How to proceed...

[Carole]

I've been on Entocort for about 10 days now. What a difference! D finally stopped - last bout was last Sunday. Now, morning bm is a little the other way - some days that's all and i feel somewhat constipated, others i have an looser afternoon bm. Things are still in a state of flux i guess. So, here's question...i still have LOTS of gas and bloating, so am i right in assuming that in the beginning the E is just stopping the D and the inflammation is still there? if so, i'm thinking that it would probably be best not to try to venture too far from the diet that works - rice, bananas, and rice protein until EVERYTHING begins to calm down, right? i've been trying to expand foods since the D stopped but the gas and bloating just seem to increase with everything i add. The food diary really helps as has your board section on foods - i try the ones that should be least offensive, but to no avail. i just seem to do best on the rice etc. it just feels like i should keep trying to eat other things but doesn't work...what is your advice...(don't see dr until 17th of aug so haven't been able to ask them any questions - but i trust the experience of the board over the dr advice anyway!)
Carole

[tex]

Hi Carole,

It's good to hear that the Entocort is helping. While the corticosteroids are promoted as inflammation suppressing drugs, according to Dr. Fine's research, (based on actual examination of colonic biopsy samples), they will not totally control the inflammation caused by MC. That's why some/many people have to maintain diet control, as well. Everyone with MC has the inflammation, but Entocort can suppress it sufficiently that some people will no longer have clinical symptoms, while taking Entocort. The histological issues remain, however, (including some degree of inflammation), unless controlled by diet changes.

It takes months, and in some cases years, for the damage to the gut to completely heal. Until then, expect issues from eating certain foods. Everyone wants to get back to their normal life "right now", and that's certainly understandable, but with MC, that isn't likely to happen, (for a while, at least). It's a very persistent disease, in most cases, and it takes a while for our digestive systems to get back to "normal" We well never completely return to our original state, because certain genes are triggered, when the disease is initiated, and those genetic changes usually require certain concessions from us, for the rest of our lives - some much more than others, of course. We can get our life back, but there are usually a few strings attached.

Unless your doctor advised you to make dietary changes to control your symptoms, (which would be very unlikely, since most GI docs don't believe that diet has any effect on MC), it's unlikely that he or she will advise you to do anything other than to "eat whatever you want".

If I were in your shoes, I would keep doing what's working, for a while, to give your intestines some time to heal. I hope you continue to improve.

Tex

[ant]

Hi Carole

I am about seven week into taking Entocort. What you describe and what Tex says perfectly fits with my experience too. First the BMs got better. Gas and bloating even increased a bit and then that died down. Then I tried to eat a bit more normally and had a set back (still suffering a bit from that). The twin-track attack on MC using both medication and diet definitely makes most sense to me.

Why use one wheel if two are available...

All best Ant

[Carole]

Thanks so much for your speedy reply. Think i'll be following your advice and just sticking with the few things that are least offensive for a while (ie, today is not a good day - way too much cramping and gas and i'm not even sure what did it since the last time i strayed away from the diet was on Wednesday when i was feeling really good and so gave in and ate a fresh baked cookie - you'd think that would have affected me before this so maybe it's some other food that's been okay but has turned on me - who knows!) i really want the inflammation to subside sooner than later - having inflammatory arthritis i know how much damage continued inflammation can do. But how do you know how long to wait? is it just trial and error - like stay with it a couple of weeks then try something and if it doesn't work back off again? i really hate this - i can't keep weight on if i don't eat enough but i just get so sick of the few things that work! i'm only just beginning this journey and i'm already so frustrated i could scream - plus i'm so hungry i could eat the paint off the walls!
Carole
(PS - so far i've tried one health food store and 3 local grocerie stores and NO margarine that doesn't have soy)

[Gas Bag]

Thanks so much for your speedy reply. Think i'll be following your advice and just sticking with the few things that are least offensive for a while (ie, today is not a good day - way too much cramping and gas and i'm not even sure what did it since the last time i strayed away from the diet was on Wednesday when i was feeling really good and so gave in and ate a fresh baked cookie - you'd think that would have affected me before this so maybe it's some other food that's been okay but has turned on me - who knows!) i really want the inflammation to subside sooner than later - having inflammatory arthritis i know how much damage continued inflammation can do. But how do you know how long to wait? is it just trial and error - like stay with it a couple of weeks then try something and if it doesn't work back off again? i really hate this - i can't keep weight on if i don't eat enough but i just get so sick of the few things that work! i'm only just beginning this journey and i'm already so frustrated i could scream - plus i'm so hungry i could eat the paint off the walls!
Carole
(PS - so far i've tried one health food store and 3 local grocerie stores and NO margarine that doesn't have soy)

Mrs. Buttinski here. I see Dairy is an intolerance for you. It is with my mother as well but she can eat yogurt with no problems. I just wanted to tell you you sound like me, the bloating and cramping and rumbling. Probiotic yogurt has been a life saver for me. I certainly don't want to give you bad advice, but if you are able to try it it might help you alot.

[Lucy]

Margarine without casein has no taste, so why bother with it if you are also casein intolerant? We used to be able to get dairy free/casein free in the most inexpensive brands, but I think things have changed, particularly in terms of soy being in these.

Only thing the OK tasteless margarines were ever good for anyway was baking, but see if, for baking only, you couldn't just use a spread made from palm oil. I think Spectrum makes one. Perhaps one of the other group members would remember the specific name of that product and be able to tell you what to look for in terms of the container. Remember not to use it too often due to the type of fat in it, however. My sister has made several gf chocolate mixes using this, one of which we think was the Namaste chocolate brownie mix because it has the fewest substitutions to make. These are better than any brownies I've EVER eaten!!! Yummy! Be sure to make the right substitionsif you try these!

