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Advice from Veterans in Managing UC?

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Ulcerative Colitis
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Posted 4/13/2015 8:12 PM (GMT -5)
Hi all, I browse these forums a lot but this is my first time posting. A little background on me: I'm 21, female, was diagnosed with UC in the beginning of 2013. Currently am on 2x Lialda each day, in remission w/mostly formed stools (1x a day, sometimes 5x depending on my diet), minimal urgency/cramps, no blood. This is about as normal as I've ever been after getting UC. Historically, I've taken Asacol HD and Asacol - I don't seem to tolerate the generic version too well - anyone else have this issue?

Ideally, I would like to be off all medication forever. I refuse to take steroids or anything above the mesalamines because I'm a firm believer that there's another way to manage the condition. If anything, I could always go on a liquid diet (i.e. juices, soups, minimal "roughage" to the colon), which could help reduce symptoms in the short-term, and then see what to do from there. I usually find that eating less can help calm down a flare.

For those of you long-time UC'ers out there, what tips/advice do you have to work towards being medication free? What have you learned throughout the years that really stood out? What's something you wish you knew years ago when you had just gotten UC?

Thanks! I appreciate your help, and I look forward to participating more on the forums and contributing to other people's posts.
Posted 4/13/2015 8:24 PM (GMT -5)
My goal is not to be medication-free, my goal is to be symptom-free and inflammation-free. I tried Asacol, 6mp and a couple other meds and Balsalazide was the last med standing between me and biologics. I didn't get much better results from Balsalazide but kept after diet to lower symptoms and the combo of Balsal. and diet finally started showing improvement. Mesalamine enemas also helped with bleeding.

Aren't you worried about losing your remission? That keeps me taking Rx meds.

Post Edited (imagardener2) : 4/13/2015 8:22:46 PM (GMT-6)

Posted 4/13/2015 8:34 PM (GMT -5)
I agree with Ima symptom free is my goal as I need to be able to work. Heading into a pretty solid remission now! With meds and lots. Of them.

Some people here have good luck with nopal .
Posted 4/13/2015 8:35 PM (GMT -5)
You're best bet is to stay on the mesalamines FOREVER, even when in remission so you don't have to up to prednisone or the higher tier meds. In most cases it is not realistic to be med free and many who have tried have paid the price dearly because future flares often get harder and harder to treat, requiring higher and higher tier meds.
Posted 4/13/2015 8:47 PM (GMT -5)
Agree with Gary. Be thankful that your UC can be controlled with Lialda and hope that it is all you will ever need. I hope that Remicade lasts me forever (and that I will always have insurance that covers it).

My advice is never go off your meds unless you're prepared for a potentially horrible flare. The problem is people think they're doing so well that they can handle their UC without meds. But what they don't seem to consider is that the meds are what's giving them that false hope. Your body isn't healed, the meds are healing you. Without them, you're back to where you started.
Posted 4/13/2015 9:29 PM (GMT -5)
My tip is to not go medication free ever. And that is what I wish I knew years ago when I only had proctitis. Too bad medication free led me to pancolitis, steroids, hospitalization and immunosuppressives. I would stick with the Lialda. Not saying med free won't work for awhile for you, but really considering the alternatives why chance it.
Posted 4/13/2015 9:38 PM (GMT -5)
I tried a liquid diet last time I was flaring and I was surprised how little it helped. I was so sick, I was nauseous and bleeding a ton even while only having liquids. I really thought not eating would provide some benefit but it didn't.
Posted 4/13/2015 11:46 PM (GMT -5)
I was diagnosed around the same time as you. I spent a year insisting I wouldn't go beyond 5ASAs, adamant that I was going to beat UC with diet and later with FMT. I was wrong on both counts. To cut a long story short, my stubbornness caused me to waste a whole lot of time and endure a hell of a lot of suffering. I believe that trying to combat UC with diet alone is like bringing a knife to a gun fight. If I could do it all again, I'd have followed my doctors instructions.

I know some people have gotten to remission with diet alone, but from what I've seen, these cases are few and far between.
Posted 4/14/2015 7:55 AM (GMT -5)
hey jys -

i've been med free for a while = unfortunately, it took some time to get there - please don't follow my recipe or anyone else's, cuz it probably won't work for you -

my advice would be to get to that 1/day and stay there - if controlling your uc with diet is your goal, start working on it now while you're still on meds -

once you figure out how to stay there, then maybe start backing off the meds -

but you need to read, read, read all you can and try to figure out what caused your uc to begin with -

take your time - it's a process, not a race -
Posted 4/14/2015 8:03 AM (GMT -5)
Keep in mind that mesalamines help to reduce inflammation and thus to decrease the chances of developing colorectal cancer. As others have said, being symptom-free is more important to me than being med-free.

I hope you're grateful that the medication is helping you and that you don't try to stop it. There is a substantial subset of us who were never helped at all by mesalamines or other oral medications, and who gained relief only with biologicals or surgery. Taking your meds even when you don't seem to need them can help keep you from arriving at that point.
Posted 4/14/2015 8:23 AM (GMT -5)
one can be both med free and symptom free at the same time -
Posted 4/14/2015 8:56 AM (GMT -5)
With it being a chronic illness and not very well understood sadly in this day age still, the chances of you being able to become med free especially if the meds are keeping you in remission, is not very likely...even people that take their meds faithfully and are careful of anything else they feel has a negative impact on their disease (stress, diet) can still fall into flares and many of them at that because unless they find an actual cure, that's an IBDers life.

Remember life is nasty, wishing to become med free with IBD can turn into you having to get a colostomy at some point in your life to achieve becoming med-free, cuz life is ignorant that way. I always wanted to be a stay at home mom, but not because of some ugly illness, ya, I'm a stay at home mom alright and my kids are grown and out on their own and here I am still trying to get my health back (I developed IBS as a result of flaring for so many years with no remission with my IBD) so careful what you wish for cuz often it comes true in ugly ways you could never imagine.
Posted 4/15/2015 6:58 AM (GMT -5)
We went down a road I do not wish for you, nor should you think is the norm. Many are on this forum and other medical internet sites when they are quite sick, so it may not be a representative sample of the ranges of IBD. If you achieve remission, stay on whatever brought you there- that's my advice. Medicine is not your enemy.
Btw, your body produces bile and mucus even when there is NO food in your system, so you cannot starve out this disease. My daughter had urgency and mucus even after she had a diverting illeostomy! That lil rectum(6 inches) still produced problems when it wasn't hooked up to the food supply. I wish you well on your journey, and continued good fortune that the 5asa's hold down your inflammation.
Posted 4/15/2015 12:44 PM (GMT -5)
I really don't know why you would want advice from veterans.

Spent a year in Korea so I am a veteran.
As far as advice.
Learn all you can about the disease.
Old Mike

Post Edited (Old Mike) : 4/15/2015 1:58:01 PM (GMT-6)

Posted 4/15/2015 2:21 PM (GMT -5)
Haha Mike! So THAT's what Veteran Member means!
Posted 4/15/2015 9:30 PM (GMT -5)
Different people's UC can vary greatly. In my case, I've never noticed diet or any other lifestyle factor affecting my UC in any way.

I have to be on mesalamines or my symptoms come back like clockwork. I seem to be OK, for now, as long as I take my meds. So I don't think I'd ever be able to go med-free, nor would I try. But I don't rule out the possibility that other people can, if their cases are sensitive to dietary factors, supplements, etc. But I'd say, for now, stick with whatever is working.
Posted 4/16/2015 12:07 AM (GMT -5)
Just stud, I didn't realize we could figure out what causes UC! Interesting statement.
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