Dear all in the UC community

Hi, my name is Terrence and I’m writing to you seeking for your support and your advice for an idea of a project that I have.

Firstly why am I addressing you, or us, rather? Well, I have ulcerative colitis myself. I had my first flare-up in December 2011. about one month later, I was diagnosed with pancolitis via colonoscopy. I was 22 years old then, a sophomore in college. The news and the physical toll of colitis was exhausting. I became a part-time student that Spring semester. Thankfully, with the love and support from my friends and family, and as well as a prescribed regimen of corticosteroids and mesalamine, I was able to achieve remission a few months later.

The consequences of this experience had a momentous impact on me. Since my remission I’ve made it a personal commitment to lead a healthier lifestyle. By paying close attention to my food choices and exercising regularly, I’ve been able to stay in remission.

I’m currently a graduate student pursuing a DPhil Degree in magnetic resonance physics. When I am not in the lab or working on my research, I’m often reading up on ulcerative colitis, whatever I can get my hands on. Although my background is not in biology, biochemistry or medicine, there is something about our condition, perhaps that it’s a “disease without a cure”, that really speaks to the aspiring scientist within me.

So what is my idea? I come from a quantitative background. And those of us who work in the quantitative sciences chase after the same thing in one form or another and that is to find patterns in data sets.

The questions for which I, and hopefully you as well, desire for us to have answers for are:
(1) Are there foods or combination of foods and supplements that have a positive impact on IBD? (2) What mathematical techniques can we exploit to reliably elicit this information?

A substantial percentage of inflammatory bowel disease patients use alternative treatments. A variety of dietary treatments show promise, but they require further research before they can be recommended. While many of the research for IBD occur at the level of molecular biology (for example: what effect does a particular vitamin have on the mucosal lining in mice) there has been very little long term research carried out in the statistical arena. That is where I wish to begin.

A professor at my institution who focuses on medical statistics and I have discussed this idea for a project to some length. While we are both eager, we realize that possibly the most challenging part of this project is collecting the data we need, and the correct data. This project would involve individuals tracking which food groups and in which amounts he/she consumes, relapses of UC or when conditions worsen, etc., over a prolonged duration of time. Such studies have yet to be done in this form, and therefore could offer interesting results to how nutrients impact progression of UC in a population.

I want to turn the question onto you guys now. What do you think of this idea? Would you be willing to participate, to fill in a daily log online (or at least roughly daily) of what foods you have consumed and in what quantities for more than 6 months, 1 year? I would aim to develop a platform that would assist you in entering of this information, to make the experience as user-friendly as possible.

To conclude here I just want to say again that my motivation to pursue this question comes from an innate urge to know. I don’t have any financial interests or conflicts of interests to declare. As someone afflicted with the disorder, I’m inspired to do the best that I can to help, to contribute hopefully just a little more to our community at large.

Thanks for making it all the way down here, and thanks in advance for any comments or feedback! They would be greatly appreciated. You can learn a bit more about me, my background and my research here: http://www.fmrib.ox.ac.uk/team/graduate-students/tianyou-xu And if you have any questions you would like to address to me directly please feel free to contact me at [email protected]

T

Been there, done that. For five years, I sequentially tried every diet and supplement I heard of as a possible treatment. None of it made the tiniest bit of difference in my symptoms. Yes, I kept a diary, yes I followed the regimens closely. Nothing.

A little bit strange that you achieved remission by meds so easily and now you want to devote your current life to UC research, in particular UC treatments without meds, using a healthy lifestyle. Are you taking any meds at all now? What exactly do you mean by a "healthier lifestyle"? That's painting with a pretty broad brush. Could you give us details on what that means? I hate to rain on your well meaning parade but I really don't see how this is all going to work effectively. As Fruitgirl mentioned controls are needed and with everyone's UC being different and everyone taking different drugs and having differing levels of disease I just don't see how you are going to gather any meaningful statistics. You only have 40 posts which means you haven't been on here much. I've seen thousands and thousands of posts, if not tens of thousands in the time time I have been here and the only statistic I have been able to see is that no two cases are the same, no two treatments are the same, no two patients respond the same to foods, etc. If you look at all the diets people here claim to have success with, many of them are diametrically opposite. One person claims to go into remission by avoiding all meat while others can go into remission by eating Paleo. Some eat healthy fruits and veggies while others actually do better on burgers and fries. Many have found that diet had absolutley nothing to do with their disease, either coming down with it or curing it. Others came down with UC while already living a healthy lifestyle. The only statistic I can see is that there is no rhyme or reason to this disease. It is autoimmune and like all autoimmune diseases, even the medical professionals are stumped.

