Hello: New to the forum!

[tex]

Good luck with your treatment program, and please keep us updated on your progress.

Tex

[gowest]

Hey everyone,

Your advice worked! I've been eating white rice, ripe bananas, peeled and well-cooked zucchini, grilled/sauteed asparagus, scrambled and hard boiled eggs, and lean meats/seafood. Together with the return to 9mg/day of Entocort, I've been having one or two (usually just one, unless I have a meeting or something at work and get nervous) mostly formed BMs a day this week! I've started introducing strawberries in the form of a well-cooked puree (they've been too hard to resist at the farmers' market!) and I seem to be okay with that. I use a little olive oil in my rice since I'm not eating dairy. I'm even going to start reducing the Imodium to half a pill per day, since some days (like today) I don't have a BM at all and feel a little constipated (huh?!?!?! Never had that in recent memory...)

A couple of times I had a few strips of bacon and within an hour or two I had a fatty BM, so I know I'm not digesting fats well. Sorry to be gross, but I'm assuming a "fatty BM" is when there are mucousy strings that look like sausage casing??

Thanks everyone for your help. I'll continue to scour the boards for good ideas. :o)

[tex]

Hi,

It sounds as though you're coming along pretty well - you seem to be on the right track.

Actually, steatorrhea, (fat in the stool), usually shows up as clumps, or particles, with iridescent colors radiating outwardly from them, (IOW, they look like greasy spots floating on water). What you describe, ("mucousy strings that look like sausage casing"), sounds more like mucus. When the intestines are significantly inflamed, or irritated, they will produce copious quantities of mucus, in order to try to protect the surface of the mucosa from further irritation.

Thanks for the update,
Tex

[gowest]

Oh, well hmph. Just when I thought I had it figured out. ;o)

So might the bacon just have been a coincidence? Actually the first time I had the mucusy stools was after a breakfast buffet where I had 6 scrambled eggs in olive oil and about 10 strips of bacon. :o/ Looking at my food journal, the night before, I had prime rib and a baked potato (one of those two made my insides burn a little) -- and those were the only "different" things I had that day.

I guess more experience will help me at the "what was THAT from?!" guessing game... LOL

Thanks Tex!

[Joefnh]

Gowest I have noticed similar problems with fattier foods and have to be careful and trim any excess off of meats etc. I am finding that figuring out the tolerated foods issue is a tough process of elimination. I need to keep a lab notebook with me to track the results.


--Joe

[tex]

It's tough to judge the bacon, but I think that most of us can handle bacon without any major issues. Many of us avoid it, however, because of the preservatives, (I assume).

Trying to connect meals to BMs, is usually kind of tricky. Eating can often trigger a BM, but the content was probably originally ingested during a previous meal. Trying to figure out which one, can be an art.

A number of us react to beef - usually not an all-out reaction, just certain symptoms. In my case, for example, I get a little bloating, and the accompanying abdominal discomfort. About half a day later, I will develop a stiff neck, and upper back/shoulder pain, and maybe a "mild" headache. No D, but I never paid any attention as to whether or not any mucus might be present.

Tex

[gowest]

Interesting... I'll start paying more attention to what happens when I eat beef. I have noticed symptoms (ab cramping, gas, etc.) when I eat ground pork and was assuming it was from the amount of fat (I was frying it in a skillet). I haven't eaten ground pork or ground beef in a while, though, as I'm trying to stick to chicken and fish.

Thanks guys. :o)

[JLH]

There is a GF, DF and SF margarine named Earth Balance that is now at Wal-Mart. It is around $2 cheaper there than my health food store.

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

Thanks to Dee for telling us about it.

[Rosie]

Joan, unfortunately that soy-free Earth Balance contains pea protein, so for those of us avoiding legumes in addition to soy, it won't work. I use ghee, basically just the fat from cow's milk without any of the protein, so it's casein-free. It has a nice buttery taste and works well in cooking, but is rock-hard to spread......

Rosie

[tex]

The problem with ghee, is that the precipitated casein is filtered out by means of cheesecloth, or something similar - obviously, this is not adequate for the complete removal of tiny particles - meaning that we have to hope that no tiny particles result from the precipitation process). Quite a few of us do react adversely to ghee, presumably because of that filtration problem. It is also true, though, that some of us are able to tolerate it quite well.

IOW, virtually nothing is entirely without risk, and often, with some food items, whether or not we react, may depend on our luck of the draw, on that particular day.

Tex

[Gloria]

If you purchase ghee, it must have all the casein removed or it will spoil because it sits unrefrigerated on a shelf. So it's pretty safe to assume that it is completely removed.

