Re: My GI Follow-up and LDN

[Guest guest]

Terry- this is great news, that he even listened to the idea of LDN. Would you

please cite the reference for that study? I would like to see it.

I wish more GI's would at least listen to diet. I appreciate why they don't jump

on every " alternative " out there, but it would be nice to have more support. I

know there are some SCD friendly ones, but not in my area.

PJ

-- In BTVC-SCD , " Terry Rumas " wrote:

>

> 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

>

[Guest guest]

PJ,

http://www.nature.com/ajg/journal/v102/n4/abs/ajg2007152a.html

This is just the abstract--I really needed the whole study, that's what he said he was going to look up. I don't know how to access the whole study--perhaps on pubmed or medline. But this was enough to hook him. I truly think that if his associate tells him he thinks it's a bunch of bunk, he won't agree to prescribe.

Most MD's don't put a lot of stock in diets for IBD. Even this one told me that he had heard of SCD from another patient of his who had been very ill, on a boat load of meds, who came in and told him he was going to start SCD. My GI told me he thought 'Oh, another diet", but he said his patient started to get well, finally after all the years and all the meds. So, he told me to try the diet, but he wanted me to also try the Lialda, which I thought was fair. I don't think he would ever advocate SCD, but he wouldn't discourage a patient and I know that other patient's improvement made a mark for him.

I'll keep you posted and thanks for your support.

Terry

[Guest guest]

PJ,

http://www.nature.com/ajg/journal/v102/n4/abs/ajg2007152a.html

This is just the abstract--I really needed the whole study, that's what he said he was going to look up. I don't know how to access the whole study--perhaps on pubmed or medline. But this was enough to hook him. I truly think that if his associate tells him he thinks it's a bunch of bunk, he won't agree to prescribe.

Most MD's don't put a lot of stock in diets for IBD. Even this one told me that he had heard of SCD from another patient of his who had been very ill, on a boat load of meds, who came in and told him he was going to start SCD. My GI told me he thought 'Oh, another diet", but he said his patient started to get well, finally after all the years and all the meds. So, he told me to try the diet, but he wanted me to also try the Lialda, which I thought was fair. I don't think he would ever advocate SCD, but he wouldn't discourage a patient and I know that other patient's improvement made a mark for him.

I'll keep you posted and thanks for your support.

Terry