Feeling hopeless

Crohn's Disease Forum

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Jul 6, 2017
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Hello. I am new to this. I am a stay at home mom with an autistic child. My husband recently lost his job because of my illness. I feel guilty in every way. I do not know what else to say. We live in a rural area and doctor's appointments are expensive has wise, never mind the fact of no insurance. I feel hopeless honestly.
 
Welcome. You have come to a very supportive group. I am sorry for all you are going through. Sending support and prayers your way.
 
Thank you so much for responding. This is awful and I do not know how to explain it to people. I hope you are doing well. Thank you for your prayers, truly.
 
I am so very sorry things are tough. One of my children has a learning disability--minor in comparison to autism--and I know how tough it can be. Are you eligible for Medicaid? If your husband lost his job I would look into it. You might also try contacting Senator McCaskill's office? She has spoken out about the importance of Medicaid in Missouri and might be aware of resources for you. Also, be sure to check with your doctors and hospital about programs to help you afford medical care. Your doctors, health clinic, and/or hospital should be able to help you with a payment plan.

Regarding your husband, please try to remember that you both decided to care for and help each other, both in sickness and in health. I am sure it is hard for him to see you suffering. Please take care.
 
We know how it feels for sure and I hope things get better. I wrote this to give some new ideas , this is almost everything that has helped me the past 7 years with minimal medications but i do recommend using meds, I use lialda. but i have found many other ways to manage my symptoms and to avoid things that make symptoms worse.

usually a combination of Medication's, dietary changes and supplements will help the most. Some of the diet info may be difficult to apply because I make everything from scratch but you can still use it to generally guide your decisions as for what to eat.

1. SUPPLEMENTS-
Vitamin d- 1-2000iu in summer, 2-4000iu in winter. studies show this helps reduce crohn's symptom's.
Niacin- as nicotinic acid 100mg, protects mice from colon cancer.https://www.iherb.com/pr/Nature-s-Way-Niacin-100-mg-100-Capsules/1999

Vitamins e and c, these will help boost your immune system to fight off bad bacteria in your body. Take 500mg of vitamin c every day and Vitamin e 400iu tocopherol once per week only. you can also take one tocotrienol pill once per week as well.

probiotics- take VSL#3 as this is been used to treat pouchitis and U.C. and one of the best on the market. I take 50 bill per day and I believe taking more may be better, this doesn't do that much actually for crohn's but I've noticed more benefits for my anxiety and depression. I recommend the sachets over the pills because the material the capsules are made of is not good for gi issues, if you get the pills, put them into gelatin capsule.

This brand has 40 different strains and 2 very important strains b. infantis and L. reuteri. You can divide the pills since the dose is pretty high and put into gelatin capsules.
http://www.renewlife.com/ultimate-flora-extra-care-probiotic-150-billion.html

Resveratrol I use this supplement but small amount and it suppresses some symptoms, I use about 1/10 of one capsule per day, doctors best brand, this is optional though.

Carotenoids- carotenallx2 and lycomato x1.




2. be selective with carbohydrates-
avoid simple and refined sugars like corn syrup and white sugar. consume low sugar fruits like cranberries, apples, grapefruit. reduce intake of grapes, raisins or banana.
Avoid lactose in milk which is also a sugar, eat cheese for calcium instead and consider calcium supplements calcium carbonate is fine I buy calcium carbonate powder and put it into empty gelatin capsules so there are no fillers added.

complex carbs like rice corn and potatoe can cause problems, I find oats, well cooked pinto beans, and some brands of whole wheat are fine. White bread without iron is also tolerable. there is a book called breaking the vicious cycle that is a special diet developed around this idea to help treat IBD and other conditions the diet is called the specific carbohydrate diet or SCD diet. It's tough to adhere to and also includes making you own yogurt, I've tested many principles in the book and tried to summarize it for you here but read the book sometime.

3. low fod maps-
these are certain fermentable carbs and fibers in food that seem to irritate ibd like onions and garlic. I find brussel sprouts, cauliflower make me feel weird the next day.Read more about what a low FODMAP diet is it can help guide your food choices.

4. Avoid Organic foods.
I know it sounds unexpected, but almost everytime I’ve tried organic food ive had an increase in symptoms. I’ve learned more about organic foods and the only explanation I could come up with is that organic pesticides and herbicides aren’t regulated like conventional, therefore since farmers believe they are safer and usually less effective they use more on the food and all these claims are yet to be properly evaluated by science and translated into laws, as far as ive learned. Supposedly the organic pesticides are considered natural but anything that not natural to the human diet is a potential toxin and anything that’s even required by the human body could become a toxin in a high enough dose consider iron or even water which can kill people if they overdose, so organic pesticides and herbicides are no different.

5. be aware of your omega 3/6 ratio of fats, consume and cook with canola instead of corn oil, don't eat butter or fatty meats like sausage or bacon. Take a little fish oil but not alot. I get fat from walnuts, unshelled pistachios, canola oil, and whole olives olive oil is also a good choice for fats.

6. make a morning herbal tea- this can kill some bad bacteria that try to live in your gut:
I use green tea ½ bag, 1 tablespoon basil, 1 teaspoon italian herb blend, pinch of cumin , pinch of clove , pinch of black pepper, and most importantly fennel 5-10 seeds or more. One day a week I will add pinch of peppermint pinch of turmeric, they are beneficial but taking these everyday leads to toxicities in my experience.

7. drink irradiated water so that any microorganisms from water supply are killed that might invade your gi tract. Find glacier water dispenser in your area, their water is irradiated which basically like the water being microwaved. http://glacierwater.com/refill-station-finder/

8. Avoid meat and eggs, typically these have negative effects on gi disorders fish low in mercury may be beneficial though studies show protection from colon cancer, I haven’t tested fish much over the years though ive avoided meat entirely.

9. cook your veggies and don't eat them raw. start with broccoli spinach and saur kraut. slowly test others as you go.

10. Avoid emulsifiers and Artificial sweeteners they have been linked to causing IBD and other diseases they can feed bad bacteria in the good which outcompetes the good bacteria.
Emulsifiers include Polysorbate, Xanthan gum, Caregeenen, modified corn starch, or any modified starch, hydrypropylmethylcellulose, or anything methylcellulose. Natural unmodified starch guar gum locust bean gum is likely fine and cellulose is sometimes fine.
Some artificial sweeteners include sucralose, aspartame, saccharin, acsulfame k, I find stevia also irritates me but may be the healthiest.
Also avoid arginine supplements, any supplements with high amounts of niacin(except for nicotinic acid) or inositol.

11. If you are really adventurous you can look into fecal microbiota transplants follow the link below its good to learn about them anyways.Some scientists believe it has cured people and I have tried 4 of them with some benefits derived and planning to do it again. Here is my article/blog: http://fecaltransplant2015.blogspot....ibd-fecal.html
I think it's the best collection of information on FMT that exists besides the thread I have on this website follow the link below.
 

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