Crohn's Disease for over 35 years

I have had Crohn's Disease for over 35 years. I have tried Asacol, Sulfasalazine, Entocort, Imuran, Remicade and of course Prednisone. I have only been hospitalized once, 3 years ago, with a partial bowel obstruction and was put on Remicade which ended up to be a horrible experience. I developed such bad arthritis that I could hardly function. I was in constant pain. I also had hair loss, memory & nerve issues. These took more than a year to get better. I am now on Low Dose Naltrexone, Probiotics, Vitamin D, Calcium, Iron, B12 injections, Apple Cider Vinegar, Colloidal Silver. I rarely eat sweets or sugar, no beef or pork, no raw vegetables, only gluten free bread. I am feeling pretty good (I have a positive disposition) and benefit from meditation and my spiritual practice. My specialist is not pleased with my choice not to be on another biologic like Humara or Entyvio but I am convinced they are poison! My last fecal protectin test showed high levels of inflammation but I am working on lowering that with diet. I would be happy to offer my help to anyone!

11 Replies

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  • Thank you for your post. I would like to advise any diet or exclusion diets should be carried out under the watchful eye of consultant and/or dietitian. Whilst I agree changing of diet and avoiding certain foods help some people, we are all different. what works for one person doesn't necessarily work for another - the same as medications. Unfortunately in later stages of Crohn's and UC it canot be controlled by diet alone.

  • I agree with you that medications and diet work differently for each person. I found using an elimination diet to find the foods to avoid worked well. Low Dose Naltrexone has been working for me the last two years, along with diet, supplements and spiritual practice. I encourage people to try a more natural approach when possible!

  • I think you might want to consider adding turmeric to your supplements as I believe it is good for inflammation, but as always verify with your doctor first.

    webmd.com/vitamins-suppleme...

  • I wrote a long and detailed reply to you yesterday which for some reason would not post ! So am trying again today.

    I enjoyed reading your post and found many similarities. I was diagnosed over 40 years ago and have had many surgeries over the years with the added complication of abscesses. I was initially hospitilised for over 6 months with ileo--caecal TB at 27 - and after five operations was also diagnosed with Crohns in the ascending colon.

    I have always found that any medications made me worse and not better. I moved to Crete on retiring in 2004 and in 2005 was diagnosed with Hashimotos Thyroiditis - another auto-immune condition. This I manage myself too as the regular treatment was not working for me - so I am T3 only.

    A couple of years ago a colonoscopy revealed only low grade lesions and the Gastroenterologist was quite shocked my gut was so healthy - so had to agree my thyroid and supplement treatment was obviously working well. However I was still given a prescription and on researching decided it was not for me :-) The prescription still lies in my file !

    So why do I mention the thyroid ? We have trillions and trillions of cells in the body and everyone of them has a receptor for T3 - which is the active thyroid hormone - so when the T3 is low things begin to go wrong. You can have a healthy thyroid that produces T4 - a storage hormone - but it has to convert into T3. This only happens when the levels of B12 - Ferritin - Folate - VitD - Iron are all optimal and not just bumping along the bottom of the range. There are so many reasons why these levels are low in the body - and mal-absorption has to be one of the biggies. Also Thyroid anti-bodies are rarely tested - possibly due to cost. No coincidence I was eventually diagnosed in Crete !

    Most of the receptors for T3 are found in the brain - and the second highest in the lining of the gut so .....

    Also the Testing and Diagnosis of the Thyroid is very low on the agenda and is poorly understood - along with B12. I am also on the PAS forum as well as Thyroid and read harrowing posts of medical incompetence everyday.

    Was wondering what levels of B12 and VitD you are taking ? I was taking 10,000 IU's until someone pointed me in the direction of TH1 and TH2 - and which one is dominant - so have reduced to 5000. Important to take K2 as that directs calcium to the bones away from the arteries and soft tissue. VitD improves the uptake of calcium from foods - so am wondering why you are taking additional calcium. Large doses of VitC are also good for lowering gut fermentation - which I take at night.

    Going Gluten Free is also a must as gluten molecules adhere to the gut wall and cause inflammation and LGS. My thyroid anti-bodies are now lower after 3 years of being GF - it does take time.

    I think taking control of our health with diet and lifestyle is key in finding the road to wellness and not expecting a pill to do the job. Most medications cause more problems and treat the symptoms rather than the root cause. We have to search and think outside the box. I started teaching yoga at 65 and have two classes a week - swim loads in the summer - run a Guest House and Studio business and am generally busy as I hurtle towards 70 in September.

    I am not a medic - just a fellow sufferer with Hashimotos and a B12 issue too :-) Click onto my name to read my edited Profile and about my journey !

  • So are you saying you need the water and the Silica - which I presume are tablets. As you can see from my profile - I live in Crete - so a little more information would be helpful. Brands here are different. Thank you ....

  • Thank you. Very helpful.

  • Thank you for your post Marz! I had thyroid cancer 30 years ago and had half my thyroid removed. I get my thyroid tested frequently but will discuss T3 with my Doctor next week. I get B12 shots every month (1ml). I take 1,000 IU Vitamin D 3x a day. I have had low calcium levels most of my life and take 600mg 2-3x per day.

