This is not to condone doctors for their actions nor their diagnoses in any way. Like Darren, I was misdiagnosed for several years. Luckily, though, when I went to college I was introduced to a major contributor to the knowledge database for Crohn’s Disease. He was my primary specialist for 13 years. In that time I have come to realize that the prescribed treatments are bubkis and that if you have CD or UC that YOU must take an active role in finding what works best for you. There is NOT a panacea for this condition. Lord knows I tried. Like L. Tuck, I also had a very poor response to remicade. Not only did I have an allergic reaction, but I also contracted several opportunistic diseases — like shingles, etc.

I have now been in remission for two years. I am able to self-medicate, as needed, as I have shown my doctor that I am responsible and able. I give myself B12 injections on a weekly basis. I cannot imagine being without insurance. I consider myself one of the VERY lucky ones.

– Eliza, DISCOVER online news editor

I am still the same weight at 51 as I was in high school. Surgery/disease left me with pernicous anemia and I am dealing with trying to get B12 shots again… because, well, you know, the medical profession knows more than we do about our own symptoms and when I tell them I am tired because I haven’t had a B12 shot in almost a year because of loss of insurance, well, why don’t we run tests to determine the reasons for your fatigue… I can’t get it out of their mind that being thin and tired does not mean HIV or Hepatitis.

With luck, I will get the shot on Monday and continue the saga or trying to deal with the medical profession to deal with what I need.

Luckily today I have gained 40 pounds and feel the most normal I have in a long time. I am on Humira injection every other week, take 4 Lialda’s a day, have cut the majority of carbs out of my diet since excess carbs in your system leads to excess inflammation and take vitamin D3 to lower inflammation.

I wish all of you out there that suffer with this daily the best of luck and hope for a cure for all of us someday. As mentioned above there is no “one size fits all magic bullet” solution, so keep watching the research and keep trying everything.

I was diagnosed with severe UC in 1986. I’ve tried countless diets and pills (traditional and alternative) with varying degrees of success. I’ve used all the 5asa (except Lialda), most of the steroid family drugs including enemas and azathioprine (which nearly wrecked my dad’s liver when he took it for Crohns). If my back was against the wall, I’d certainly try the parasites before surgery.

The blog post paints an unnecessarily simplistic picture of a choice between steroids and surgery, presenting the helminth “option” as if it were Door Number Three. The picture is neither so bleak nor so simplistic. There are in fact five principal lines of pharmaceutical treatment–ranging from the extremely safe aminosalicylates, with very few and mild side effects, through the newer biologic therapies, which carry higher risks. However, no pharmaceutical treatment works for all patients, and between 25 and 40% of
UC patients will eventually have to have their large intestines (colons) removed. Information about UC and Crohn’s, the other inflammatory bowel disease, can be found at http://www.ccfa.org.

Mr Tripps, I appreciate your noting that since you have the luxury of being healthy, it’s difficult for you to completely understand the decisionmaking process that UC patients must go through. I completely agree with you that it’s important for all patients to be educated about the side effects and risks of any medication, and any surgical treatment. You need to understand, however, that when a person living with moderate to severe UC cannot keep their symptoms under control, life becomes very, very awful very, very quickly. It seems to be difficult for people who do not know about UC or Crohn’s Disease to understand that there really are diseases much, much worse than the treatments.

e.g.
http://www.rawstory.com/rs/2010/12/drug-company-ghostwriters-author-work-bylined-academics-documents-show/

Or on the other hand; I wonder what would happen if you intentionally got these worms, then killed them off every 6 months and then reinfected yourself? This might stop the bad effects – and have just a couple of weeks of pain every 6months.

Joel should be applauded for getting his doc to examine the biopsies in detail. Hard data for alternative therapies is a rare find.

Lost an ‘e’ ?