Though it is an excellent source, the studies indexed on pubmed are not in fact published by the NIH. While for the most part they appear in good to fairly good journals, It takes a lot more than an individual study to demonstrate the effectiveness of a treatment. Generally, if ten years or so have passed and a preliminary study is not followed up on, it is typically the case that the treatment did not pan out. It is extremely common that initial studies with limited data will show promise, and then turn out to have been random fluctuations (or worse, systematic errors), upon collecting more data. Also, it should be noted that the scientific basis of a treatment is not dependent solely on the quantity of study data backing it up, but also on the scientific plausibility of the treatment given prior known facts about
the medication or the disease. For example, prednisone actually has very little support in the way of RCTs as a UC treatment; however, our understanding of UC and of how prednisone works makes its effectiveness highly plausible to begin with, so the burden of proof is, in a sense, reduced.
I am not sure how you are defining "alternative" treatments. I am certainly not opposed to researching treatments beyond those already established for UC. I also concede that, in cases where an individual's quality of life is severely compromised, it is rational to attempt even treatments that have a low probability of being effective, as long as one can be quite certain that the risk of harm is low
. However, there are two claims you make to which I am definitely opposed
In the meantime I know antibiotics worked for me and many others.
You absolutely do not know this. All you have is an idea of your personal progression of a disease that is commonly known to wax and wane for no identifiable reason, alongside the series of interventions you have thrown at it. Anecdotes such as this are merely suggestive, no amount of them constitutes good data upon which a scientific judgment can be made. I was in the best shape I have been since my diagnosis when I was between jobs and eating fast food all the time, feeling good enough that I almost forgot I had the disease. Were I like some of the less scrupulous posters here, I would have started a thread along the lines of: "Burger King worked for me! Share your experiences". I did not do that, because such stories prove nothing.
It is only recently that after hearing for years from their patients that some of the more progressive GIs began to concede that probiotics might be effective after all.
The idea that GIs have become more accepting of the effectiveness of probiotics based on what patients have told them seems absurd to me. There has been significantly more experimentation in the past decade with certain high-quality formulations such as VSL3, which has proven effective in pouchitis, and Nissle 1917, which has been shown to work as maintenance therapy. These are both supported by significantly more data than "one-off" studies and, moreover, increased understanding of the gut flora and its abnormalities in UC have increased the plausibility factor that I mentioned earlier relative to probiotic treatments. Patient reports have little effect; in fact, it is more likely that patient activism on behalf of a particular treatment is detrimental. Reputable scientists can be deterred from staking their careers on investigating a treatment that is being hyped as a cure-all by patients and practitioners perceived as quacky (ahem...LDN).