Doctor says I shouldn't worry about food... really?

Stress is the main factor in flares for me. The type of stress school can induce is so great personally, and so prevalent in other stories I read of UC, that I'm considering dropping out of school for good. I'm confident there are no drugs which will put me in remission if I am chronically stressed.

Diet is certainly a factor for many UC'ers, but not all. Plenty of people have success with SCD/PALEO,etc. Some people do fine on drugs. Some people only find relief through alternative treatments like fecal transplant, or smoking tobacco.

It is a complex and multifactorial disease. I recommend you try SCD with help of a dietician and in conjunction with food allergy testing. I had success with SCD then quit adhering for six months. Now I'm trying drugs and SCD. This time I'll stick with SCD. The full diet is pretty unrestricted. The intro and tediously adding new foods slowly is hard.

Also look for another Dr.

Post Edited (rafaeltoral) : 12/21/2017 1:33:16 AM (GMT-7)

Doctors have very little evidence from research to support diet modification as treatment for UC, so they don't suggest it, except for putting people on "low residue" diets temporarily. Low residue is generally low fiber which gives your GI system a rest.

If RX meds work, and it sounds like they have not yet for you, you'll have no reason to use diet mod.
Are you using a mesalamine enema nightly? That can really help your BM urgency and frequency. Much better than suppositories.

Diet modification has been the reason for my remission but it was very difficult getting there, trying each and every food to see what my gut did. Insoluble fiber is hated by my gut and that includes fiber pills (Citrucel was OK however).

Try removing/reducing fiber from your diet along with obvious triggers like caffeine and chocolate. See if things get better. But meanwhile get some mes. enemas and use them nightly. You are in charge of your health with your doctor as advisor. You can do diet on your own without GI support. Just don't get crazy with fasting or some idiot internet diet.

Good luck.

if your doc really believes UC can be cured, it's time to find a new doc -

diet changes most likely will not cure you, but finding the right foods to eat and not eat can be the difference between a relatively normal life and hell -

For me, it's more about quantity than about the actual diet. If I eat a lot, I go a lot. Some people have more luck with diet than others. Some can treat, and keep their condition maintained with specific diets. Most of those people are on other medication as well, but without keeping to a particular diet, they head in a downward spiral. I am not sure why diet didn't do anything for me, and why other's have luck almost exclusively with diet. In my opinion, if you were eating a specific diet and you were doing well, then you stopped it and you got worse, you should go back to eating that diet. When it really comes down to it, no one knows exactly what works for any individual. I've seen enough people here have luck with diet, that I know it helps some folks. I tried SCD diet with no response, but it seems like that is the most common diet. People usually have to work on modifying any diet for themselves.

Gasteroenteroligists use treatments that are approved for UC based on established medical evidence for treatments, and that predominately involves medications. There are liabilities and other issues when they prescribe things that are not approved for the treatment of UC and many are therefore reluctant.

At this time, diets have not undergone rigorous clinical study, large double-blind placebo controlled trials, and met all of the rigors of supporting their effectiveness for UC patients. So diets are not part of your typical gasteroenteroligist's treatment plan he/she will prescribe to you as a maintenance treatment for your UC. That doesn't mean diets do not work, rather it means we do not know if it works according to the same rigors by which medications are approved for the treatment of UC. There are a few scattered, small-scale diet and UC studies where people were aware of what they were eating (open-label as you'd call it in most clinical studies), just not as thorough of an investigation to get it approved.

Here on healingwell, some have reported having great results from diet modification (IBD-AID, SCD, Paleo, low residue, gluten-free, vegeterian/vegan, etc.). Some are ardent supporters of diet modification and say that's all that have worked for themselves, personally. Others, like myself, have tried diet modification and seen no result at all,some even have their UC symptoms get temporarily worse as a result. And that's UC in a nutshell, it could help but then again, it could do nothing at all for you, or it could make symptoms temporarily worse. All you can do is try and see, as it is your results that matter most; not mine or anyone elses. It's good to have options and things to try from a variety of areas. Qualifies as interesting, or something an individual could try, but not a wide-scale recommendation by every gasteroenterolgist across the globe (as it needs more study, research, money, proof, etc.).

