Crohn's Disease Forum » Your Story » Success Stories » Botanist's advices and thoughts on Crohn's

02-04-2018, 07:49 AM   #1
DeeDee :)
Join Date: Feb 2018
Botanist's advices and thoughts on Crohn's


Thought I'd share a few of my thoughts on Crohn's.
I've been diagnosed about a year and a half ago and am now on Infliximab. I had to agree to it because it was the only thing left so I could try to stop the symptoms for at least a while and think about what the hell just happened. Now, I think I got the general idea of what this all is.

In the hospital they were kind, but literally all of them treated this disease as an incurable thing that will last forever and we can't do a thing about it except taking meds. No mention of anything else. I was on my therapy just a few days ago, and I asked the doctor about getting off the medication sometime soon and he told me that the medication is forever, and that people don't usually get off it (or at least not forever) unless they become resistant or money problems appear).
I met a few people with Crohn's a few months ago. They all were more or less scared about it, didn't know much about what to do except take medicine (I don't blame them at all, neither did I or would I if I wasn't
accidentally a very interested biologist). They don't explain the disease to you properly so you have to find most things out for yourself. I found out, for instance, that medical marijuana (a.k.a. marijuana ) supresses TNFα. The same that the medications I take do, except they got a ton of potential terrible side effects. Interesting. And the cost of TNFα is enormous, while marijuana is illegal. Who doesn't see this connection?
I also found out a lot about the human microbiome and that the answer, actually, probably lies there. There are a lot of scientific papers about the microbiome and Crohn's disease, and why is it then that my doctors never talk about it? It's because they're mostly not opened to other perspectives, definitely not opened to things like Ayurveda, which heals Crohn's with nutrition.. On this forum right here, under Success stories, just see how many of these people cured the "incurable disease" with things like food.
Remember that food is what builds us, literally, and you have to understand what that really means. Search for everything about everything: I've read about food additives (probably the worst thing in the today's
industrialized world, and that goes for all food that is not home grown), I've read about the availability of nutrients in food (read about apsorption and antinutrients. that's especially important if you absorb less!), I've watched the documentary about the Iceman on VICE and am now thinking about exposing myself to cold and try that at some time in life when I'm not on medications... Be open to everything!

Now, I'm a biologist, botanist, and I really love nature and I think we all in our hearts do, but are very disconnected from it and that is really an obvious thing, especially for people living in cities. I also live in the city (don't want to, but I was born in it.. but will move soon ), and the main focus of everyone's lives is on society and the problems in it, which are infinite and generally unsolvable. The tv has become a modern temple, and you know this is no joke. You go out, gotta pay a lot of attention on how you look, what you do.. if not on a conscious level, then on the subconscious. I noticed it in myself, and then even more in others. The anxiety. The stress. The accumulation of it in our minds, somewhere. A lot of stuff you never really process. We have to start dealing with it. I also tried to go to a class of yoga. I loved it and stayed with yoga ever since. Even in the fist class, which was exhausting, the feeling afterwards that I got, of my mind having been free for the last hour and a half, just thinking of how to balance or do something, was really exciting. There is music playing and it feels so chill, unlike any other excercise, because it is mainly a mental one. I have never felt a bad
bowel movement during yoga. Whether it's active ashtanga or passive yin yoga, try it, you could really benefit from it. I even had my own session of thoughts on "why are people competitive and how to stop being like that at all" while yoga.. I have a lot of interesting conversations with myself during yoga. There was a girl at yoga class, the only one that I knew, she was always mentioning her desk job (that she didn't really seem to love) after which she comes to yoga and that makes her day. And that is the wrong
way of thinking about problems, because it will not solve them. Just like if you have a migraine and you take a pill every day and it goes away, it doesn't mean you solved your problem. Unfortunately, it means that you are probably just denying what you really want with your life. No matter if it is the craziest stuff.

Why look at it like it's a horrible disease, and not a giant message to ourselves, a giant symptom on the body, a symptom for a generally bad condition from what we take into ourselves: the food that we eat, what
we breathe and if it's cigarette smoke (better be cannabis!! ) and what we take into our mind. Since we always think, the last one is the most important.
I am planning to stop taking medicine soon, after my doctors confirm that I'm in remission (which I feel I am), and from then, follow what my body and my mind wants. I've already stopped taking my Imuran pills slowly and I see it is still the same so - the less medicine, the better!

I'm currently doing:
-making juices with a juicer
-making water kefir (tibicos, there are exchange groups online)
-not eating wheat because today's wheat unfortunately has enormous amounts which stick to the intestines' walls
-not eating dairy, maybe occasional homemade cheese
-chewing stuff a lot, for the saliva to break down food partially so the stomach isn't upset
-oil pulling in the morning, google it, but be careful not to breathe the oil in (I don't know how people breathe it in it, I never did, but it could be potentially dangerous if breathing in is done repeatedly) - proven to reduce bad bacteria in the mouth, and possibly in the bloodstream too, after 10 minutes ; this is not necessary but I do it and I love it
-not drinking alcohol, even though I did before
-and I stopped smoking for good. It took a while, I gave myself time so it doesn't have to be hard. Today I found out that smoking reduces vitamin C levels. That actually got me to open an account and write all this. I wanted to post the link here and the forum doesn't allow so if someone wants, I can send a message!
-being open to every possibility.
02-04-2018, 02:30 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
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Be careful about going off all medications
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-13-2018, 05:11 AM   #3
erk's Avatar
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Location: Newcastle, United Kingdom

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Really enjoyed reading your post DeeDee

Food and the microbiome are so interesting to read about, it's startled me that while trying to get a diagnosis for my gut issues I was never given advice to monitor or make changes to my diet. It seems like such a shame but the only times I've taken seriously what I'm eating or how I'm looking after myself are when I become ill.

In any case good luck with your endeavours, let us know how it goes and as Ron says be careful as well
02-23-2018, 03:47 PM   #4
DeeDee :)
Join Date: Feb 2018
Great to hear someone is interested

For more knowledge about this, I suggest reading a book called The microbiome solution by Robynne Chutkan. Since I can't post links yet, you can google LibGen and open the first page and on it, the first link. There you can write the name of the book and download it by clicking "GET" (kinda looks like a fraud but isn't). It opens new universes for looking at this "disease" in a completely different way, and the story is told by a doctor who was, at the beggining of her carreer, a classic doctor who thought only pills can really make a difference, but after a lot of years she began to see that the real truth is really more on the opposite side of taking pills all your life.

Try reading the first few pages, and see if it intrigues you.

Also, when you type her name on youtube, the first video that comes could be as a prequel to the book.

p.s. [for any judgemental people out there: Read the book and see for yourself before judging, because she is a medical doctor, so unless you are too, there is no foundation for judging. And if you are, then there is even less.]

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