Hi Mia,
Welcome back. Sorry to see that you're still having flares after so many years with this disease. That pretty well proves that the claim made by many "experts", that MC is a disease that runs it's course in a few years, is totally incorrect.
Yes, we have quite a few members who have had this disease for as long as you, and longer. Many of the founding members have had it for more than 10 years, for example. Your other questions are much tougher to answer, though. I don't believe that any rock-solid answers exist, since this is uncharted territory. My personal opinion is that while a few lucky individuals may be able to enjoy spontaneous remission after a few years, the vast majority of us, (who have food sensitivities), have to maintain our treatments for the rest of our lives. A maintenance dose of medications can be used, or diet changes can be maintained, (or a combination of the two), but without following one of those plans, virtually all of us seem vulnerable to suffering repeated, (and usually, frequent), relapses.
Mia wrote:- have I been doing myself harm never taking meds?
That's an especially tough question, because not everyone with this disease has all of the same symptoms. According to research, MC, (whether treated or not), does not increase the risk of developing non-Hodgkins lymphoma, colon cancer, or any other known form of malignancy. On the other hand, there is a slight risk that it can lead to Crohn's disease or ulcerative colitis, but that would almost surely depend on an individual's genes. Without certain genes, one is not likely to develop the other IBDs. If the genes are present, then it would seem logical that the risk of the disease progressing into Crohn's or UC would be more likely, in the event that the MC symptoms are not well controlled. Obviously, that's just an educated guess on my part, since that relationship has never been researched, from the perspective of degree of control of symptoms. The risk of MC segueing into another IBD is very, very low.
Another issue associated with long-term exposure to the symptoms of MC, is the general tendency for longer periods of exposure to symptoms, to result in increased intestinal damage, which seems to make the task of achieving remission, a much longer, and much more difficult project, regardless of the type of treatment used. IOW, the longer we are sick, (with uncontrolled symptoms), the longer it takes for the intestines to heal.
Probably the greatest risk resulting from "inadequately" controlling the symptoms, is the potential for the development of other autoimmune diseases. Again, however, this may depend on the genetic makeup of the individual.
For a contrary opinion, consider that all drugs carry the potential for side effects, and all drugs involve risks. So it's certainly conceivable that by not taking drugs, you may have averted the development of some other issue, due to the use of drugs.
I can understand your aversion for steroids, and I agree that the conventional use of steroids to treat IBDs is best avoided. Most oral steroids become activated by the time they reach the stomach, so they are rapidly absorbed into the bloodstream, as soon as they pass into the small intestine, causing undesirable, (and sometimes severe), systemic effects. However, the active ingredient in Entocort EC, (budesonide), is encapsulated within an enteric coating, which prevents it from becoming activated until it reaches the lower third of the small intestine and the colon. Because of that unique characteristic, as Joe mentioned, only about 10 to 15 % of it is absorbed into the bloodstream, so that the potential for systemic effects, (and the potential for side effects), is only a fraction of the risk, when compared with the other corticosteroids. Because of that, most members here who have tried it, have had very good results with Entocort EC, and many of them have been using it for several years, (usually at a reduced dosage, after remission is attained).
The problem with the other medication options, is that they are either much riskier, (such as the anti-TNF drugs), or they can take virtually forever to bring remission, (if they work at all). Other than Entocort, the other practical options would be one of the 5-ASA medications, such as Asacol, Lialda, Colasal, Pentasa, etc. Generally, they are very slow to bring remission, though, especially for someone who has been symptomatic for a while, and they are basically just as expensive as Entocort, (and just as prone to cause side effects).
If you are interested in trying Entocort, since you have a diagnosis of CC in your files, your PCP might be willing to prescribe Entocort for you - that would allow you to avoid seeing your GI doctor, (assuming that your GI doc is the one pressing for another colonoscopy). Diet management is the safest way to control the disease, of course, but as we all know, it's not much fun to follow a strict diet.
I apologize for not being able to do a better job of answering your questions, but this is such a complex disease, and it affects us in so many different ways, and such little research has actually been done on it, especially from a long-term standpoint, that it's difficult to draw any really solid conclusions. There are a lot of "ifs", "ands", and "buts" surrounding the disease, and we find that the more we learn about it, the more we realize that we do not know.
Tex
It really helps! Hope you get to feeling better! 