For straining homemade ghee: cheesecloth is pretty porous, paper towels are messy. I've discovered that using pellon, which is polyester interfacing available in any fabric store, does the job without a mess and removes all of the visible particles.

The butter must be heated long enough to cook the casien so that it turns into a crust on the top layer and medium-brown granules on the bottom of the pan. If cooked properly the likelihood of those hardened particles getting through the pellon is pretty remote, in my experience.

Here is a link to making your own ghee: http://www.perskyfarms.com/phpBB2/viewt ... 0266#70266

Everyone is different, however, and some may react to ghee. There are no other butter/margarine alternatives for those of us intolerant to legumes except coconut or palm shortening. I have used a combination of ghee and Spectrum shortening (palm) in place of butter or margarine when I've baked.

Gloria

[rbks321]

It's been pretty close to one year since I met my GI doc and we started on this path of trying to figure out was wrong me. Call me naive, but I truly believed that once I was diagnosed (and it wasn't ALL in my head) that I would start feeling better.

Yesterday was horrible. I have not been feeling well the last few days, some D but losts of aches and pains. My stomach hurt so bad. I feel like a whiner.

I went to a meeting at work yesterday afternoon. It was a co-workers birthday, so there were some munchies and cake and icecream. I passed on everything. I didn't feel like eating, and I was quite frankly concerned about what to eat.

IOW, virtually nothing is entirely without risk, and often, with some food items, whether or not we react, may depend on our luck of the draw, on that particular day.

As Tex said, it depends. So, my lovely co-workers were asking me (as I passed on everything) whether or not I could eat such and such. I was getting frustrated, but it does depend on the day and the "luck of the draw".

After the meeting, I left and came home. I was feeling depressed and having my own little pity party. I just tried to go to sleep.

Woke up this morning doing what I can to be in a good mood and enjoy this holiday weekend with my family.

My teenage son says to me, "Aren't you paying this specialist to help you feel better?". I'm sure he meant this in the best of ways, but others just don't get it!

I've been on Entocort for almost four months, I believe. My memory has gone to the shitter lately too. I'm done. I've tried to taper off of it twice. After about 4-5 days, symptoms hit me hard. There's no real warning.

I may be in denial. I just want to be gluten free and get on with my life. Ha! Ha!
I think I may need to do something different. There is most definetly wonderful advice and info on this site, but I do realize that everyone is different and we all need to find our own way. Before anyone suggests it, I can not afford Enterolab testing, my Rx cost is killing me! I already asked my GI Dr. about possibly getting my insurance to cover it. He does not believe that it is legitimate or that diet, excuse me, he said cut out dairy, coffee, spicy, and fatty foods, has an effect on my well being. Does he really care about that, is my question?

Happy Anniversary, MC. It's been fun, now go away!

-Rebecca

[Gloria]

Hi Rebecca,

I'm so sorry that you are feeling discouraged and frustrated. I can understand because I just recently was feeling the same way. We want this MC to just disappear, and we want to wake up from this nightmare. That's how I felt, too. I had been taking the full dosage of Entocort for 3 months and still hadn't gotten relief from the D.

It's unfortunate that you can't afford the Enterolab testing because that is an excellent starting point for determining which foods to eliminate. However, in many of our cases, it isn't the finishing point and we have to fine-tune our diet further.

You didn't say how much or how quickly you've tried to taper off Entocort. I have found that it's better to drop one pill every other day first. In other words take 2 pills one day, back up to 3 pills the next, etc. If you start having problems, then you know that you need to fine-tune your diet before you reduce further. I've always seen Entocort as my partner in determining my food intolerances. If the goal is to get off of it, then we need to get to a level where we are reacting some, but not all of the time so that we can figure out additional intolerances.

It isn't easy, especially when you have multiple intolerances, and it isn't a quick road to success for many of us, but it is possible to eventually get better.

Gloria

[Gabes-Apg]

i dont tolerate bacon very well, it is a weekend treat food.

stick with the easy to digest bland type meals as much as possible, it gives your body to recover, be patient dont try and progress too quickly.
other than my recent trip, i have been eating the same 4 vegetables, rice and stewed meat ( mostly lamb) for 9 weeks or more, and am back onto the same foods, same style now that i am back home

i find that having easy to digest meals means that i dont get too tired and have better quality sleep. doing the cook up for the week means that no matter what happens i have my meals (i live alone and have days where i work 10 - 12 hours)
it is very important for the digestion process and to our mental well being not to stress about meals and eating. the body has to be relaxed and be looking forward to the meal for the digestion process to work properly (from mouth to poop)

good luck with the maze of finding what works for you!

