New to this site

[bella2]

Hi everyone,

I was diagnosed with Crohn's disease about 10 years ago. I have always had poor eating habits and difficulty dealing with stress, so it comes as no surprise why I developed this illness. I also had a history of constipation throughout my life. I have had countless surgeries, been hospitalized, and been on different meds (prednisone, pentasa, remicade, asacol).

I was finally in remission after being on Remicade in 2003. I have only had one flare-up since then in 2006; as a result, my doctor increased my dosage and frequency of Remicade temporarily. After many years of feeling great, I began to feel like I didn't need the Remicade. Of course, my doctor would never consent to that. I began to space out my infusions more and more. Instead of going in every 8 weeks, it became 12 weeks, and then 16 weeks and now... not at all..

I started doing some research and have become interested in alternative treatments. I realized that being off my meds is a big risk but it is one that I am willing to take. Remicade is just not affordable for me. Even with my insurance coverage, it was still ridiculous. I started to eat healthier and incorporated ginger into my diet. Ginger is so amazing and its known for being an anti-inflammatory herb. I have found that the best way to use it is to make the tea.

I am happy to say that I have been off of Remicade since September of 2011 and I feel great.

 

[Angrybird]

Hello Bella and welcome to the forum. I am really please the Remi was able to get you into remission and that you are feeling well

Do you still see you GI at all so things can still be kept an eye on?

AB
xx

 

[bella2]

Hi angrybird

I am not currently seeing a GI doctor. I am considering finding a Chinese Medicine doctor who specializes in GI. Thanks for your concern!

 

[David]

Hi Bella and welcome to the community. Thanks for sharing your story!

I can understand your desire to go off the Remicade. But I would definitely have a doctor of some sort monitor you to make sure that there isn't some inflammation that isn't causing symptoms that is slowly creeping up on you.

Besides ginger, what are you doing to help maintain the disease? Would you like any suggestions?

Again, welcome!

 

[bella2]

Hi David,

I use probiotics, chia seeds, turmeric, cumin, and other spices in my food. I am open to suggestions. Thanks!

 

[David]

Ideas that come to mind are low dose naltrexone, medical marijuana, supplemental elemental nutrition in conjunction with either the paleo diet or specific carbohydrate diet. In addition:

- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above. I worry that if all you do is what you've listed, that the disease will sneak back up on you sooner or later. Close monitoring will hopefully allow you to catch it in the early stages if that is indeed the case.

 

[kiny]

There's many anti-inflammatory herbs, ginger, tumeric, boswellia, wormwood, etc. The problem with most studies is the lack of research and I feel somewhat that people are misinterpreting what they say. Yes they can induce remission in some collitis strains of mice for some time with just herbs, but they are giving them by super huge doses and they're still collitis mice, they still can't induce crohn in them, they induce symptoms in them that look like crohn by using strains that are highly susceptible to it. I love herbs, but I know that they don't pack the same punch as most drugs, the upside is they have less side effects, if taken in correct doses and taking herbs that are know to have a high toxicity limit (most anti-inflammatory herbs have a very high limit, would still be careful though).

I'm mostly interested in herb's capacity to affect TGFbeta1, related to intestinal fibrosis, since unlike anti-inflammatory agents, there are almost no anti-fibrosis agents drugs out there (at least not for crohn's disease, there's plenty for cystic lung fibrosis).

 

[bella2]

Thanks everyone.

I definitely try to stay active and have done yoga and other types of exercise in the past. I have reduced my stress tremendously, which has definitely helped as well. I definitely need to take more vitamins and minerals, so I appreciate your suggestion. I am not a fan of drugs, so I will try my best to avoid them unless absolutely necessary. Thanks again for your input.