UC -- alternative outlook, living without meds

Since the thread where I wanted to post this information was closed I will copy-paste my text here and start a new thread.

I was diagnosed with UC nov 2015 (5 biopsies taken with c-scope). I haven't taken any meds yet and hope that I'll be able to live without them. So far I've managed the UC with the diet and some supplements. It haven't been easy, I've literally spent few hundreds of hours on nutrition/biochemistry/GI system research, have failed miserably a few times but always tried to keep positive attitude and learning from mistakes. For the most of the last couple of months I've lived without any problems as long as I was following my own UC diet (which is based on facts provided below).

From what I have researched so far I've come to conclusion that it is very unlikely that UC is an "idiopathic" disease. UC is most probably a logical result of a sum of multitude of factors where the biggest role is played by microbiota (which is part of the immune system itself). Also one of the biggest misconceptions I think is that it is believed that UC sufferers have "too strong" immune system. In my opinion the exactly opposite is true. I'll try to explain but first here are some facts -- you will soon understand what I'm talking about:

Fact #1. UC always starts in distal colon and advances proximally. This also coincidentally exactly conforms to butyrate availability in the colon (the further down distally the less butyrate available). Butyrate has multiple functions in the column. Firstly it downregulates excessive inflammation and carcinogenesis and decreases oxidative stress. Secondly butyrate (similarly to L-glutamine) effectively remove ammonia. And thirdly butyrate also decreases the relative abundance of various pathogens including Helicobacter, Campylobacter and others.

Fact #2. From all the uBiome tests I've seen so far I haven't seen any UC sufferer with "normal" ("average") microbiota distribution -- most often pathogenic bacteria -- proteobacteria or actinobacteria -- are severely overgrown. There are also some cases where single bacterial group -- firmicutes -- have reached complete dominance. This is a very important fact because it already shows us that there are something physically wrong with the gut itself not just some weird immune response.

Fact #3. To make it even more interesting -- proteobacteria group includes many species of bacteria that thrives on sulfur and nitrogen compounds -- these are SRBs and nitrogen fixers. Animal protein (meat and milk products) are high in methionine and cysteine -- two sulphur containing amino acids and largest dietary sulfur sources in colon. Also undigested animal protein is high in nitrogen. Butyrate is potent ammonia "detoxifier" (here is why distal colon have constant butyrate deficiency). Actinobacteria -- mostly bacterial species that live on skin, soil and freshwater but also some beneficial bacterial strains that are normal residents of gut microbiota. But more interestingly also includes a species of bacteria well known by many of UC sufferers -- Mycobacterium avium spp. tubercolosis (or MAP). MAP can be found in unpasteurized milk products since it feeds on lactose.

Fact #4. UC is always connected with prolonged stress. As it is well known stress inhibits the production of digestive enzymes as the parasympathetic nervous system is "slowed down". Also blood supply to GI tract is greatly reduced and oxygen availability is even more disrupted due to hyperventilation. This way the normal digestive process is almost blocked. When organism experiences prolonged stress (days, weeks or months) it means that undigested food (due to lack of enzymes) is traveling down to the column where it will be fermented by bacteria or yeast. Due to reduced blood flow (reduced oxygen availability) the immune response is inadequately weak.

It's late and I'll leave the conclusions and suggestions for natural treatment for tomorrow but I think you can see clearly that UC is not automatic and idiopathic at all (at least from my perspective). It's logical, functional and systemic and needs adequate approach.

i don't have the time or the mental capacity right now to read every word, but if you are saying that for most people, UC doesn't just appear for no reason, then i agree completely -

When it is intimated that IBD is more of a lifestyle disease, it is no less distracting than when it was claimed to be a psychological disorder.

If modifying diet, avoiding stress, and adding a few supplements were indeed sufficient, that would be wonderful. I wish you every success.

Inflammation in the bowel causes the greatest alteration to the bacterial inhabitants.

'Fact' #4 is a load of tosh. Show me a person who has never been through a prolonged period of stress in their life, because I can't think of a single one I know. This just all boils down to a pseudo-scientific argument that UC is a 'lifestyle' disease, but if it was that simple almost everyone would have it.

Globetrotter said...
NiceCupOfTea, I'm here dealing with data and information which I have gathered throughout my experience with UC and I'm presenting this information for everyone here who wants to use it for their own good. If you don't like what I write or you don't think like that you can feel free to skip this thread on continue somewhere else, but please do not attack me with this bs. I would suggest everyone to try to learn to listen before screaming. That way you will learn more and will find out life is much easier. We already know that you will not find two persons with exact similar symptoms. In this thread I am talking about the "average" sufferer from point of view of MY EXPERIENCE which says that on "average" 9 of 10 patients are impacted by stress and their UC is exacerbated if stress is present.

So you have gathered data from a sample size of n = 1 and from that have extrapolated that 9 out of 10 people's UC is caused by stress? Very scientific.

Globetrotter said...
That is your assumption I never said that and my sample size is far more larger than n=1. I will not reply to you anymore because I see that the only purpose of your posts are to discredit me. Again I'm not claiming any miracle cure for UC. I'm dealing with my experience and I'm quite sure that it can help others. If you don't like this please leave this thread alone and allow me to finish.