    How much K2 and Vitamin C do you take? I have always loved bread but I know it creates havoc with my gut, so I only eat gluten free bread now and it's really helped! I found an awesome brand at my local grocery store that is not heavy and tasteless.

    I truly believe we are in control of our health. What we believe, how we think, feel and react to our world are all paramount in living a good life in spite of this disease. Meditation and journaling daily help ground me, as does walking our dog in nature.

    I agree that most medications cause more problems and only treat the symptoms. I refuse to be a guinea pig anymore.

    I am so happy to hear that you enjoy a full and active life! And such a positive attitude!

    Namaste and keep smiling!

  • Hi I was interested to read that you may be able to reduce inflammation through diet.

    I've got quite bad inflammation not only in the intestines but also in the eyes.

    Can you recommend any particular dietary changes thar might help?

    I'm on a low residue diet at the moment and small portion sizes.

    I've had Crohn's for 5 years and am on Azathioprine. Was on steroids for a number of years.

    Thanks

    Tracey

  • Hi! Since every one of us is different, it is important to try eliminating foods one at a time to find out if it is a trigger. What works for me might not work for you. That being said I have had success in getting rid or at least eating much less of the inflammatory foods.

    1. Sugar and most substitutes. I use only organic coconut palm, honey or stevia.

    2. Vegetable Oil, Grape seed, Sunflower, Corn. I use only Extra Virgin Olive Oil.

    3. Deep Fried Foods, Fast Food, Commercially Backed Goods

    4. Dairy Products (60% of population can't digest milk). This is a hard one for me. I do use butter and cheese.

    5. Red and Processed Meat. Hamburger doesn't seem to bother me. I eat lots of chicken and fish.

    6. Refined Grains; White flour, White Bread, Noodles, Pasta. I use Gluten free when at all possible.

    7. Nightshades: Potatoes, Tomatoes, Peppers. These cause a lot of inflammation! I substitute Sweet Potatoes (great baked) and Turnip Fries are really good!

    What helps me with inflammation? Turmeric, Ginger, Salmon (2x week), Shitake mushrooms, Green tea, Papaya, Blueberries, Broccoli, Cauliflower, Spinach, Sweet Potatoes. I also take Digestive Enzymes with every meal, Probiotics, Peppermint essential oil supplement (between meals) and Applecider Vinegar (1 Tbsp each morning).

    Watch your Fiber intake when you have a flare!! Fruits and Vegetables have high fiber content and you need to cut them out until your flare is over. Carrots are the safest to use.

    I know this looks very limiting and it is. But you get used to it, especially when you start feeling well. Like I said before, everyone is different and what works for me may not work for you. Good luck on your journey!

  • Hi Cbeckwall,

    This is my first visit to this sight...and by what I have read I wish I had come here sooner for support. I am the father of a six year old boy who was diagnosed at almost 3 years of age with Crohns. His biopsys from colonoscopies and endoscopies this last year as well as the stool samples for labs indicate moderate inflammation throughout his GI tract. He currently takes Pentasa 1.5 grams devided in half for 2 oral doses, ( 3 capsules am/pm). But this isn't keeping inflammation in check. We try to do naturalpathic in conjunction with conventional...probiotics, smoothies, foods that fight inflammation....blueberries....tumeric...etc. Now his GI Dr. would like us to start him on MP-6...Mercaptopurine...a chemotherapy agent...in fact she has been pushing us to get him on it for the last year. Other than his stools not being completely formed he has no external signs or symptoms...he is very active and seems to normal as any other healthy child. His mother is filappino and didn't grow up medicating as we so openly do here in America. So its been hard for her to give a young vibrant innocent child a medication that can potentionally harm his immune system and cause problems in other systems of his body....any suggestions on what we should do? We, as his parents, have strong Spiritual beliefs, and have taken our petitions to a higher power....but we are at our wits end as to what to do...our son is too young to understand the gravity of the situation. I know if the inflammation isn't lowered, corrected...that the tissue inside his GI tract will get so much scar tissue that it won't be viable to do it's job and he will end up with bowel CA ....multiple ressections or some form of colostomy.....I've read some of your posts dear person...and would welcome any wisdom / thoughts from your years of experience.

    Gratefully yours, James1David3

  • Hi James,

    I am so sorry your son and family has to deal with this disease. Unfortunately most of the medications, if not all, have unpleasant side effects and do more harm than good. From a GI's perspective I'm sure this is the next step in medication. But I agree with your wife!

    Since your son is active and has no external signs or symptoms, I would be inclined to do a Fecal Calprotectin test every 2-3 months. This is a simple poop test that measures inflammation in the gut. That way you can watch his inflammation numbers and make a decision if you have to.

    I would also look into Low Dose Naltrexone. It's unconventional, but there are no bad side effects and it boosts your immune system rather than deplete it. There is a group on Facebook called IBD and LDN Chat Group. It's a wonderful group and they are happy to answer all questions. I have had much success with LDN.

    Does your son take dairy? If so, you may want to eliminate it and see what happens. Also make sure he is drinking lots of water!! Most people with Crohn's are dehydrated.

    One tablespoon of Apple Cider Vinegar (in juice) every morning should help his stool form better. Make sure he brushes his teeth after!

    Please let me know how you make out! You can always send me a private message. I am happy to help in any way I can! Keep that positive energy flowing! Your son is in my prayers!

    Carol