take care

[tex]

stick with the easy to digest bland type meals as much as possible, it gives your body to recover, be patient dont try and progress too quickly.
other than my recent trip, i have been eating the same 4 vegetables, rice and stewed meat ( mostly lamb) for 9 weeks or more, and am back onto the same foods, same style now that i am back home

Excellent, excellent, excellent advice. Each of us has our own unique combination of bacteria, yeast, etc., growing in our intestines. True, they're parasites, but they're much more than that - many of them are symbiotic, meaning that we derive benefits from their presence. They help us to digest our food, (by facilitating certain stages in the digestive process that our system cannot easily handle without them, especially for certain foods), and they help to make certain nutrients more available and more easily absorbed These are commonly referred to as our "good" bacteria, (as opposed to the "bad" bacteria, which not only provide no benefits, but may produce toxins that make us ill). Presumably, there are even more bacteria who are simply "freeloaders", providing no symbiotic benefits, (as far as the digestive process is concerned), but doing no harm, either. We never hear much about those, but I would venture to guess that they probably vastly outnumber the other types, (simply based on the laws of statistics and probabilities). But even the "freeloaders" serve a useful purpose - they latch onto the interior surface of our intestines, and "park", thus making those "parking places" unavailable for any of the bad bacteria, who are drifting through, and looking for a place where they can settle down, and establish a base camp.

Anyway, the point I was trying to make, is that our diet determines the demographics of our intestinal bacteria population, especially the symbiotic species. Every food has it's own set of bacteria "groupies", so to speak. That is, for every food, there is a unique species of bacteria, (or maybe several species), that is/are best suited to enhance the digestive process for that particular food. If we have an adequate supply of those bacteria in the proper place in our gut, then, (unless something else is seriously amiss), our digestive system will do a superb job of digesting that particular food, and we will thrive on it. Without those bacteria, we will still be able to digest the food, but it will be more difficult, and it will probably be incomplete, so that there will be undigested peptides that pass through into the colon, where they may be digested by fermentation, (by other bacteria), causing bloating, gas, and possibly cramps. The biggest risk is that some of those peptides may be absorbed into the blood stream, if the leaky gut syndrome is present, (with or without MC), and the result will be joint and muscle aches, headaches, stiffness, etc.

It takes weeks, (or longer), for bacteria populations to reach a stable state of equilibrium, so if we eat an erratic diet, our bacteria population may never actually stabilize, but will be constantly changing, and the number of bacterial species may be huge, (rather than just a few species, optimized for a limited diet). As long as the population demographics are constantly changing, we cannot have optimum digestion. Therefore, ideally, (from an optimum digestion viewpoint), our goal should be to settle on a diet that we can tolerate, and stick with it, so that our symbiotic bacteria can reach a stable population level, and thereby provide the most benefits for us. For one bacteria species to thrive, another species must be suppressed, (because parking space is definitely limited), so if we are all over the place with our food choices, (eating off a different menu every day), then we will have a bacteria population that is suitable for a wide variety of food, but it cannot be uniquely effective at digesting any particular type of food. This is fine for someone with a "normal" digestive system, but we no longer have a normal digestive system, and when MC is active, we need all the help we can get, to digest our food effectively and efficiently. That's why I agree with Gabes that we are much better off if we stick with a limited selection of food, that we can "safely" handle, and eat that same food every day, until our gut heals.

it is very important for the digestion process and to our mental well being not to stress about meals and eating. the body has to be relaxed and be looking forward to the meal for the digestion process to work properly (from mouth to poop)

I don't recall this ever coming up before, but again, I agree completely with Gabes, that attitude matters, in eating, (and in everything, as far as that goes). Attitude, (and especially the perceived stress level), makes a huge difference on the production of hormones and certain other aspects of body chemistry. If that chemistry is corrupted sufficiently, we are licked before we start, and digestion is bound to suffer. For example, to illustrate what she is saying - just thinking about the food that we are about to eat, initiates the production of increased saliva, which is designed to coat the food while it is still in the mouth, to begin the process of breaking down the food, making it easier to swallow, etc., and to trigger the production of additional digestive fluids, further down the line. Saliva also has a mild "antibiotic" effect, to help control certain types of bacteria, which is then further enhanced by the increased production of stomach acid.

If we're in the wrong frame of mind, and worrying about running to the bathroom, instead of thinking about eating, for example, then instead of producing saliva, we will be producing adrenaline, and adrenaline causes dry-mouth - just the opposite of what we should be experiencing. As a result, good digestion is doomed before we start, and we will experience a self-fulfilling prophecy - we will probably have to run to the bathroom, soon after eating, because our GI tract will be in "fast-transit" mode, due to poor digestion, caused by the adrenaline.

At least that's how I see it.

Tex