I've got no problems with people talking about their personal experiences and what worked for them. I do get irritated when they come out with sweeping theories of what causes UC. If you have found something which has helped you, good for you (I mean that sincerely, not sarcastically), but please don't assume that's the same thing as having cracked UC, because so far nobody in the world has done that. I do think in some cases you have been conflating cause and effect: for example, it is more likely that bowel inflammation has caused the disordered gut flora than vice versa. It really is a horrendously complicated subject.

Globetrotter said...
Not sure if it's worth to continue with the other rules at all... seems like actually no one cares about possibility to influence the disease without meds

Please continue. You have to learn to ignore some of the posts that are rude and condescending.

Thanks for sharing, you've certainly put a lot of thought into this and mention terms and concepts that are debated here on occasion. Many try to wrap their head around uc it's causes, there's a lot of stuff that makes a whole lot of sense to us, personally, when digging through research papers, studies etc. The real challenge is finding something that works "in practice" and "applies to everyone".

I think your use of the word "fact" is causing some flack. I think a different and less absolute word would've gotten a lot less of it, like "hypothesis" or "opinion".

Certainly share away. Nothing is settled in scientific research, there's always naysayers and criticism. I know your post isn't that but certainly it attracts the same.

Globetrotter said...
Not sure if it's worth to continue with the other rules at all... seems like actually no one cares about possibility to influence the disease without meds

Dear Globetrotter please continue to share your experiences and ideas. My son is suffering from UC and I truly care about your experiences.

Before UC we strugled with ITP. I think modern medicine has limits in this type of illnesses and treatments are not treatments actually.

We also have similar experiences especially about ITP. Aftersome self experiments we realized that Dairy products are not good for our child. Now ITP all gone but UC came.

Post Edited (turcolive) : 9/6/2016 8:53:40 AM (GMT-6)

It's nice of you to share your findings, I agree with iPoop, the reason you will get kick back is because the way you're stating it all as if it is "fact" or "end all be all". It's simply your experience, your individual circumstance, and that's all it's based on.

Many of us have been dealing with UC for LONG periods of time and have tried MANY things, put in WAY more than 100s of hours working on trying to "cure" or even "treat" ourselves, coupled with taking advice from medical professionals when things were INTOLERABLE. Of course I tried to get myself healthy using apple cider vinegar and other similar techniques over the years. Bitters, slippery elm, nopal, SCD, grain-free, gluten free, high doses of probiotics, fermenting tea & veggies, FASTING, meditation, expensive supplements out the wazoo...

I resisted meds for SO long. Eventually, I was anemic and about to collapse. I restricted the heck out of my diet, even went to the extent of not eating anything at all... no improvement. I was under no stress. I had everything taken care of financially, had a comfortable place to live, didn't have a job. Sat home and relaxed. Got out when I could, but it was very minimally because of my condition ruling my life. Even a short trip to the grocery store was riddled with multiple dashes to the dirty public toilet.

I am very happy you're doing well and I hope you continue to - but I can tell you with 100% confidence that nothing you've stated would have done anything for me in particular. Nothing your saying is really new or ground-breaking here either. it's all stuff we see from a new user on the regular. Thanks for posting & please continue to provide information. That said, please state them as opinion (which they are) not as fact.

Interesting outlook. I think 1 problem is the improper grammar as well as spelling mistakes throughout your posts that seem to "discredit" you. Are you from a different country? Just curious.

Secondly, I'd say everything is influenced by stress, not just UC. It seems that every medical problem gets exaggerated by stress and even seems to start with stress.

Lastly, the problem I have with your 9/10 statement is that you say "on average, 9/10". That in itself is a contradicting statement. That's like saying 55% of the time it rains 90% of the time in Europe. It just doesn't make sense.

IamCurious said...
There is nothing wrong with using meds to manage your disease. God knows that I am med-free mostly thru blind, stupid luck. I am allergic to mesalamines, but I was prescribed antibiotics for a painful abscess; and those abx serendipitously ended my flares. I fully understand why meds are necessary for most people. For me remaining in flarestown would have been unacceptable so who knows what meds I would have been otherwise forced to take if the ABX couldn’t rescue me from those miserable flares.

In the previous thread that was locked I wasn’t criticizing anyone for taking meds. I was only trying to defend someone who was using a non-prescription supplement to manage her disease. It was not fair for others to say she was clinging to “self important opinions”. My point was to say that there is just as much research validating the efficacy of her non-prescription curcumin as there is for conventional meds.

It 100% wasn't your fault that I locked it. It may have looked that way since you were the last to post. I locked it based on all of the posts overall. Sorry if it seemed directed at you - it wasn't. There was a general overarching tone of disrespect and a lot of unsupportive argument long before you participated. You were being fair and level-headed.

I'm not having a go at you personally, but I don't see how that diet is an improvement on taking meds. Also, have you had any recent tests (e.g. a colonoscopy) to see if you are in remission?