Could food be impacting your UC symptoms, it's possible. You could have a food-intolerance (to gluten, to diary, to high-fiber, to specific foods that vary person-to-person). There could be a simple
input-output thing, meaning the more you eat the worse your UC symptoms are.

The topic of food is complex, and its effect on UC is largely mediated by the composition of the gut microbes. Food sensitivities of the host seem to matter much less unless they rise to the level of an intolerance/allergy. There are foods know to be anti-inflammatroy and these substances are available in certain foods, and as refined supplements. Especially as refined supplements some have side effects and/or interfere with some medications. Food is medicine and medicine is food. It is complex.

There is also 3 questions: food and the onset of UC, food and the symptoms of UC, food and the prognosis/management of UC.

This all varies by the particular events that triggered UC, and by the extend of genetic vulnerability the individual has to UC.

It also mus be distinguished "food" related to managing UC symptoms versus specific nutritional components and supplements intended to manage or moderate the conditions of UC. FOr example probiotics are not food but can manage symptoms. Also butyrate fermentation is indirectly about what food/supplements are eaten and more directly concerned with healing of the mucosa.

It is complex.

Some of the questions you are asking are not correct. Some of the distinctions you make between food and medicine are not correct.

A good overview is in these two 2017 reviews

Dolan, K. T. and E. B. Chang (2017). "Diet, gut microbes, and the pathogenesis of inflammatory bowel diseases." Molecular Nutrition & Food Research 61(1).

The rising incidence of inflammatory bowel diseases in recent decades has notably paralleled changing lifestyle habits in Western nations, which are now making their way into more traditional societies. Diet plays a key role in IBD pathogenesis, and there is a growing appreciation that the interaction between diet and microbes in a susceptible person contributes significantly to the onset of disease. In this review, we examine what is known about dietary and microbial factors that promote IBD. We summarize recent findings regarding the effects of diet in IBD epidemiology from prospective population cohort studies, as well as new insights into IBD-associated dysbiosis. Microbial metabolism of dietary components can influence the epithelial barrier and the mucosal immune system, and understanding how these interactions generate or suppress inflammation will be a significant focus of IBD research. Our knowledge of dietary and microbial risk factors for IBD provides important considerations for developing therapeutic approaches through dietary modification or re-shaping the microbiota. We conclude by calling for increased sophistication in designing studies on the role of diet and microbes in IBD pathogenesis and disease resolution in order to accelerate progress in response to the growing challenge posed by these complex disorders.

Rapozo, D. C. M., et al. (2017). "Diet and microbiota in inflammatory bowel disease: The gut in disharmony." World Journal of Gastroenterology 23(12): 2124-2140.

Bacterial colonization of the gut shapes both the local and the systemic immune response and is implicated in the modulation of immunity in both healthy and disease states. Recently, quantitative and qualitative changes in the composition of the gut microbiota have been detected in Crohn's disease and ulcerative colitis, reinforcing the hypothesis of dysbiosis as a relevant mechanism underlying inflammatory bowel disease (IBD) pathogenesis. Humans and microbes have coexisted and co-evolved for a long time in a mutually beneficial symbiotic association essential for maintaining homeostasis. However, the microbiome is dynamic, changing with age and in response to environmental modifications. Among such environmental factors, food and alimentary habits, progressively altered in modern societies, appear to be critical modulators of the microbiota, contributing to or co-participating in dysbiosis. In addition, food constituents such as micronutrients are important regulators of mucosal immunity, with direct or indirect effects on the gut microbiota. Moreover, food constituents have recently been shown to modulate epigenetic mechanisms, which can result in increased risk for the development and progression of IBD. Therefore, it is likely that a better understanding of the role of different food components in intestinal homeostasis and the resident microbiota will be essential for unravelling the complex molecular basis of the epigenetic, genetic and environment interactions underlying IBD pathogenesis as well as for offering dietary interventions with minimal side effects.