gary, the number of posts has very little to do with how much information someone has garnered from this forum -

your length of time to post ratio is off the charts - doesn't really mean anything tho -

and for someone who hates to rain on parades, you sure seem to do it a lot -

lighten up -

I think it's a wonderful idea, and well-intentioned at that, but you are asking people to chart and log data. Surveys and self-driven logs are notoriously inaccurate forms of information gathering.

In surveys, the subjects have heavy biases and tend to favor positive responses. In logs, the subjects are forgetful of what they eat, and self-tracking measures like an app require a great deal of effort and time. Very few people are going to do it.

This doesn't just apply to you. It takes a darn good scientist to construct an appropriate study and this is why many studies get picked apart so easily (and also why pharmaceutical companies hire ghost writers to "present" information). Most just fail at it because they have no idea how to do it.

If there were some way you could aggregate the emerging data on the mircobiome and make that available to everyone here, then that would be really awesome. For example, our gut bacteria do not favor the lectins found in gluten and gluten-avoidance is often recommended to achieve a healthy microbiome. We can soundly say that a good microbiome and higher bacterial diversity in folks correlate to less autoimmunity issues in populations.

Best.

Nice idea but I don't think you will get any valuable information. Well controlled clinical trials of various diets would be very interesting but I believe self reporting and self assessing will not work with UC. Personally I don't believe that diet can do anything but reduce or aggravate symptoms. For most people(like me) that is simply removing fiber and irritants like alcohol or caffeine while flaring. But you have a significant number of people with very common problems like IBS, food allegories/intolerance and of course the common problems of anxiety and food phobias that pollute the data. I don't think people are very honest about what they eat and how their UC is going. The placebo effect is very significant with this disease, and the severity and effectiveness of meds is extremely variable.

I have been here for several years and you get a new diet or supplement craze every month. The pattern is normally that somebody claims great results usually in a very short time. I bunch of people try it for a week or 4, and most give up. Never heard from again. What valuable result would you get surveying that? One of the most significant effects of this disease is constant worry and stress over your "poop", obsession with what you are doing to yourself to cause flares and just general hypochondria. I do believe that eating a healthy diet, exercising and getting your head together will improve any health problem but how do you measure that? Two people can follow the Paleo diet for example, eat very different things. One persons version could be very unhealthy or not helpful to UC.

Soy's idea expanded would be very interesting to me. If there was some way to lock up 100 UCers and feed them various foods then measure their gut flora and flare status daily for a decade, you might get some great information.

I am not that happy with traditional medicine. I worry about drug safety and how no drug works that well.It is horribly expensive. I wanted desperately to discover a diet or supplement that would help. What a managed to discover is that almost all diets and supplements have almost nothing to back them up and basically a shot in the dark. I eat pro-biotic foods, eat beans and other resistant starches daily and take fish oil and eat fish regularly. I eat lots of vegetables and fruit and avoid refined and processed foods. I am scared that RX meds aren't tested enough but their level of testing blows alternative medicine away. The A-D rating system used for supplements considers only those with an A rating to be at the level of effectiveness of an RX drug. Guess how many supplements make that grade?

As a data head, I like tools and processes that help identify root causes to a problem. Since 2011 I've tracked my discrete UC symptoms, use of herbs, pharmaceutical products, etc. On a personal level it's been helpful to validate what helps or hurts my condition. Sadly, I've yet to encounter a physician who likes me sharing health trend information, whether it's numeric or in a chart. In my experience the medical establishment prefers patients who are both quiet and compliant.

I support the concept of identifying key measurement areas for UC, but the human factor will drive you crazy. The path to acquiring UC differs from person to person. There are also many ways UC symptoms are triggered and managed. Not every trigger or therapy works the same for everyone. You may be able to populate a data base with the data from ten or twenty thousand patients but you'll just be identifying trends that may not be statistically significant.

