Posted 2/19/2016 3:39 PM (GMT -7)
Thought I'd share my experiences achieving and maintaining remission from UC, in the hope that it can help some others here. I don't think it will be useful for everyone, but there may be some of you who have a similar form of UC to me, and who can try something similar.
Firstly, I've had UC for around 13 years. When in a flare, I'd have a large number of BMs per day, with blood and/or mucus, the works. Was taking Asacol (6x 400mg) and Azathiaprine (3x 50mg), and prednisone when in a flare (normally around 40mg, then tapering slowly down). None of the meds were particularly effective for me. I tried a very restricted diet, which was boring, and difficult socially, and also not very effective.
I first achieved remission about 3 years ago, largely through luck. I had a sore throat and my flatmate suggested I try onion syrup for it (to make onion syrup: cut up half a white onion and mix with a couple teaspoons of sugar. After a few hours the sugar will turn to syrup - drink this and throw the onion bits away). It didn't do much for my sore throat, but for the next few days my UC was gone. Brilliant! Except, I couldn't just have the onion syrup every day - it would lose its effectiveness. I need to have a gap of a few days before I go back to the syrup. But then I knew what to look for, and I quickly found other foods that would have a similar effect. Currently my list is something like:
- onion syrup
- sunflower seeds
- red cabbage
- aloe vera drink (you know, those sugary soft drinks that have aloe vera pulp in them)
- coconut water
Fortunately all things that are widely available and inexpensive :)
Note that I'm talking about VERY SMALL amounts of any of these - when I have sunflower seeds, I'll have about 8 seeds. Onion syurp: about a teaspoon. Cinnamon: 1/4 teaspoon or so. I'm not particularly exact about it, but it really doesn't take much. If I have too much of any of these items, then I'll have a pretty serious reaction - a couple of really intense BMs within a few hours, which means I can't have the items on the list as normal ingredients any more.
I cycle through the list items, and by the time I get back to the start, there has been enough of a gap and they all remain effective.
Currently I'm in complete remission, 1 or 2 normal BMs a day. I tapered out my meds and have been completely med free for 2 years now. I just need to remember to have one item from the list every second day or so, to keep moving through the list, and to keep the amounts very small. Otherwise, I eat a normal diet, with no restrictions.
Now, I'm not saying that this exact process and these exacts ingredients are going to work for everyone, or even anyone. But hopefully, some variation on this system would be helpful to some small minority of UC sufferers, and you might be able to make your own list of ingredients that are helpful for you. Once I had the idea of what to look for, I rapidly found my list of ingredients. In some ways, it is composed of items I would previously have tried to avoid, eg I had some red cabbage for dinner, and shortly afterwards had some pretty intense BMs. In the past that would have made me completely avoid red cabbage, but instead I tried eating a very small amount, and it worked for me.
So, that's about it. I hope this post is helpful to some of you out there - make some onion syrup and try it out! Feel free to ask me if you have more questions, and good luck :)