Any Info Would Be Helpful

TooManyHats · Post by **TooManyHats** » Thu Feb 10, 2011 5:25 pm

The links below are the supplements my doctor had suggested I take when I saw him last week. Has anyone heard of these products? Are they safe for us/me to take? ANY information would be greatly appreciated. Thank you!

http://www.metagenics.com/products/a-z- ... lutagenics

http://www.thorne.com/Products/Gastroin ... ~SF703.jsp

http://orthomolecularproducts.com/Produ ... 3c5354187e

http://www.metagenics.com/products/a-z- ... ric-Coated

I appreciate you taking the time to read these and give feed back. Thank you!

Polly · Post by **Polly** » Thu Feb 10, 2011 5:52 pm

Hi Arlene,

I'm not really familiar with any of these but would caution you against using any products like this during the initial stages of MC. You would have to check out each product carefully to see if they contain any gluten, dairy, soy, etc. You may not even know yet all of the items you are sensitive to - I turned out to be sensitive to corn, yeast, carrageenan, even Pepto Bismo of all things, and it took me quite a while to figure everything out. Plus during the initial stages of MC, the inflamed gut can react to anything. In the case of the second product (the licorice prep) the URL states that it increases gut mucus. We definitely don't need any additional mucus, IMHO. Mucus is a response to inflammation and we often have too much of it, not too little. My advice to anyone is to eat the simplest diet possible (and no herbs/natural products) until remission has been achieved. Let us know what you decide to do.

Hugs,

Polly

P.S. Your doc isn't selling these, is he? I am always cautious if this is the case.

TooManyHats · Post by **TooManyHats** » Thu Feb 10, 2011 6:29 pm

Thank you for responding, Polly. Believe me, I won't be deciding anything. I don't know nearly enough about what I'm doing to even begin to think I could make a decision about anything to do with MC. That's why I posted this to ask.

Honestly, you said exactly what I was thinking. How could I possibly know what ALL those ingredients would do to my system? I just wanted confirmation of what I was already thinking. You all are the BEST!

Overall, I'm feeling frustrated because I'm eating such a small variety of things and still reacting. I've started a food journal and am now keeping track of what I eat. I'm getting very nervous because I'm very close to landing a full-time job and can't afford to be reacting to anything. I'm starting to wonder if I should consider medication. I don't have full blown D, I've been experiencing that soft pile that disappears into a cloud. That's enough to freak me out at this point. Haven't seen Norman since last week. At this point I'm wondering whether the "honeymoon period" after my colonoscopy is over and now I'm just back to dealing active MC.

Not sure what you mean by this:

Plus during the initial stages of MC, the inflamed gut can react to anything.

Do you mean that at this point (other than staying g/f, d/f, and s/f) it doesn't matter what I eat because I'll see a reaction? I can tell you that I can FEEL the inflammation. I feel a dull pain and/or burning sensation in my LLQ. I feel like I'm slowly rolling backwards down the hill. Am I not being realistic? Am I not giving the diet enough time to work? Am I just whining? I just don't know what to think.

