stop doing that or you'll go blind !

My cousin was dx'ed with UC when she was 16. She's 49 now. From age 16 to age 30 she took meds. The one that kept her UC at bay was 6mp. One day she decided to stop taking it. So now it's 19 years later and she hasn't had a flare since then. I hope I just didn't jinx her. It is pretty unusual. She goes for her scopes....her colon is pristine. Maybe she never had UC after all??

I know a woman who was very ill with UC at diagnosis - she was put on 6MP which stabilized her condition and her general health improved a great deal - she stayed on 6MP for two years. She now keeps things under control with diet and meditation, she stopped the 6MP about 3 years ago I think. Last time we spoke she was in excellent health!

For me, it's a risk analysis sort of thing. There's a lot of research showing that the #1 reason people flare is non-compliance with meds. Since the mesalamine drugs have a very good safety profile (and I have zero side effects from them) and have been shown to reduce the incidence of colon cancer in UC-ers, it's much less risky, both for my long- and short-term health, to continue taking meds. Also, since I've had such success with the mesalamine drugs, I think anyone should be able to understand why I recommend staying on them.

The doctors don't even agree about whether maintenance meds should be continued for life as I have gotten conflicting advice. Seems like everybody has their own stories of flaring and remission that support countless permutations of culprits and saving graces. Managing our illness become sort of like cooking - after you've done it for awhile and gotten the feel of it, recipes become a rough guide we can alter at will and still end up with a satisfactory result.

For myself, my remission came out of the blue with seemingly no assistance from medications or diet/lifestyle. Also my default state of mind is that all I need is a Good Attitude and a Healthy Lifestyle and all will be fine. Add to that a certain amount of uc denial and an acceptance of intestinal discomfort as normal, I have gone for as much as a year without meds. What I've learned is that I can go long periods with no meds and no symptoms, but the bottom line is, I do need to take medication for my colitis. It keeps creeping back otherwise.

quincy said...
I think a LOT has to do with the initial doctor whose care we're under. The rest can go to good results or extremely bad...depending on many variables.

No wonder I was stuffed then. Might as well have had a computer diagnosing me; it would have been more personal.

Anyway, I think there is a certain amount of truth to that, although it probably makes more difference if your disease is initially mild (as mine was). I would say the most important factor by far is getting the inflammation under control and if that involves a blitzkrieg with heavy-duty meds for a while, so be it. It's uncontrolled inflammation which causes all the long-term damage in IBD. The damage will vary according to whether it's Crohn's or UC, and extent of inflammation, but either way it's not good news.

Re soystud's original post. There are plenty of anecdotal examples of people with IBD remaining in remission for years or even decades without being on meds or following a special diet. There is absolutely no doubt that some people who are on maintenance meds are on them unnecessarily. But how do you propose to find out who are on them unnecessarily and who needs to be on them to maintain their remission? Stopping a biological med brings a high risk of forming antibodies to it; if you're gonna try stopping any med as an experiment, make sure it's azathioprine (or a 5-ASA) and that your CRP is lower than 20, your haemoglobin higher than 11, and neutrophil count lower than.. er, 4 billion. ('cos those are independent risk factors of relapse).

www.getaid.org/01-publications/Documents/Aza_Withdrawal_TRETON_2009.pdf

On the other hand, you also have a high chance of not relapsing if you come off azathioprine after 3.5 years of remission:

www.sciencedirect.com/science/article/pii/S0016508505004488

Literally done my last googling of the night. Boy, do I know how to have fun on a Friday evening >.>

All a bit insane. This disease is so individul that advice seems hollow. I am glad that we mostly position things as" what works for me". I am sorry that after all of my thinking/ worry/ study/ I can still only offer small advice. Had almost 4 years of remission. Food irrelevant,supplements irrelvant, then...I am desperate for any crazy ideas... We had a big disease, very fast. I envy those deciding on moving on from 5 ASA 's when the big biologics were our lifeline.Will keep an open mind on Friday or Saturday's! Wish the best for us at all stages.