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Ulcerative Colitis
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Posted 10/15/2012 5:00 AM (GMT 0)
Has anyone been able to use mesalamine long term for remission? Does anyone really know how to keep uc under control long term or is it always an unknown when the next flare will hit? Still struggling with paranoia about flaring.

Currently I am doing really great, 1-3 bm a day, fairly formed. I am taper pred still currently alternating between 5 and 10mg. Isn't this when I should re-flare? Super paranoid :( Oh, not following a diet at all. Just eating- loving it, very very worried when I will be sick again.
Posted 10/15/2012 5:10 AM (GMT 0)
No ones knows. Just enjoy life and the food you are eating. You simply can't worry about the future. You have no control over it...only the choices you are making right now. I haven't seen remission in over two years. This is my first flare. Wish I was in your situation. Sounds like you are doing awesome!!!
Posted 10/15/2012 5:22 AM (GMT 0)
I know that many people are able to do so but unfortunately I've required bigger guns in the past to keep things normal long-term. Imuran has worked very well for me (5 or so years with only a few hiccups and only 1 serious flare). So don't worry; even if you don't get lasting remissions with asacol alone there are many other non-pred options. I know exactly how you feel about becoming paranoid/depressed about this though -- in a similar situation after colonoscopy last week revealed a bit of colitis... symptoms were very mild and I was hoping that it was just IBS/nerves and the prep.

Anyway, good luck with the taper. If it helps to ease your mind I might take things a bit slower. 10mg is NOT a high dose of pred and it really shouldn't cause any long-term side effects so long as you aren't on it for months and months. It's just above normal (equivalent) body levels in fact. I've often tapered at a 1mg per week rate once I near the 7.5mg mark. Also, don't stick with a strict schedule if you and your GI are OK with that. Instead, just go by how you feel and slowly taper as you are ready. If there's any discomfort just hold the dose for a while and hold tight until it settles out. The whole point of tapering is to leave you in good health which will be conducive to a long remission; rushing it along at the expense of some lingering inflammation only increases the chances of it not working well, and really won't buy you anything in terms of side effects when the dosages are this low. Easier said than done I know, but remember that nerves never help!
Posted 10/15/2012 5:42 AM (GMT 0)
I was able to come off pred twice (only done it twice) while on asacol and was in remission for a year or so the first time. Longer the second time.
first time coming off pred I had no diet restrictions and was just starting a food journal. I wasn't flaring, but not happy with my remaining symptoms. That's why I started changing my diet.

Just listen to your body. Perhaps you're one of the lucky ones who don't need to change anything!

My body was telling me that things weren't quite right, so I listened and changed things. It took a long time, because it just sucks to quit eating stuff you love, especially easy foods. But ultimately I choose daily to feel better rather than eat every single thing I used to.
Posted 10/15/2012 5:49 AM (GMT 0)
Thanks for the replies :) I feel like my main trigger is stress. The less stressed the less sick I am. I started a food journal too so I can see what does what so hopefully all will go well.

Btw hekela how did you know e cig was helping?
Posted 10/15/2012 6:17 AM (GMT 0)
Because it got me out of a flare.

And tapering it brings certain symptoms back (increased BMs, having BMs during the day instead of just morning, some urgency).

Yep, stress is a big one for me too.
Prior to the nicotine I would always have to poop if we stopped at a store where I didn't know where the toilet was.
Toilet anxiety leading directly to the need for a toilet is so annoying.
Posted 10/15/2012 6:24 AM (GMT 0)
Omg so true! I have had to work on de stressing so much lately. I actually started e cig 2 days ago because I ended up smoking a cigarette the other day and loved it, took the stress down, but I wanted to do e cig instead of real ones. So far a pretty big fan. I used to smoke cigarettes occasionally a few years ago and always loved them just wished they weren't so unhealthy so pretty excited :)
Posted 10/15/2012 8:26 AM (GMT 0)
I know no one knows whats causes UC but I like to at least 'pretend' that I am keeping my UC at bay by eating healthy, avoiding 'bad' foods, de-stressing as much as possible, taking my meds and supplements, drinking 2Ls of water per day and sleeping well.

As a result, these things keep me from being too paranoid about the next 'flare' (regardless if they are actually helping or not). Aside from them, I try to accept life and have faith.
Posted 10/15/2012 11:43 AM (GMT 0)
For sure it seems that is all there is to do for it
Posted 10/15/2012 11:58 AM (GMT 0)
I wished I had a crystal ball to let me know if I am going to flare again. I think we all think about it, not the if, but the when the next one is going to hit. But try not to let it consume your train of thought.

Stress is a big factor for me too. But usually I don't flare DURING a crisis but after. I find that during high stress times, my anxiety goes into overdrive. So I have a prescription for Klonopin that I take for those occasions. It helps keep me calm.
Posted 10/15/2012 12:26 PM (GMT 0)
Slightest bit of stress and I immediately feel it in my gut. I just don't sweat the small stuff and don't worry about things I have no control over. I'm taking Lialda and Rowasa enemas and have been in remission over a year and a half. Only two flares since diagnosis and those were caused by stress from my job that I decided wasn't good for my health and quit. :)
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