Collective experience of MC patients everywhere?

[Chrisdat]

The future of all our collective experience mapped and ranked?

Take a look at this?

https://crohnology.com be sure and click on diet and supplements. MC is a subset of Chrohns and Colitis, with different meds, diet, and supplement experience. Love to see MC version of this. Any genius website people here?

My dream if I could get all the knowledge and experience here, made easily assecible. I've learned so much from this group. But it would be so great to see all the knowledge ranked.

-Chris

[nerdhume]

That is a great idea. It would be a lot of work. It would be great to see the exact percentages of treatments that work, diet changes, symptoms.

[tex]

If you do that on an open basis (open to the public), you are going to get a heavily-weighted bias in favor of medications. That's counterproductive.

A couple of years ago, I declined an offer to merge this board with a prominent Crohn's/colitis discussion board for that very reason. Our success rates with diet changes would have been smothered by a drug-treatment-oriented, anti-diet-change biased environment.

For example, do you see "Gluten-Free" listed as a "Top Diets" option on that website? They are totally lost, IMO, and you will find that to be the prevailing problem anytime you open your database to public entries, because the average citizen of this country considers it his or her right to fix any health problem by taking a pill (regardless of the cost, of the side effects). Thankfully, our database is hidden from the public.

Chris, I understand what you are suggesting, but accomplishing that would be a tremendous amount of work, since members come and go here on a regular basis. The reason why the site you referenced works, is because Chron's/colitis is a widely publicized disease, so plenty of candidates are available, and mostly because the site itself doesn't have to enter any data — the public does all the work. But in view of the fact that GF is not even considered as an important diet option, just what is the value of all that work?

That said, you have planted the seeds of curiosity, and I own a domain or 2 where that project would be practical to pursue. As long as we could keep it separate from this discussion and support board (so as not to discourage anyone from using diet changes to get their health back), I feel it would be an interesting project. Anyone have any interest in helping with this to set up such a project?

Tex

[nerdhume]

Tex, I have to agree about the 'other' boards not even considering diet. I posted a link to this MC board on the UC board explaining the diet information here is amazing and I thought the link would be helpful to anyone that wanted to try controlling this with diet. Right away I got responses about how diet would never work for UC....MC is not considered very serious because it doesn't lead to colon cancer like UC.
I had to call BS on that whole line of reasoning. As per another post you had made I think anyone with common sense at all would realize constant inflammation is going to raise cancer risk... and so does lots of 'pills' IMO. The more natural we can be the better. Keeping the inflammation down with a restricted diet has got to lower the risk.

About the original discussion (before I got on my soapbox). Could we have something similar open just to board members?

[tex]

About the original discussion (before I got on my soapbox). Could we have something similar open just to board members?

Originally we set out to do that by means of polls. But even though the polls required only a single simple selection (each), participation was mediocre, at best. Some polls garnered a significant number of responses, but others did not. The question here (in view of limited poll popularity) is whether members would bother to fill out a rather extensive form, that's detailed enough to be thorough. We can't simply take the information from the database, because the database contains selected (volunteered) information, with no coordination at all. We know x about this member, and y about another member, but not both x and y for both members. IOW, we have very limited, fragmented data.

In order to obtain meaningful data, that can be analyzed by statistical methods, we would have to ask the same questions of everyone. Since statistics show that participation in such surveys usually amounts to only a small percentage of the potential candidates, with such a limited potential to begin with, the odds of obtaining statistically meaningful results appear to be rather low, unfortunately. We have many members, but the number who are actively posting at any given time, is relatively low, as a rule.

Regarding the popularity of diet changes for treating health issues, I'm just guessing at the statistics here obviously, but I have a hunch that probably at least 90 % of the people who first find our site, enthusiastically read a few posts, frown, shake their heads, and move on. Because there's no way they would consider such drastic diet changes when their doctor has told them that they can either control their symptoms by taking a pill, or by simply waiting for the symptoms to resolve on their own (citing flawed research articles that show that MC resolves without intervention after approximately 3 years. ).

