Posted 12/1/2014 7:54 AM (GMT -6)
I am sorry you are going through so much. This time is meant to be focused on fun and your future, not this DD.
I am a member of a number of forums and unfortunately this is what I have found. Most GIs only know, or want to know, about big pharma drug treatment. Your experience seems pretty consistent with most folks I read about. Additionally few folks find long term healing with holistic docs. They simply do not know that much about Crohn's (Hope you prove this wrong if you go to a Holistic Doc).
I have found that finding an alternative path takes personal research. I know that is not a good answer when you are feeling so poorly, so sorry. Additionally, of course, there is no consensus on even the cause of Crohn's much less how to treat it.
As I understand it, the various camps are based around, 1) it is an infection - take antibiotics (there is a Dr. in Australia that is doing breakthrough work) 2) it is auto immune - take immune suppressors 3) it is a bacterial imbalance - restore bacterial health in your gut (diet, fecal transplant, I think worms fall here, but not sure). Of course as no one knows it could even be all three. For example, You wipe out all bacteria because you were on long term antibiotics, which screws up your immune system, allowing an infection to grow.... I am sure there are other hypothesis regarding cause, but I cannot think of any right now.
In my case, I was on long term antibiotics, so more antibiotics is not something I want to do. If it is auto immune, then I can not think of anything else to do except take immune suppressors. I really do not want to take the big guns, so will do just about anything to avoid them if possible.
Therefore, the only real potential for me to do anything is to get the gut back in balance, and there is much we can do about that. When I was first diagnosed I did not know about fecal transplants, and there is a certain yuck factor, that for me does not make it first choice. However, I will for sure try this before big drugs. The results are very very encouraging. I am not so sure about worms, but if I get into trouble I will do research here also, but I know very little about worms.
I said to myself, my gut is in trouble, we put food into it every day, there must be something that can be done re diet. I read the Makers Diet, and a bunch more books and studies. Rightly or wrongly I concluded that The Specific Carbohydrate Diet (SCD) was my path. It took 8 months before I saw improvement, but 5 years later I am still on the diet and have 100% clear guts as confirmed by both a colonoscopy and pill cam.
I am not trying to sell you on the SCD, but rather to provide a framework for research and analysis. I will also point out, that if you go to a Holistic Doc, then you will receive the benefit of only their research and bias. If they have heard of SCD, Makers, Low FodMap, Low Res, ... researched it and formed an opinion, then that bias will be included in any recommended plan. If not, then of course they will not present what they do not know as an option. Given the above, and my experience personally and from others, I have concluded, that to understand and evaluate all the options I have to do my own research and cannot rely on anyone including the GI or GP or a Holistic Doc. I know this is not a very good option for you when you feel so poorly but I do not see any other path.
In addition to diet, I also take LDN, which is to do with getting the immune response corrected. I take this, if I am honest, not because I fully understand, but for three reasons. 1) It has a very high success rate. 2) The drug has been around for something like 50 years and there are no known important side effects (some report more vivid dreams) 3) It is cheap 4) A lot of SCD folks take it
I also take a very low dose of Pentasa. This is my nod to main stream docs and pharma. Unlike LDN 1) It does not have a hich success rate 2) There are negative side effects and I get them at a higher dose 3) it is expensive 4) most SCD folks do not take it. Research says it is most probably, a waste but I am a bit chicken to take nothing that traditional docs prescribe.
In addition to the above I take both nutritional and healing supplements.
That describes my approach and conclusions. Hope this provides some help as a framework moving forward.
I hope you find a healing path that works for you