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Ulcerative Colitis
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Posted 6/7/2008 8:20 AM (GMT 0)
well hello everyone.

been awhile since ive been here.

was in remission for a lovely wonderful carefree 6 months until the other day when the tell-tale signs returned.

bummer to say the least.

im hoping this is a quick easy flare!  cross your fingers!

anyhoo,

without resorting to pred or other meds, what should i do to maybe, hopefully nip this in the bud?

i was think colifoam as it feels like it might just be lower minimal flaring.

ive been off of all meds this whole time and have been loving it.

i want to avoid oral meds if at all possible.

i wonder why it came back.

im thinking red wine.

the last horrible flare that lasted a year and half (you all might remember) i suspected started from a night on lots of red wine. well since ive been better i have avoided it just in case, and got complacent in my healthiness and had some a  few weeks ago.

so im thinking, the same common denominator...??

or

could it be from stress?

just found out my grandma has aggressive cancer and im in australia, she is in states.

my grandpa had surgery with some complications.. and i might be having some female issues in regards to having a baby.

could all of this niggling drama in the back of my mind cause this?

who knows...

but im probably going to be back here haunting these forums again.

i hope you're all well!

Posted 6/7/2008 10:38 AM (GMT 0)
The meds we take, especially 5-ASA's and 6-MP/Imuran are for maintaining remission, not so much for pulling you out of a flare.

The single biggest mistake UC people make is stopping their medications without first discussing it with their GI.

The second largest mistake made is to underestimate a flare. We want with all our hearts for it to be a little one, so we can avoid drugs such as pred.

Again, pred is NOT supposed to be used all the time. Ideally, it is used to "nip a flare in the bud" using a 2 to 4 week hammer-like dose.

Finally, although people will argue, food in and of itself does not "cause" a flare. Some foods are however exceptionally good at highlighting the symptoms we have been doing our absolute utmost to pretend are not there.

As you are in Australia, you might want to consider the stress as well as the weather. Not sure exactly where in Aus you are, but its starting to get cold all down the east coast, and that means our immune systems are being bombarded with germs, germs and more germs. Add to that the physical stress of having to pour more energy into keeping our bodies warm.

I have found the combination of winter coming on, getting sick and stress is one combination that pushes me toward a flare. Every year around this time I have some kind of flare. You might want to try mapping out when each flare starts over time. This helped me establish this pattern. It might also allow you to say, stop the medication during the summer months and begin it again around May.

Please, please, please - book an appointment with your GI asap, find out for sure whats going on and catch this flare before it gets out of control.
Posted 6/7/2008 3:15 PM (GMT 0)
Food, drink and stress don't cause UC or inflammation flares. They can cause diarrhea, just as they can in people without IBD, but the don't cause the "special" kind of D. we have. Your flare was precipitated by no preventive measures being taken.

We have a chronic disease that comes and goes as it pleases. We have choices. We can take medication all the time to prevent most flaring or we can not take medication and have more, stronger and more lasting flares. Maybe it's just my perspective, but after being in a terrible flare for a year and a half then getting it under control finally, I can't imagine even considering stopping the medications.

Now that you're in a flare, your choices are to treat it appropriately or to flare until the disease decides to go away for a time. You've been diagnosed with pancolitis. Just because your whole colon wasn't flaring doesn't change your diagnosis, just means it was in remission. Rectal meds treat proctosigmoiditis, but will not stop or prevent flaring higher in the colon. Please do yourself a favor and call your GI.
Posted 6/7/2008 3:34 PM (GMT 0)
Kazygirl, I have discovered something that rids me of a flare and puts me in remission within a few days if the flare has just started, takes longer if I have been flaring for awhile and colon is in bad shape, if it works for me I dont see why it wouldnt work for you. eat one large can of spinach atleast every two or three days( I used to say one can a day but maybe that much is not needed) and many handfuls of deshelled sunflower seeds daily and keep your sodium and sugar intake low till your in remission. these two foods never fail to put me in remission since I have discovered it. It sounds crazy but it honest to God works for me and I am completely medication free. If you try this and it works for you please write and tell my about it.

Posted 6/9/2008 11:02 AM (GMT 0)
severin...im on the gold coast. not far from you.
and the last time i got a flare was in feb/mar 2 years ago that lasted a year and a half.
you might be right with the winter thing.

cfromutah...i hate spinach. dont know if i can do that. but might have to try to see if it works.
i do like sunflower seeds tho. will let you know how it goes.
thanks for input. i read a post of yours a few weeks back about this.

judilyn...you sound very negative and throwing blame, i was in a good mood til i read your post. thanks.
i also know all about uc thanx and how it works. and dont make me feel bad about stopping my meds. just cuz u didnt doesnt make me a bad person or careless. and dont forget the forums favorite saying 'we are all different with this disease'.

also, i always took my preventive meds before and it NEVER prevented any flare and even put me into a horrible painful one for over year and half.  so they dont always work. 
i might be taking this the wrong way as my mood is not as good as usual due to uc coming back. so if u meant well, sorry, i just must have misread ur post.

and dont worry, i am intelligent enough to call my doctor.

(again, apologies if i sound like a right arse... im a bit of a foul mood)

Posted 6/9/2008 7:39 PM (GMT 0)
Call your doctor....plain and simple. It's a common sense suggestion.
Wishing away your flare and blaming it on wine or wondering why it came back won't change the outcome or its pattern.

You have a lot painful issues/situations going on in your life, and probably won't be immune to its effects on you.

You have an autoimmune disease, it will flare.

Try to not let it get to the point where you're in the same situation as before. You might have to be on meds.....it's not a failure.

If you can take the 5ASA meds...oral and rectal, try them again. At least try to put it into the equation. Pred doesn't have to be part of it at this point.

quincy
Posted 6/9/2008 9:17 PM (GMT 0)
My 2 cents: I was heading into a flare recently, the signs were all there for a couple of months and things were teetering on the edge. I should have upped my meds/probiotics and gone on a bland diet until it went away, but instead I went to a music festival and drank like a fish, which of course brought the flare out fully.

I'm not saying the booze and food caused the flare at all, but they certainly made things progress at a faster pace. I've since upped my probiotics to 5x my normal dose and am already seeing major improvements. I'm still taking my standard UC meds which may be helping as well (I've upped them a bit as well).

I think that what I'm trying to say is that a certain degree of sensibility is required when learning to manage a disease such as UC. Whilst you might think the prescribed meds are doing nothing, they may in fact be keeping things under some degree of control. Just because you can flare whilst taking them doesn't mean that there not doing anything, you might flare twice as often or twice as badly if you cut them out all together.

On a not completely unrelated topic, I've been taking VSL3 for a while and never really saw any improvement UNTILL the last week when I have been taking 4 a day instead of 1 a day. My stools are looking normal for the first time in over a year and whilst there is still pain when I need to go, it is slowly reducing.
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