My GI Follow-up and LDN

[Guest guest]

I went to my GI today for the sole purpose of discussing LDN with him. I have not seen him since my colonoscopy last June of 2008. We had spoken on the phone after my colonoscopy to discuss blood tests and medication.

So, I found out today that I do not have UC throughout my entire colon, it is left side only and he said I have Procto-sigmoiditis.

I inquired about the specific risk for colon CA--I wanted numbers-- and he stated that for every 10 years since dx, the risk goes up 10% more than the general population. He said with my dx that the risk is less. He also stated that for all the years in practice, he's only seen 2 patients go on to have colon CA and one had not kept up with her screening. He said there is a small percentage of patients who also resolve spontaneously on their own.

I told him that I had weaned down to one tab of Lialda once or twice a week and his jaw dropped. I reminded him of our discussion of SCD a year ago and how I found the more yogurt I consumed, the better I did. I told him I feel great. Because of this, he felt that I could wait one more year to have another colonoscopy (yay!) He is not impressed with dietary changes, like most GI's, but he was open to me trying it when we discussed it last year.

So then I pulled out Dr. Jill 's study of LDN and Crohn's published in the Journal of Gastroenterology and went into my spiel about the FDA approved drug being used for off label purposes ( he used to be a pharmacist, too) and the studies and how Jill was given a grant by NIH for her work, etc. I also told him that I could have done this on my own--obtained the drug and formulated it into a liquid and dosed myself-- but I wanted him to be on board; to participate and perhaps we both could learn something in the process and I also wanted him to monitor me. He told me he doesn't normally get involved with off- label drug use, but the Journal was well respected and Dr. being out of U of PA and the NIH made it even more credible, so he was going to discuss it with one of his associates who is really on top of all things IBD, that he would do some homework and he would get back to me. I agreed, as I am feeling well and there is no rush but I told him that with it's low side -effect profile, that I was willing to try it and discontinue my Lialda forever. He responded that it certainly would be better than Remicade, probably thinking of his other patients. He repeated that he would do his homework and that possibly, we both could learn something from this.

I found this to be really positive and I have hope that he will agree to prescribe and participate. I'm also really excited to have the chance to perhaps educate one of the most well known GI practices in Providence and in turn, help other people. If he decides it's not for him, I will pursue it on my own.

My only concern is that because I have such mild disease, that any improvements that I make with SCD and/or LDN will be trivialized--that they can say I would have improved anyway, that I was one of those 10% that resolve on their own .

Just wanted to share my F/U with all of you.

Terry

UC--proctosigmoiditis June 08

SCD July 08

Lialda down to one tab once or twice a week

Tamoxifen

Hopefully, soon to be on LDN