I’ve had UC for nearly ten years. I’ve gone through the standard medicine cycle, from Pentasa to Methotrexate and Infliximab; the last two were the only medicines that had any noticeable effect.
As of early 2013, I’ve completely changed what I eat, and I’m currently following the SCD and am medicine-free.
Some more about me:
I work in IT and have been living in the Netherlands for the past few months. Before that, I lived in the UK.
Good (not perfect, but good) BMs. Blood is very rare (once every couple of months or so).
Creating your own Colitis Diet
I’m currently following the SCD, with good results. I’ve been on it for a few months now, and I am medicine-free, I feel good, and I’m in much better shape physically than I was before changing my diet.
However, I started thinking carefully about my diet (with a lot of help from my partner :-) ) some time before starting the SCD. There were foods which I tolerated well (meaning that they didn’t make my symptoms worse), which aren’t allowed on the SCD. One example is rice. There are many other sources of information (mostly not specifically for people with UC) that tell you that certain foods are good for you, but these foods often turn out to be illegal according to the SCD.
What I was wondering was what other people thought about deviating from the SCD and eating foods on the “illegal” list. I’m interested firstly, whether people do stray from the SCD, and why, and also how you decide what “illegal” foods work for you.
In terms of deciding what works and what doesn’t, I can try eating a new food and seeing how my symptoms change a day or two later. My main worry is, though, if my symptoms are fine, does that mean I can assume that the new food works for me? That is, should that be the only indication? I guess what I’m concerned about is long-term effects of different foods — if a food doesn’t make my symptoms worse within a couple of days, could it still have some long-term effects that I would be unaware of (like feeding bad gut bugs?)?
More generally, are there people who follow individual diets that they’ve created themselves by trying different foods and seeing what works? (Maybe using SCD/GAPS as a guide, but not sticking to it religiously?) If there are people who do this, I’d be very interested to hear about your experiences! Does your diet work well for you? How do you tell what works and what doesn’t? Any useful lessons learnt from trying this?
written by Alex F
submitted in the colitis venting area