Nicecupoftea- your view is very interesting, certainly different to everything else I seem to have read. Do you tend to keep your diet just the same whether your in a flare or not then?
Yeah, but that's because I'm never not
in a chronic flare. I've had Crohn's colitis for 16 years and for the vast majority of that time my disease would rumble/simmer along at roughly the same pace for months or even years at a time. But every so often I would have an acute flare-up and when it was over, my baseline activity would be a little worse than before.
The acute flare-ups were usually brought quickly under control with steroids, but while they lasted I couldn't really eat anything, bland or otherwise. These days, after two surgeries, the cycle seems to have reset itself and I'm in a chronic but stable flare: c'est la vie.
The severest diet I tried - an elemental liquid diet - made me much worse and I didn't last for longer than 2 weeks (it was meant to be a 6 week course). I also tried changing my diet in other ways, but found it didn't make the blindest bit of difference whether I ate the most expensive organic meat or pop tarts: it all caused diarhoea, pain and fevers when it passed through my lower GI tract. The *only* thing which helped was to eat less, so I did. Eventually I ended up semi-anorexic and very underweight. The only thing which reversed it was becoming so bad I needed to be on steroids almost continuously for 18 months; on steroids I was 'well' and could eat handsomely.
I don't post much on this board partly because I find myself getting more and more impatient with some of the diet posts. People should feel free to follow whatever diets they want to of course; and even posting about
it is fine. I just don't have much time for the notion that I am expected to "respect" diet as an equal treatment to meds. I don't believe it and the science is with me on that one. People may not like it, but GIs say that diet doesn't make any difference for a reason: that's because it mostly doesn't (and what little evidence there is favours Crohn's (small bowel Crohn's at that) over UC).
People who have severe disease also need to get on the strongest meds as early as possible, and not waste time on diets, if they want the best possible chance of saving their colon.
Edit: Sorry, I am just unbelievably cranked today. In large part as a result of my crap stomach, ironically enough. And, no, there is no food under the sun which won't
give me symptoms: the concept of eating x, y and z foods and having no symptoms doesn't exist for me. The benefits are I can eat small amounts of everything, 'cos why not. The drawbacks are if I want a respite I can't have one: I have to eat.
Dx Crohn's in June 2000. (Yay )
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP
Post Edited (NiceCupOfTea) : 8/8/2016 12:53:45 PM (GMT-6)