Tex

[tex]

Incidentally, FWIW, for an example of a member here who has UC (not MC), and who controls his symptoms by diet alone, please read NJ's posts in the threads at the links below:

I was diagnosed with Ulcerative Colitis (Pan-Colitis) at the age of 19.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10248

Like you, I'm 26. I was diagnosed w/ Ulcerative Colitis at the age of 19. It's not the same as Microscopic Colitis, but I can control my colitis 100% through a diet that shares a lot of similarities w/ others on this board.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11760

Tex

[nerdhume]

Tex,

Regarding the popularity of diet changes for treating health issues, I'm just guessing at the statistics here obviously, but I have a hunch that probably at least 90 % of the people who first find our site, enthusiastically read a few posts, frown, shake their heads, and move on. Because there's no way they would consider such drastic diet changes when their doctor has told them that they can either control their symptoms by taking a pill, or by simply waiting for the symptoms to resolve on their own (citing flawed research articles that show that MC resolves without intervention after approximately 3 years).

IMO this way of thinking parallels the obese that refuse to diet, the smokers that refuse to quit. Drs don't bring up the subject of diet, my GI didn't even mention it until I asked him specifically. They are, after all, in business to make money. They don't want to make the patient mad enough to leave. And it's hard for us to handle the truth sometimes.
I must admit the first time I visited here I had my doubts. Right up until I got the tests results from enterolab and went GF, DF, EF, SF. Within a couple of days I could tell a big difference. I had been on the Uceris for a while by then, and that didn't make me feel as good as the diet. I think the pill was a good tool to let me take my life back while I worked out the diet, but I wouldn't want to be on it permanently.

[Gabes-Apg]

IMO this way of thinking parallels the obese that refuse to diet, the smokers that refuse to quit. Drs don't bring up the subject of diet, my GI didn't even mention it until I asked him specifically. They are, after all, in business to make money. They don't want to make the patient mad enough to leave. And it's hard for us to handle the truth sometimes.

my belief, it is not just the diet that is part of the 'success' with living with MC, it is your thought attitude and how you embrace health and wellness.
there is alot of sub conscious beliefs, fears and emotional traumas amongst other things that make obese reliant on emotional eating, smokers that struggle to quit. Until you befriend your shadow, understand your triggers, most will struggle to overcome those habits. Majority of people can not do this on their own.

Add into the mix, doctors and the system they are governed/controlled by, does not encourage pro-active non medication, approach to wellness.

Unless someone is strong enough, determined enough, patient enough, focussed enough to make changes, research and make informed decisions about their health; that their current situation allows them the time and energy to focus on themselves, that they have the support of family, and/or have the finances to incorporate what is required.
with Chronic conditions, remission and wellness are delicate fragile states, and take constant discipline.

[tex]

Add into the mix, doctors and the system they are governed/controlled by, does not encourage pro-active non medication, approach to wellness.

Right on, and of course most people are afraid to go against the advice of their doctors, even when following that advice provides little or no relief.

Tex

[nerdhume]

Tex,

of course most people are afraid to go against the advice of their doctors, even when following that advice provides little or no relief.

The PCP I had when all this started just kept giving me more pain meds & PPIs. When I told him the side effects were worse than the pain and that OTC pain relievers helped more he said I couldn't take OTC because they all caused heart attacks. That was when I changed PCP.

IMO many drs get annoyed if you don't do what they say, once they are annoyed they will not listen to you or help you any more. My current drs will listen and give me a choice of options.

Gabes,
Obesity, smoking, heavy drinking, bulimia, anorexia, drug abuse, etc. are all self destructive behavior. I have dealt with friends that have these issues over the years. They can't quit until they get to the bottom and figure out why they are addicted. I think the same reasons apply to PP that can't stick to a diet plan to heal....somewhere down deep they don't want to.
Several decades and a couple of DHs ago.... I suffered from low self esteem and did a lot of smoking and drinking. I quit smoking and now I drink a glass of wine to relax.