I use baked potatoes or rice in place of bread if I even use a starchy food, and on the potato, I just use a good EVOO and grind up some fresh rosemary over the open hot potato. Polly used to use clam juice (check that it's free of the wrong ingredients before you purchase). She used it to flavor her baked potatoes. Perhaps you could ask her if she's added any more ingredients to that since she first posted that idea on the old board. Guess it all depends on how much you like clam juice in the first place.

Another easy but good alternative is a good quality ketchup, like Muir Glenn.
I talked to a very nice lady via the 800 no. on the label, and she read me off the ingredients. The newer bottles' labels don't contain the word "natural flavor," but they ones with that on them never bothered me when I was most sensitive. I think they've been avoiding all the big antigens in their foods since before I went gf back in Nov. of 03. Believe me, if it had had ANY gluten in it, I would've known back then! This ketchup is very good, particularly since it doesn't contain corn syrup, so you should notice that you are getting more flavor. This is kind of like having French fries, only healthier. Hopefully, s & p doesn't bother you, but if it does upset your gut, cut down or cut out the pepper for a while.

Maybe someone else will have more suggestions. Don't forget to try cooking your rice in various stocks. Kitchen Basics makes a bunch of them -- their beef and chicken stocks are easier to find than their seafood stocks and ham and pork stocks. You can add some real flavor to things by using these. I find it much easier if I can find the 1 cup size containers as I can usually use the whole amount, thus don't have to use up space in the frig with the leftover stock. These come in colorful cartons, and are found at regular grocery stores.
You could also use these to pick up a nice stew or soup you might want to make yourself, particularly since fall is supposed to be here in a few months.

When you invent a new way to use some of those, be sure to drop back in and let us know how to duplicate it. We are always wanting new things to try around here.

Good luck!
Luce

[JLH]

http://www.earthbalancenatural.com/#/products/soy-free/

I like it. I was getting pretty tired of olive oil on everything. While it wasn't bad on potatoes, it wasn't great on rice.

My HF store ordered it for me. I pestered them so long that I may have even gotten it before Whole Foods (we don't have one).

[Gayle]

Hi Carole,

Probably I’m not the best person to reply to your dilemma here as I do not appear to have many of the food intolerance issues that so many of the folks here do have.

It sounds as though you respond to Entocort quickly ??? – and for that -- you can Thank Your Lucky Stars! I too respond to Entocort very quickly as compared to many of these folks – for which I am very grateful.

Within 5 –7 days of initiating Entocort therapy at 9 mg/day my lower gut activity has quieted markedly and by day 10 - 14 activity is back to – maybe somewhat loose – but pretty much once per day. Gradually the gasey issues tend to resolve and things progress until by about week 4 or 5 when things do not want to move at all, and I will go 4 – 5 days without eliminating if I don’t pay attention! This is not good either, and gets to be frustrating to say the least after all the D leading up to diagnosis of MC.

My method of dealing with this turn of events has been to VERY GRADUALLY add in some bulk, -- my chosen product has always happened to be Citrucel, but there are many things out there in that line for you to consider if you wish to give this a try.

Drs. seem to want patients on the Entocort at 9 mg/day for a period of time (usually 8 weeks) before cutting back, but possibly they may allow you to cut back just a little sooner since you responded so well and so quickly?? Can’t know that from here. I've found out by lots of questioning that they do sometimes tailor these things a bit if you keep an open dialogue.

All this is up to each individual to some degree, but remember you really do want to stay on the drug long enough to "get over a hump” so to speak before cutting back. And -- things do have to keep moving along also. Personally, at this point, I always feel as though I’m trying to tip-toe through a mine field.

I bet you will begin to notice a difference when your Entocort dose is eventually decreased.

Until then, do watch you diet being careful to avoid known triggers and irritants. Try to be patient and keep daily track of activity for your next Drs visit. And remember to continue to drink plenty of fluids making sure to keep yourself well hydrated, as that will help also.



Best of Luck,

Gayle

[Lucy]

Hi Joan,
Now you have my curiosity up. What do the brands of margarine without casein use to give them flavor? Maybe they keep that a secret! Ha!
Anyway, I'd love to know what they use to flavor it other than casein.
Yours, Luce

[JLH]

"Expeller-pressed natural oil blend (palm fruit, canola, safflower and olive) water, contains less than 2% salt, sunflower lecithin, pea protein, natural flavor (derived from corn, no msg, no alcohol, no gluten, lactic acid (non dairy source), naturally extracted annatto for color."

[Lucy]

Does it really taste like butter or at least a good margarine. Hey, I might even like it better! Can you use it to put on things like green beans when they are hot, etc.

This sounds promising.
Thanks, Luce

[JLH]

Yes and yes.

[RUBYREDDOG]

I agree with Joan, Earth Balance is quite good. However I like Ghee butter better. I use it on my cooked vegetables and on popcorn. Not as good as the "real thing" but close. YMMV

Hotrod

[Carole]

So Ghee is clarified butter - right? And you need to make it yourself as Gloria does?
Carole

[RUBYREDDOG]

If you have a Whole Foods store near you, you can find Ghee there. And possibly at other health food stores as well. I can't recall the name of the one I use but I will look tonight for the brand name.

Hotrod