I diligently recorded my own diet for six months before realizing what I ate wasn't as important as what I avoided when my UC was acting up. I'm on the fence about participating in an external study since I'm rolling my own analysis here at home. If you proceed with a project that collects data from the UC community, I recommend making the effort quick and simple for everyone who plays. I managed a few automation efforts that required public data input and if something can be screwed up it will be. Unless they have some skin in the game, your subjects are going to quickly find reasons why they don't have the time or interest in populating your data base. It's just human nature.

Good Luck.

I'm with Gary on this. Controlling for medications would be impossible. The OP is on Lialda, so no matter your love of healthy eating, you cannot discount the power of the drugs. I've eaten well for the past 25 years (which I describe as food with few ingredients), and BAM!, my worst flare hit late last year. I'm doing great now, but it's thanks to the drugs (and probiotics perhaps). I've already got a detailed food and symptom journal dating to December, so I've got your data ready.

This is approved.

Hi guys,

First, a huge round of thanks for all of your comments. I'm really happy to hear all of your thoughts, ideas and suggestions.

Next, to answer some questions (garylouisville and IamCurious): I'm currently completely off medications. The two supplements that I take regularly are Pearl Probiotic Intensive Care (once every 2 days) and Vitamin D3 (5000IU, also once every 2 days). My diet before UC was high fat, high carbohydrate, high protein, high sweets. I was and still am a middle distance track runner and my dietary focus back then was simply on calories and carbohydrates. Since UC I've cut out red meat, all alcohol, diary, significantly reduced my intake of gluten (though I cheat from time to time) and based the majority of foods on vegetables and fruits. As for protein and fats, I stick with anything high in omega-3, so mostly sea food. With it I am able to stay in remission without medication, resume training and get back to the same level of fitness I had prior to UC.

My own experiences persuaded me to believe that diet plays a role in managing the conditions of UC. That said, the point here to be made is that as a collective our experiences are immensely diverse. So when it comes to the question of whether diet affects UC and there are two divided camps, there is no just or rational way for anyone to say who is right and who is wrong because we are all so darn peculiar.

I read a lot of comments concerning the volume of variables in this study. Indeed, the sheer number of variables is non-trivial. Of these variables, I also agree that probably the most important one is whether one is medication. And if so, which ones, in what amounts, for how long, etc. As you say, medications complicate the analysis because it has arguably the most effect in modulating the conditions of UC. To find a way to isolate the effects of *that* component so to identify what underlying effect diets may have will be a challenging task and demands careful consideration.

Perhaps one way around this issue to only consider data from those who have achieved remission *and* are currently off of medications. Though I imagine this group may be small (?). This approach would better isolate for the effects of nutrition. A possible way to implement this is to analyze the subsets of data separately. This way we can control what we want to look at while keeping the survey open to everyone.

As Guardian7 mentioned, surveys are indeed notorious for inaccurate information. This is why if such a project is undertaken, an significant effort must be taken to insure that the survey is set up right. What comes to mind is that it needs to have the following features, at least, (1) user-friendly (2) efficient, so not time consuming and (3) asks the correct questions so we can extract the precisely the data we want.

Finally, I want to bring forward the point that although I'm using this term "diet" I mean it loosely. To our bodies the food which we put in is not food in the way we think of it. Instead it is a collection of chemicals. At the level of our disorder, we're concerned about the vitamins, the minerals, the particular chemicals that are inflammatory or anti-inflammatory. One way I have been thinking about this problem is taking the "food" we eat and transforming that into a profile of of it's constituent chemicals. For example, we gather the food intake of a person on a daily or weekly basis and we create a nutrient-chemical profile map for that person, ie, that person consumed this quantity of vitamin A, vitamin E, vitamin D, calcium, omega 3, lycopene, gluten, alcohol, refined sugars. etc. This way, we can sort of probe the question: how does these different chemical profiles relate to manifestations of the disease (if they are related at all). Do you guys think it's viable to cast the question in this context?


Looking forward to more discussion! I like Abraham Lincoln's quote "Give me six hours to chop down a tree and I will spend the first four sharpening the axe." Preparation is vital.

Post Edited (tx213) : 6/6/2014 5:05:13 AM (GMT-6)