No Meds for me..

therearemiracles - I was diagnosed 5 years ago with moderately severe crohn's. My first flare was horrendous...got down to 83 lbs. from 104 at 5'2". Anyway, I took Gastrex about 6 times a day and swear that it did more for me than anything else I was taking at the time. I always keep it on hand.

When I do take it I empty 3 capsules into a glass of warm water, stir, and let the okra slime get nice and thick. Then down the hatch it goes. Ahhhhh...gastrex coctail. I did have to take extra minerals, though, because of the clay in the Gastrex and the amount I was taking. It's no respecter of what it draws out of the body, including minerals.

I also take AF Betafood and Cyruta Plus (buckwheat). I sometimes take the Collinsonia just to ensure that hemmies stay away. But I certainly wouldn't be without my Gastrex.

   i have pancolitis an i took all meds they do noy work for me so i do not have any meds to take anymore. what should i take besides fish oil? i want to get surgrey but not the pouch having a bad time with doc.

Post Edited (mmaria) : 10/31/2007 4:39:55 PM (GMT-6)

ThereareMiracles

My chiropractor did a bio-meridian test on me which is suppose to tell of weakness in body systems. I did not tell them that I had UC & the test showed that I have a weak GI system. He recommended Zypan, Zymex & Super EFF. I only have been taking them for 2 weeks. He wanted me to take Cataplex B & Cataplex G also but I haven't started them yet. I thought I could tell a difference for a while but the last 2 nights, I have had several urgencies. I take the Zypan & zymes with every meal & super eff in morning & night. going to stick with it to see if they will help.

I tried the gastrex and it made me go from semi-formed to water instantly, so I felt like it set me back again. I tried it for a week, but it never got beyond water coming out.

I think Im going to take the Lialda.. Because of this article from CCFA. I figure it cant hurt..

http://www.ccfa.org/reuters/mesalaminecrc




Mesalamine reduces risk of CRC among IBD patients

Last Updated: October 16, 2007 (Reuters Health)

NEW YORK (Reuters Health) - In a case-control study, the anti-inflammatory drug mesalamine protected against the development of colorectal cancer (CRC) among patients with inflammatory bowel disease (IBD).

The results were presented Monday in Philadelphia at the 72nd annual scientific meeting of the American College of Gastroenterology.

"Other studies have also found that mesalamine reduces colon cancer risk," Dr. Ann L. Silverman noted in a telephone interview with Reuters Health. "It makes sense," she explained, "because whenever you have inflammation, like in IBD, you have increased cancer risk, and if you reduce inflammation you reduce the risk and that's what mesalamine does."

In a retrospective, case-control study, Dr. Silverman and colleagues from Henry Ford Hospital, Detroit, carefully matched 16 IBD patients (13 ulcerative colitis and 3 Crohn's disease) who developed colorectal cancer to 23 IBD patients (19 ulcerative colitis and 4 Crohn's disease) who did not develop colorectal cancer.

The researchers found that all of the ulcerative colitis controls (i.e., those that did not develop colorectal cancer) used mesalamine, while only 76.9% of the patients with ulcerative colitis who developed colorectal cancer used mesalamine (p = 0.028).

Conditional regression analysis showed that a cumulative dose of mesalamine over time totaling 5068 grams or more was associated with an 89% reduced risk of colorectal cancer (odds ratio, 0.11).

The researchers also found that colorectal cancer cases also used folate more often than controls, but this was not associated with a reduction in risk of colorectal cancer. There were no between-group differences in use of mercaptopurine, nonsteroidal anti-inflammatory agents or steroids.
Date posted: October 29, 2007

Hi..I was diagnosed coming on 19 years ago (although had UC for about 3 years previous)...and have been on 5ASA meds almost the entire time.

My last c-scope showed NO dysplasia, NO inflammation thorughout my entire colon except very mild (redness) for 5cm in the rectum. My doc and I attribute the use of the 5ASA meds plus my faithfulness in using them for that long. Although I'm one of a few of his patients who have stuck with it for that amount of time....I hope that my experience can be of benefit to others who are ready to poo-poo the meds for long-term.

