood.

Posted 8/14/2009 4:38 AM (GMT 0)
ElephantPipe,

Thanks for your advice/experience. I was just taken off imuran and my DR just says we are "running out of options" so I am just grasping at any straw I can. When flaring (now) I too take starchy foods to add bulk and keep me regular. I hear mixed reviews with just about everything so I know it depends greatly on the individual....just figuring out my options.

Thanks again!!!
Posted 8/14/2009 4:42 AM (GMT 0)
No problem! Looking at the history you gave us, I'm wondering why you don't add the rowasa and colazol again? With the imuran I mean. It seemed to keep you in remission longer.
Also, how much imuran were you on?
Entocort is another steroid option, I've never tried it but they say there are less side-effects. Also some people are on 6mp, mixed reviews, again, I've never tried it. Maybe you could boost up the enema power with some steroid enemas? quincy is the enema expert though.
Posted 8/14/2009 1:25 PM (GMT 0)
1. How many flares have you had since diagnosis?
I have had I think 7 flares - since 1986. However, I have been having continual D and cramping etc without blood for over 2 years now.
2. How many times and about how long were you on prednisone(if ever)?
4 times
3. How many times a day do you typically have a BM when not in a flare? When in one?
1 - 3 when not flaring, up to maybe 10 when flaring
4. Does stress contribute to your flares?
Not that I am aware of.
Posted 8/14/2009 3:28 PM (GMT 0)
I can't really be of much help, because I was just diagnosed in January. But I'll "play" anyway!

I've just had the one flare, during which I was diagnosed.

I had to use it to get into remission. I was on it from mid March through early May, so 1.5-2 months. But I was on 10mg or 10mg every other day for most of that time. I could have gone off earlier, but my doc wanted to make sure I got through an interview at the very end of April before I quit).

When not flaring I have 0-3 BMs/day. When I was flaring I had 15-20/day at my absolute sickest.

My first flare was triggered by childbirth, so stress could have come into play, but I think the hormone craziness is the more likely culprit. I also had problems with post partum anxiety, but who knows if that made the flare worse of if the flare made that worse.
Posted 8/14/2009 3:47 PM (GMT 0)
At my worst, I was going every half hour all day. Even during the night. It was horrible and I thought I was going to die.

Since diagnosis, I have had 3 flares. One flare was long, almost a year. The others were shorter, but still between 3-6 months.

I know stress comes in to play for me, but that's because I get stressed about having a flare... I don't think that stress is the actual cause of it. It just doesn't help me any if I feel crappy already.
Posted 8/14/2009 4:05 PM (GMT 0)
I flared from June, 2001 until March, 2006 (I was diagnosed in the fall of 2001). I was going 15-25 times a day, despite being on various combinations of Asacol, Pentasa, Colazal, Prednisone, Entocort and Azathioprine. I started Remicade and have been in remission ever since. I just recently tried to flare after two courses of antibiotics, but that's been controlled with hydrocortisone suppositories.

I was on Prednisone off and on for six months, mostly on. Since I was never able to completely taper it, my GI changed me to Entocort, which supposedly didn't have the long-term side effects of Pred. I was on that from about June 2002 until January 2006.

Stools were 15-25 in flare, 2 or 3 now. Plus a loss of the horrible urgency.

I can't say I've noticed that stress really affects my flares. Since in remission, I've been through several surgeries and a major move across the country without flaring. I'm also not particularly affected by diet. When I was flaring, I avoided really high-fiber, high fat and spicy foods; now that I'm in remission I eat a normal healthy diet, but still do have to be careful about how many really high fiber foods I eat.

I can't tell from your summary, but do you stop taking your meds when you get into remission? This is usually a bad idea, as your next flare will likely come sooner and be worse.

Here's hoping you find a combination that works for you soon.
Posted 8/15/2009 12:53 AM (GMT 0)
Elephantpipe - The dr wanted me off imuran since he didn't think it was working. I have been on it and asacol since the very beginning. We haven't talked about colazol or maxing out the asacol yet. I think he is waiting to see how the enemas/probiotics go. (he is pretty conservative) I had been on 100mg (50 x2 daily) since the beginning. Is Entocort the same as cortifoam? I have tried those and they didnt seem to get far enough up to calm things down. Today was a better day, I think things are just going slow so far...it has been only 3 weeks since my enema/probiotic treatments started. Thanks so much for your help and advice, it really is appreciated. I will have to see if Quincy has an opinion on the matter.

Mitzo - Thanks for the info, I am right there with you as far as the frequency. I do wonder if stress is a trigger for me since this last flare came up when I traveled and was very busy for work. The previous flare was when I was graduating from college and getting ready for my job.... What does your diet currently consist of? Any restrictions? Thanks again!!!

Fruitgirl - Congrats on your remission! Thank you also for your input. I didn't mind the side effects of prednisone but I didn't like being on it long term (6months-ish at a time). Have you restricted your diet or seen any dietary triggers for you yet?

Laura220 - I know how you feel with the going to die, always going. I work some long hours closely with my boss at times and its very embarassing for me to run the bathroom constantly. I get stressed about flares too, I am trying to get into stress reduction techniques to hopefully rid myself of some of that. What do you think of Lialda? Do you know of any difference between it and Asacol? Thanks for your help!

