Hi nomis.
I agree with the above, keeping the inflammation in check with whatever drug nessecary is essential. I also very much agree that nothing stops you from trying other remedies, as long as they are not harmful. The reports you read from individuals who tell about their benefit from alternative treatments (non-FDA/ not used in hospitals-treatments) are called "anecdotal". In the medical community this kind of evidence ranks lowest, below results from real studies- and that is actually a good thing.
This is what allows us to get effective treatments, that the doctors know will likely give the best possible outcome.
Even though the effect of alternative treatments have not been proven to work in sufficiently powered studies, that does not necessarily mean there is no chance they will work for you. Except if studies have been made that specifically conclude that a given treatment is ineffective. In that case it is wise not to waste any time and effort trying it out.
So what you will have do if you wish to try something in addition to Remicade, is to find out yourself what kind of alternative treatments that are available (and will cause you no harm) you think seems most likely to be worth trying.
A good advice is to see if any studies have been made - even though a treatment has not made it into the common consensus among doctors, does not mean it has not been shown to have an effect in one or more studies. The effect is just not well enough established that doctors can use it.
An example is the
IBD-AID diet. Studies exist that conclude both may be helping CD symptoms
(study 1): IBD-AID)
(study 2: IBD-AID)
I have had CD for 18 years, starting when I was a teenager, and Remicade helped me tremendously throughout college / university. But when I got a serious kidney infection twice (maybe as an allergic reaction to remicade, maybe due to my suppressed immune system, maybe a manifestation of CD...?) I quit Remicade and started making profound changes to my diet and lifestyle. Importantly, though, I kept following my doctor's advice and took Prednisolone for a while until inflammation settled down. I also started Methotrexate. Only after about six month did I taper off prednisolone completely, and after 1,5 years I am now slowly tapering Methotrexate.
Here is what I have done - remember this is just another anecdote, so don't assume it will nessecarily work for you too).
1) I follow my GI's prescription of Methotrexate (MTX), and in agreement with him I am slowly tapering. From 15mg/week and now 10mg/week, I hope to reduce to 7.5mg/week soon. The efficacy of MTX against CD is well established in the litterature.
2) I take a daily Vitamin D3 supplement, 35uG /1400 UI. Several studies conclude that Vit. D3 help manage CD
3) I ride my bicycle at least two-three hours a week, exercise has been / is currently being researched as a way to diminish CD symptoms, for various reasons.
4) I consume no dairy at all. Also no butter, and no milk hidden in processed foods and bars. No ground beef or other meats from dairy cows. Dairy is the primary source of exposure for humans of a mycobacterium called MAP, and there is increasing evidence MAP may be causing CD . Bear in mind though, that this is controversial, and reports of improvement following anti-MAP treatment are anecdotal.
5) I am eating only non-processed, natural foods. Food additives have been found to aggrevate IBD.
6) I followed the IBD-AID diet for two years. Since I have now no longer any CD symptoms I started eating other food items too. I eat very little meat - apart from a little organ meat from grass fed beef cattle, chicken and fish, I mainly eat vegetables, including fermented ones, fruits, nuts, whole grain, and seeds.
I make sure to include prebiotic foods such as jerusalem archichokes that feed the good bacteria, so that they can perform their duties of protecting the gut barrier. Also probiotic foods such as kimchi and sauerkraut to get good bacteria into my gut. The little grain I eat is organics and whole-grain. Mainly oats and homebaked ryebread made with sourdough.
This TED-ED talk is an excellent explanation of why the above above could be a good idea for us with a CD diagnosis.
More often than not I have steamed or cooked vegetables (often leftovers) for breakfast.
7) As a sweetener I use only unheated honey. No artificial sweeteners or refined sugars.
8) I strive to get 7,5 - 8 hours of sleep every night, to give the body a chance to restitute properly. If I can not sleep that long it is an indication that I am stressed, and I need to change something.
9) I never smoke. It is well established that smoking aggrevates CD. In one study Nicotinic acid has been seen to promote MAP growth.
10) I have my calprotectin (CP) levels checked regularily. In my case elevated CP always precedes a flare, so knowing the levels is important.
11) I live as stress-free as possible. Stress puts the body's normal function in a stand-by mode which is very unhealthy long term. If I get stressed, I make sure to get a long period of relaxation and restitution afterwards.
12) I never drink more than two units/drinks of alcohol per day - and very rarely all together. Same with coffee.