Oligodar said...
According to the latest research there is no solid evidence that UC can be treated by diet. On the other hand some people have had success with diet modification. I would continue in your current treatment Humira + 5ASA + low residuum diet. After several months you can try SCD, AID or diet diary. But do not expect too much from diet modifications.

Good luck

Actually there is one recent study which shows SCD alone can induce remission. There are a handful of other documented cases of diet alone inducing remission.
http://pulse.seattlechildrens.org/novel-diet-therapy-helps-children-with-crohns-disease-and-ulcerative-colitis-reach-remission/

Not a large study, but promising none the less. Thirty years ago if you told a gastroenterologist that a bacteria was responsible for the majority of stomach ulcers they would have laughed in your face. IBD is a complex disease with multiple causative factors. Genetics, stress/environment, diet, and bacteria all play a part.

There are some very intelligent and ahead of the curve gastroenterologists out there, they are just few and far between. These are people exploring diet modification, fecal transplant, etc. Good luck getting an appointment with one of them, however.

Thank you rafaeltoral for the study. Still I believe it is no solid evidence that this diet works. It is a small, prospective study. Placebo effect plays big role in patients with UC. But It is definitely worth to try it. Just do not bet everything on diet ...Have backup plan (medications ...)

@Oligodar, you stated current research states UC cannot be treated with diet. Can you provide some sources? I have found the research lacking.

Uniform Charlie said...
@Oligodar, you stated current research states UC cannot be treated with diet. Can you provide some sources? I have found the research lacking.

IF you look at nutrition and management of gut microbes, the articles I cited review a number of studies for a role of micro-nutrients in pathogenesis and prognosis of IBD. It is just not exactly the same thing as diet, which is more about omitting or grouping foods.

Plenty of interesting evidence for micronutrients

Next question you can add is why it follows a particular pattern of starting at the lowest part of the rectum, not anus, and continues upward, yet heals downward.

While microbiomes are accepted, the pattern is specific .....and seem to not be dependent on microbiomes.

q

These are good questions - especially patterns. I note "role" of gut microbes, but do not say "cause" or what come 1st - or even that it is a back and forth relationship that resettles on its balance point, but the regulator breaks and it cannot rebalance.

THe recent article I recently cited makes this exact cause-or-consequence point:

Dysbiosis in intestinal inflammation: Cause or consequence
Year: 2016
Journal: International Journal of Medical Microbiology
Volume: 306 Issue: 5 Pages: 302-309
Abstract:
The intestinal microbiota encompasses hundreds of bacterial species that constitute a relatively stable ecosystem. Alteration in the microbiota composition may arise from infections, immune defects, metabolic alterations, diet or antibiotic treatment. Dysbiosis is considered as an alteration in microbiota community structure and/or function, capable of causing/driving a detrimental distortion of microbe host homeostasis. A variety of pathologies are associated with changes in the community structure and function of the gut microbiota, suggesting a link between dysbiosis and disease etiology. With an emphasis in this review on inflammatory bowel diseases (IBD), the non-trivial question is whether dysbiosis is the cause or consequence of inflammation. It is important to understand whether changes in microbial ecosystems are causally linked to the pathology and to what extend disease risk is predicable based on characteristic changes in community structure and/or function. Local changes in tissue integrity associated with focal areas of inflammation may result in the selection of a dysbiotic bacterial community associated with the propagation of a disease phenotype. This review outlines the role of dysbiosis in intestinal inflammation with particular focus on IBD-relevant gnotobiotic mouse models, the factors implicated in the development of dysbiosis and the means available to investigate dysbiosis in the context of human diseases.


--- But this was not so much a discussion about the gut microbes, and certainly not saying it was primary or causal, rather it was a discussion about diet.

My most recent point was to carefully consider the difference between the words "food", "diet" and "nutrition" - especially when saying there is/is-not scientific evidence.