Judilyn - Other than the first time, I have stayed on my maintenance drugs (asacol/imuran) between flares. Do you like remicade? I have heard mixed reviews about its effectiveness on UC. I also know its pretty expensive and that concerns me if I have to go down that road. Any major side effects that you had with it? I am trying to eat a bland diet...nothing spicy, fatty, greasy. Do sugars effect UC flares? I just hear about people that are able to go into remission permenantly and I just want to get there any way possible.....other than surgery, but am willing to look at it if needs be. Thanks for your input and advice, I appreciate yours and all the other remarks so far.

Its always nice to know that others have gone through exactly what I have and that I am not alone.
Posted 8/15/2009 1:26 AM (GMT 0)
I believe Entocort is an oral steroid. And I suggested some kind of enema because even though it won't treat all of it, it might give you a boost. I've never heard of taking the imuran twice a day, that's strange and I don't think it would make a difference.
I just want to add again that the turmeric is worth looking into. Also, you may go so far as to try dandelion tea (put agave nectar in it to sweeten, it works better than honey, and maybe some cinnamon). I find it helpful. Don't drink it unsweetened, it's disgusting lol. But the agave makes it good. Agave nectar also replaces sugar well, now I use that on my strawberries rather than insane amounts of sugar lol
Posted 8/15/2009 1:34 AM (GMT 0)
Hope this helps -

1. How many flares have you had since diagnosis? - 100's in the last 5 years
2. How many times and about how long were you on prednisone(if ever)? - Everyday since diagnosed in 2004 or so.
3. How many times a day do you typically have a BM when not in a flare? When in one? - In flare, many times a day. No flare - 1 per day.
4. Does stress contribute to your flares? - Yes, I think so...
Posted 8/15/2009 1:52 AM (GMT 0)
maxboy -

Lialda vs. Asacol is tough.. First of all, Lialda is Asacol stuffed into one pill -- this means that one Lialda is equal to 3-4(?) Asacol pills. It's supposed to be 'once daily' but I couldn't take all 4 Lialda at once. I had to space them out, even though my doc didn't think that made a difference... Well, when I took all 4 Lialda at once I had bleeding pretty bad. As soon as I spaced them out during the day I was completely fine.

I started out taking 16+ Asacol a day right after my colonoscopy diagnosis. I was on that from June - November 2007. I remember over Thanksgiving, my aunt(a GI doc) suggested I try Lialda. The Asacol was working for me, but I think my body was all weird with taking 16+ pills of just the Asacol a day. I had some blood during those times even though I was only going to the bathroom 'normal' regarding the frequency. Lialda brought on horrible headaches after a while, and I am happy that my dose has been cut in half this year because of the Imuran. So, I was good with the Lialda for a while until I randomly started a flare. That was before I knew a lot about this, and I think I ate some food that I shouldn't have. I was on Entocort + Lialda for nearly a year when my headaches got bad.

Entocort (budesonide) is a steroid, specifically a synthetic corticosteroid. My cousin, who has Crohn's, had a ton of success with it. My other cousin, who has UC, also had success with it. I had great success with it without the nasty side effects (minus headaches after being on it for a year). Lots of information spots say an 8 week run with it, and up to a 3 month run with it. As you have probably read, a lot of us here have been on steroids at some point for 3 times longer than what is recommended. As with any steroid, there are risks with Entocort as well. I was scared to take it...but I wanted my life back more, so I just did what I had to do when diet modifications/natural remedies would not work.

I have eliminated a lot of stress in my life because my well being depends on it. This means avoiding certain friends (yes, I know it's bad, but they know why I do it) because they are drama magnets. Before UC I was stress free, no anxiety or anything like that. UC has made me worry, but I am working at calming that down on my own.

Hope that helped...even if it's long winded.
Posted 8/15/2009 4:57 PM (GMT 0)
maxboy, I haven't noticed any issues with what I eat. When I was flaring, it felt better to eat low-residue, but now that I'm well nothing seems to bother me, other than things that did before. I've always gotten bad diarrhea from artificial sweetners and MSG, so I'm even more careful to avoid them now. If I eat a lot of fruit and veggies and such in the course of a day, I'll have loose poop the next day. But, that's NORMAL! I was like that even before UC, and I think anyone would react like that. I eat a lot of fruit and veggies on a daily basis, so when I OD, I *really* OD!

I also didn't have any of the short-term side effects other than slight moonface and a mild case of the munchies, so I was actually OK with using it. But I'll NEVER use it long-term. I'll use Remicade or have surgery before I let that happen!
Posted 8/16/2009 12:08 AM (GMT 0)
1. How many flares have you had since diagnosis?
Since diagnosed, just the one that seems to be persistant low-level irritation. However, I've actually had the disease for at least two years prior to diagnosis, in which time i've probably had around 4 flares.
2. How many times and about how long were you on prednisone(if ever)?
Once, about 2 months
3. How many times a day do you typically have a BM when not in a flare? When in one?
Not-1-2, In-2-5
4. Does stress contribute to your flares? Probably
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