I don't believe one has to be on a high dosage....just high enough to do the job.

I am able to take salicylates....no problem, for which I'm thankful.

I also have PSC (UC-related liver disease which is fatal)...which increases the risk of cancer..to that's two counts against. Again....I attribute the 5ASA meds.

quincy

I believe she's saying she's at an even higher risk for cancer than the average IBDer and that the 5ASA meds have protected her that well.

Nothing has happened. If I take it its just for the protective effects from the article I posted... Im not that concerned with Meslamine.. Its all the 6mp's and prednisones that freak me out.. But I will say.. each time I log on the "healingwell" somebody freaks me out in a new and grim way.. Im starting to wonder if this place is good for me or not.. All this stuff will turn you into a clockwatcher..

OMG OMG OMG I just farted !!!! I think I have multiple Myloma !!!!

You have to take everything you read on the net with a grain of salt. Of course! There's the verifiable, the highly reliable, and, of course, the flat-out wrong and suspect.

Never get your advice from one source, on the Internet or elsewhere (unless it's like Mayo Clinic or some very reputable site), understand that forums are full of folks with the same ailment and a really wide range of experience and knowledge about it, and the most important thing you can do is educate yourself and get a well-rounded knowledge of what you are facing and find yourself a good doctor.

I do think if you are doing well, that going off your medication can really be courting disaster. I do think it's irresponsible, at the very least, for people to offer suggestions that may do more harm than good, no matter their motivation. You need to take those suggestions and weigh them for the offerer's knowledge of the disease and your doctor's advice. Not that you can't get great advice here and at other forums, but we've all heard the phrase you get what you pay for. If nothing else, a forum makes you feel there's finally someone who really does understand the ins and outs of this or any other disease.

Use a forum for the good it can give you. I personally believe it's infinitely better dealing with medical issues with the Net and forums, generally speaking, than without. The good far outweighs the bad.

Just my opinion.

Mitz

quincy said...
Harpo, therearmiracles...I guess I missed a word in there at the end. Princesea explained it for me...thanks.

In point(s)...
-the risk for cancer for one who has UC is higher than for the normal person who doesn't have family history.

-One with pancolitis is much higher than one with limited disease...although one can get cancer anywhere in the colon..the rectum and lower parts being the highest incidence.

-One who has active inflammation more consistently has a higher risk than one who does not.

-the longer one has UC...the risk is increased. Many choose to have their colons removed before possible cancer for various reasons..not necessarily cancer.

-One who has PSC has a much higher risk of either liver or colon cancer.

I'm saying that I attribute the 5ASA meds for aiding in keeping inflammation in my colon down to a minimum, therefore hopefully aiding in lowering my risk of cancer.
I also believe that if my colon is quiet...so will be the PSC.

That's my hope anyway....and I'll definitely forever refuse the ERCP.

I'll use the 5ASA meds as long as I am functioning...once they stop working or my body rejects them..who knows.

Maybe I'm completely wrong and it's been the coffee all along but the 5ASA meds are getting all the credit ;-)

Be well,
quincy

Gotcha.. You scared the crap out of me.. :)

Thanks for everyones replies.

I agree with Princessa. Unless the MD or GI is suffering from IBD him/herself (or at the very least has his/her spouse or child as a sufferer), I don't feel their God-like pronouncements have that much weight, other than having to be balanced against all sources of information we can obtain. Many docs are either internet illiterate themselves, or feel threatened by informed patients. A good doc should encourage, not discourage, their patients from self-research. The internet is full of garbage and unsubstantiated claims, but we all have brains between our ears.

Thanks so much for your sterling insights, MitzMN & Quincy. Treating UC successfully involves a combination of factors. There are no easy answers, so-- it's best for us to become proactive in dealing with doctors, meds, & supplements-- NOT impulsive.  / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)