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

02-04-2018, 07:49 AM   #1
DeeDee :)
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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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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
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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 :)
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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.]
06-04-2018, 02:33 PM   #5
DeeDee :)
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I'm just checking in after an MR and a colonoscopy. I am in complete remission, my doctor was even happy. I am just becoming more and more sure about my decisions.

You have to be kind and good to yourself to end this disease, caring about what you eat in a way that you always try to eliminate food you know is bad (ANYTHING processed! Remove everything, one by one item!) and finding healthy solutions, alternatives. In time, with eating healthier meals your body will adapt to the new flavours, and good ol' candy will finally taste too sweet and you will rather eat a healthy cake, for instance.

Still I think finding a way to reduce, and in time eliminate as much bad feelings as you can from your life helps the most. That especially includes the things you may not recognize are mentally hurting you, like thinking bad of yourself, and feeling sorry for yourself instead of trying to maintain a positive attitude towards life and dealing with your disease. Compared to many, many, MANY people, millions of people living in horrible life conditions, most of us have the opportunity to change our lives, when you see you f*cked something up, like your intestines. Learn more about the human body, not from what other people say but from documentaries and books, and know what causes your disease and how you can control it. There are many people who managed their Crohns, and many other way worse diseases. They are not just accidentally lucky, that's a lazy man's excuse. Of course, in life you can't control everything that happens, but the first step towards healing yourself from anything is learning about it and trying different things until something works.

I tried nutritionists, they didn't help me much because they told me too generally what to avoid and to check myself for vitamin deficiencies. In the meantime I was (and am still) getting rid of any habit (eating, smoking, whatever) that I felt messed with my digestion. When an ayurvedic doctor came to my town two months ago, I went to see him and he was very helpful and positive. Just the positivity got me to think everything will be okay. Except an individual ayurvedic consulting, as a general thing for everything he recommended drinking a cup of Lassi (that is 1/4 yoghurt+3/4 water+indian spices, such as cardamom) before eating, and after eating, to drink ginger tea (mixed ginger, dried basil and curcuma). The Lassi yogurt helps prepare your digestive system for the food, and is easy on the stomach because it's diluted, and ginger tea is the best thing for getting food to move nicely through your intestines. Also he told me to continue my yoga pursuit, and to do pranayama exercises in the morning and evening. Also sleeping 8 hours and not 5 is very important for your brain, and your intestines, to rest.

I will repeat, try to learn about the digestive system. How it works, how it's connected to the nervous system. That is an interesting connection. When you learn about it, you will feel less freaked out about everything that happens.
06-22-2018, 01:57 PM   #6
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Location: Zion, Illinois
I am so happy that you have found what works for you. And thank you for the reading recommendation. I am always looking for new information and healthy natural solutions to a healthier living. Some thinking is digestive health is the key to overall health which I think is very true.
I am living testimony of natural alternatives. I had a massive heart attack in 2016. I had 1 artery fully blocked and got a stent. Another artery was 60% blocked. The whole back of my heart was not working good. Dr said we would monitor my heart and put a stent in when other arteries got worse. I asked him what I could do in the meantime. He said there was nothing I could do. Well we all know that's not true. I researched and started my own natural remedies. I looked for things that I could commit to and 6 months later my blockages were gone. My heart was working 95% and I was released from being a heart patient.
I am now having a severe attack with my Crohn's. My whole colon is affected. Ulcerate Colitis is quiet right now. I am back on steroids and doctor wants to start me on Remicade. I can't function right now without the steroids but I just have such a hard time thinking of putting additional poisons in my body so I am back into research mode so reading your posting comes at a good time. I was already on Humira and I really feel it contributed to my heart attack as I had all the heart tests 2 years previously and my heart was in perfect shape.
Again thanks for sharing your thoughts! Greatly appreciated.

Last edited by JaimeSports; 06-22-2018 at 02:12 PM.
06-25-2018, 11:02 AM   #7
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I'm glad your heart is doing better, that's great! Welcome to the forum, Jamie.
06-26-2018, 10:24 PM   #8
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Location: Wexford, Pennsylvania
DeeDee, I appreciate your candid writing and sharing of your experience. I have very similar experiences in that when I first started going to doctors about Crohn's, I was not taught anything about diet and nutrition. It is absolutely startling, just as someone else mentioned, that for a disease concerning the digestive tract there is so little guidance on food and such a large focus on medication.

I remember my Crohn's doctor prescribing me a powder to sprinkle on my food and telling me that if I do this, I can eat all the greasy cheeseburgers I want. That didn't sit right with me, and I did not try the powder. Thankfully I did exactly what you are suggesting, I read as much as I could, Googled all kinds of different things, read books and research articles. I think it's just doing your due diligence to educate yourself when you have been diagnosed with something.

I can appreciate that a lot of other people suffering with Crohn's have symptoms worse than mine or have been dealing with it their whole lives, so medications have been a necessity for some to rely on. However, I hope that more and more people don't give up there and that they feel inspired to think a little differently, do the research, and take control of their lives so they can feel even more relief.
Ren, LPC
Crohn's Disease, diagnosed 2006
Small Bowel Resection 2008
Previous Meds: Asacol, Entocort, Imuran
Curent Meds: appropriate nutrition!

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