[JFR]

I participated for a while in a study of people who had lost a significant amount of weight successfully and then kept it off. I lost 85 pounds following a low carb high fat moderate protein paleo diet and had no trouble keeping the weight off. It's been over ten years now. I gave up filling out their lengthy questionnaires when it became apparent that the study was just going to be an endorsement of the low fat whole grain diet that is recommended everywhere, the diet that doesn't work for most people. My data was simply lost in the system because most people who lose weight follow the recommended guidelines so the vast majority of people in this study followed the recommended guidelines, not because this was the best way to lose weight and keep it off but because that is what they are told to do. In my opinion this study proved nothing except that people tend to do what their doctors say and sometimes it works. Since only successful dieters were in the study, the failure rate of the approach was not recorded. Even the questionnaire was clearly not developed with my dietary choices in mind although I cannot now remember exactly how the questionnaire didn't fit me, only that it didn't, making it hard to fill out.

Jean

[nerdhume]

Also with drs I try to keep in mind that they really only need to treat a small percentage of conditions. IMO about 80% of things will get better whether they treat it or not. Maybe 5% of things are going to be fatal no matter what they do.
This is the first time in my life I have felt like I was part of the small percentage that really needs treatment.

[Polly]

Interesting thread.

I have always thought it would be fun to see the overall personality profile of the members here, especially those who are able to embrace dietary changes. I suspect that we would have certain similarities.......like an independent streak; the belief that we CAN take charge of our lives (even if it means going against the status quo thinking); a persistent nature with a strong desire to get to the bottom (no pun intended!) of things; seeing a challenge as positive and doable, rather than negative, etc.

Of course our innate personality traits may have been partly responsible for our getting MC in the first place - hahaha. We seem to be deeply kind and caring people (if anyone doubts this, just look at the angry/abrasive personalities on some of the other websites). We probably internalize a lot of our stress - more to our gut than to the heart as most others do. I know I have always felt stress in my gut - within moments of something stressful, I have always needed to poop - even long before MC. I joke that if I were to experience some kind of disaster, everyone else would quickly evacuate to be safe, while the only evacuating I would be doing would be glued to the toilet with D. LOL.

I remember reading Dr. Bernie Seigels' (sp) books some time ago and being struck by his observations. He is an oncology surgeon, so all of his patients have cancer. He observed that there were basically 3 different reactions his patients had when they were given the diagnosis of potentially terminal cancer. About 10 % immediately just gave up - made comments like "it's God's will so there is nothing I can do", "I'm ready to go", etc. Another 10% were just the opposite - became proactive and said they would leave no stone unturned to beat the cancer. This group took advantage of traditional medicine but also embraced alternative therapies that they decided would help. The remaining 80% were somewhere in the middle. And you guessed it! Those most likely to die were in the first group, and those most likely to survive were in the second group.

Love,

Polly

[JFR]

Also with drs I try to keep in mind that they really only need to treat a small percentage of conditions. IMO about 80% of things will get better whether they treat it or not. Maybe 5% of things are going to be fatal no matter what they do.
This is the first time in my life I have felt like I was part of the small percentage that really needs treatment.

My father was a doctor. He would typically tell me, when I asked him what to do about something, that I would either get better or I would get worse, with or without treatment, that very few people just stay the same, but he was more honest than most.

Jean

[nerdhume]

Polly,
Some other types may lurk here for a while but IMO only those of us that are still here are obviously stubborn enough to think we can cure ourselves, and willing to do what it takes to get our lives back.
You may be right, that attitude may be what caused the MC in the first place

Jean,
Nothing in life ever stays the same, everything is always getting better or worse. My house was getting cleaner earlier, now it's probably getting dirtier while I am here.
The body can heal itself of most things given time to rest and proper nourishment. A prescription comes in handy if it will speed up the healing or help with the symptoms while healing.