JoAnn · Post by **JoAnn** » Thu Feb 10, 2011 8:00 pm

Hi Arlene, are you taking any meds for your mc? Diet is the most crucial of course, and as I looked at the products your dr recommended I know they can get pretty pricey. Have you done the Enterolab testing? If you're going to invest a lot of money, that's the first place I would put it. In my own journey I spent a few months on Asacol which made me even sicker. My GI then had me try the Pepto treatment which was not effective at all. I finally ended up on Entocort which has proven to be a miracle drug for me. I'm off from it now, but spent many months doing the diet along with it, got off for awhile, had a flare, and had to go back on. I've been off from it since last June and am managing with diet. When I first found this board, they recommended the Enterolab testing which was expensive, but so worth it. I would have never believed I was gluten, dairy, soy, and egg intolerant if I hadn't have had those tests. I grieved for awhile, but now my diet has become a part of me and I've found many substitutes and alternatives for things that it doesn't bother me that much. During the early months of my diagnosis, I had to take medical leave from my teaching job to try to sort things out. If I had of relied only on the doctors I had at that time, I would probably be on disability now and very sick. It was the wisdom of this board and finding an open minded integrative nurse practitioner that pulled me through things. Although my nurse practitioner in an integrative practitioner, she has never tried to sell me any expensive supplements. I take a multi-vitamin, vit D, calcium, fish oil, probiotics, zinc and bioidentical hormones. I take a few other supplements for other things, but they are all very affordable. I buy the Country Life brand online usually through Vita-cost. They are gf, df, sf-free of allergens. I also take B12, magnesium and folic acid injections once a week since absorption has been an issue for me. Entocort became very expensive, so when I used it I bought the generic Budez CR online through a Canadian pharmacy and the pharmacy mentioned on the board called AllDayChemist. You don't need a prescription through that one, and the generic worked just as well for me as the brand name. The only supplement my nurse practitioner recommended for at one time was D-Mannose, a very affordable product usually used for UTI. For some reason it really helped me and contributed to my healing. I know everyone has not had the results I had, but it is safe. I no longer use it because I don't need it. If you want to read a discussion on that, check out the following: http://www.perskyfarms.com/phpBB2/viewt ... t=dmannose
I just know that this journey is an individual thing and it takes tons of patience and experimenting. I know what Polly means when she says in the beginning you react to everything because of the inflammation. That's how I felt until I identified my intolerances, the big ones and then fine tuning. It takes months and it can take up to 2 years for your gut to heal. I've probably told you things you already know, but try to take a deep breath and know it's probably going to be a long haul. The help of this board will get you through the ups and downs and help you figure things out. Good luck, Love JoAnn

JoAnn · Post by **JoAnn** » Thu Feb 10, 2011 8:05 pm

http://www.perskyfarms.com/phpBB2/viewt ... t=dmannose

Sorry Arlene, but for some reason the link I gave you above didn't appear as a link. (I'm sure Tex knows what I did wrong

)

I also wanted to mention that I used Pepto Bismol and Immodium along with the diet and entocort whenever I felt like I had pain or needed help getting through things.
JoAnn

TooManyHats · Post by **TooManyHats** » Thu Feb 10, 2011 9:07 pm

Isn't Entocort pretty much just another form of Prednisone? I took Prenisone for a year when I was a kid and vowed never to put it in my mouth again as long as I live. I could show you my stretch marks to help explain why. I found it to be a pretty miserable medication. I can still remember what it was like to get up from the dinner table after a full meal and still feel exactly as hungry as when I sat down.

Gloria · Post by **Gloria** » Thu Feb 10, 2011 10:24 pm

No, Entocort is much easier on the body than Prednisone because it doesn't activate until it reaches the colon. Only a small amount passes to the rest of the body.

I took Prednisone years ago for an allergic reaction to an antibiotic. I hated every minute of being on it. I couldn't sleep and was jittery. My GI initially suggested Prednisone for my MC and I told him I didn't want to take it. Entocort is very easy on my body and I've never noticed any side effects. I've been on varying amounts of it for 3 1/2 years.

Gloria

Post by **tex** » Thu Feb 10, 2011 11:27 pm

JoAnn,

The reason your link didn't appear correctly, is because it has to have a blank space at each end of it, so that the browser knows where it starts and stops, in order to interpret it correctly.

Tex

JoAnn · Post by **JoAnn** » Fri Feb 11, 2011 12:02 am

Thanks Tex, I'll remember that.
JoAnn

ant · Post by **ant** » Fri Feb 11, 2011 12:12 am

Dear Arlene,

FWIW I am still on Entocort (now just one a day) and diet. I am working again and feel that without it I would not be able to.

Been on Entocort, and now the generic, for one and a half years (with a short 2 months off). I hope to try and get off the med again but will take it very slowly. For the first 6 months or so I could tell my gut was still very sensitive (inflamed) and when I had a business meeting (I was freelancing and not working all the time) took a couple of Imodium just to be sure.

Now, unless I have a flare, I feel safe at meetings. If I get a flare these days they seem to be shorter than before i.e. one to two days, before returning to "firmish or "norman". The last prolonged (over a week) fare was when I was off the Entocort for 2 months. It did not resolve until I went back on Entocort. Like JoAnn if I sense a flare coming (e.g. have bloating or a D bm) I take pepto bismuth and/or Imodium.

Best of luck in getting control of the MC. Ant