Crohn's Disease Forum » Your Story » Success for multiple years: How I managed to get control of Crohn’s Disease


12-19-2017, 11:29 PM   #1
Jabo
 
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Success for multiple years: How I managed to get control of Crohn’s Disease

Warning: My lifestyle is burdensome, and the diet is not easy. To live healthily is a pain, but not as big of a pain as the burden of as being sick.

A) Drugs
1. Humira. I tried lots of drugs from the doctor and other than steroids this is the only thing that helped in a major way. Alone, it doesn’t work though; I need a lot more. There are other biologics that work for people such as Remicade. These seem to be effective.

2. Wellbutrin. This is an anti-depressant and off-label treatment for Crohn’s. It works somewhat for my chronic depression. Not sure if it helps the Crohn’s or not, but it doesn’t hurt.

3. Lots of supplements. I tried well more than 100 supplements and spent over $10,000 trying anything and everything. I have found some that I like.

A) Now Foods, Saccharomyces Bouillardi. The one probiotic (in pill form) I can say helped.
B) Thorne Research, Formula SF722, 250 Gelcap. This kills yeast infections which is probably a given, even though everyone thinks they don’t have it.
C) Digestive Enzymes. The more expensive, the better. I like Now’s premium products.
D) Optional: A good vitamin D3 (I like Thorne). Zinc picolinate (Thorne or Now). Betaine HCL (Now).

B) Diet
1) The elimination diet is necessary and sucks. You start off with two or three of the foods that are the safest. I suggest organic free-range chicken, carrots, and organic homemade sauerkraut. Though the last one might be too powerful and make you sick at first, it is ultimately good. So in a worst case just chicken and carrots.

2) NO SEASONINGS EVER. Say goodbye to delicious food. They only safe seasonings are salt, organic turmeric, organic cinnamon, and organic vinegar. Later, if better, maybe organic black pepper in limiting amounts or some organic curry powders.

3) Only a very high quality organic olive oil and organic coconut oil. If you have to choose between one or the other and don’t have money, get the cheaper coconut oil. Later on if things are well, then grass fed organic ghee. (note: all these products should only be purchased in glass jars/bottles.)

4) Organic fruits and vegetables. The cabbage family is a safer bet. During the elimination diet give up all nightshades. And especially don’t eat anything green outside of the cabbage family that isn’t organic. Later some non-organic fruits and veggies can be added. Review the "clean 15 and dirty dozen" and cross-reference to the auto-immune paleo diet for what fruits and veggies are okay. Do NOT get anything that is in a metal can or plastic container. Anything in the pantry in a can or plastic, just throw away. All fruits and veggies should be bought fresh, and if you want then you freeze at home.

5) Fresh organic meats. Organic free range chicken, ocean caught fish, grass-fed beef. These are expensive but not as expensive as hospital bills, and more fun.

6) All natural probiotics. These are 24-hour yogurt and sauerkraut/kimchi. Sauerkraut is the safest, followed by “white” kimchi, followed by 24-hour yogurt, followed by spicy red kimchi. Homemade is always better. If not, make sure it is bought in a glass jar and follows other tips laid out here. These are really good for you but might make you sick when you introduce them, especially after shocking your body with a strict elimination diet the diets mentioned below. It is important to get one or two of these going. Pretty much any other naturally fermented vegetable is okay too. Fermentation from sugar mixes, not so good.

6) Diet rules. Follow the auto-immune paleo diet and/or SCD food diet. Cross-reference for bad FODMAPS on the FODMAP diet too until digestion is settled and out of a flare. Then adding FODMAPS is okay, but not during a flare. Always gluten free, dairy free, soy free, until you are out of flare. No coffee or alcohol until out of a flare. NO artificial colorings or preservatives EVER AT ALL. Pesticides are not good. Fertilizer is okay. You should plan to get sick (in a different way) when going on these diets. Your body, taste buds, and psychological disposition won’t like to make this adjustment, and you can consider yourself lucky if you can keep even one of your top twenty favorite foods/dishes. You will want to cheat. It won't work; it will make sick. Just forgive yourself and try again.

Note: Taking drugs are something you do at home and privately, but diet constraints will essentially mean that you are now a new class of disabled person which is “dietarily disabled,” This is not fun, easy, or convenient, but you can learn to make it less so with time. You will need to have your friends and family come together, and you will have to have an honest discussion with them about this. You will need their support. If they don’t support you, and you try to act like you don’t have a problem, you will continue to get sick. Get used to being different and probably never being able to eat with anybody again the way they eat. It is a disability that will affect your social life and one that is especially hard for many people to grok as it is on the inside and not the outside. This is especially true for your friends and family who knew you since before when you were okay. If you could walk and then had no legs, they could get it, but to them, you seem the same. You aren’t. That is often hard for somebody with Crohn’s to personally accept and also too for the people around them.

C) Lifestyle
1) Sleep well

2) Remove yourself from stressful situations and people

3) Very light but regular physical activity. If outside, then it is better. Try to get some sun and all natural vitamin D with your exercise
12-20-2017, 11:07 AM   #2
Scipio
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C) Lifestyle
1) Sleep well

2) Remove yourself from stressful situations and people

3) Very light but regular physical activity. If outside, then it is better. Try to get some sun and all natural vitamin D with your exercise
I'm very glad you have found relief from your symptoms, however difficult the struggle and sacrifice. However, for many Crohn's patients I would caution against getting some sun. Some Crohn's drugs, Stelara for example, carry a significantly increased risk of skin cancer, so for people taking those drugs staying out of the sun as much as possible is very important. Vitamin D can be adequately delivered by pills. Sun not required.
12-20-2017, 02:07 PM   #3
ronroush7
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I am glad you have had success.
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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.
12-22-2017, 04:46 PM   #4
OleJ
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Jabo thanks for the summary. It all sounds very familiar. Especially your observations regarding the social implications of being "dietary handicapped" are spot on.
Are you able to stay in remission on your diet and lifestyle changes only, or do you take Humira as well?
I try as best I can to stay away from medicine, and I live pretty much the way you are describing has allowed me to get off the biologics.
I struggle to manage without a low dose of Methotrexate, though (around 10mg/week).

Recent research suggest that in active CD, the pathogenic yeast Candida Tropicalis team up with E.Coli and another bacteria, S. Marcescens, to form a biofilm that create inflammation.1)
This could be an explanation why simple sugars, such as white bread, soda, and, processed foods is an absolute no go - those kinds of carbohydrates feed the yeast.
Also, some researchers are suspecting another bacteria, MAP, that is found in milk and cows meat. I stay clear of all dairy, even SCD style yoghurt. The probiotics might be beneficial, but the chance to ingesting live or dead MAP bacteria is something to consider. You can look over at the Anti-MAP Therapy Support thread for more info on this topic.

1)Bacteriome and Mycobiome Interactions Underscore Microbial Dysbiosis in Familial Crohn's Disease.
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