PLEASE Help Get Me Re-Started

[TREESE]

Greetings, ALL - I haven't had a Flare-Up in 5 years. I forgot most of what I learned back in 2015 when I first found the forum. I had been eating pretty normally all foods, including dairy for the last 3 years now. The first 2 years, I stayed close to the GF diet I had been on. I need help beginning from scratch again, Please.

I have CC. I am in the process of having all the Tests ordered by my GI just like 5 years ago, but I already know that I have it from the last time. I am on Lialda 4 tabs and Budesonide all with breakfast. Of Little help. I'm down from 103lbs to 92lbs. And I'm 68 years old now.

How do I begin to adjust my diet to bring myself into remission again, please?

Was it Rice and Chicken alone? Or rice with banana? Or rice alone? I have chicken breast that I cooked in the oven. Did I have to boil it instead? I can't seem to think clearly right now. Did I have to eat GF bread, also? Eggs at the beginning? I didn't have any food allergies from my Entero Labs Tests 5 years ago.

Can I try Almond Milk in this phase or does that have to wait until the elimination diet? Must it be Unsweetened?

I do have a Dietician, but all of her suggestions have not helped.

Just get me started, PLease.

Thank you so much,
TREESE

[tex]

Hi Treese,

Try turkey or lamb, instead of chicken, because some of us react to chicken. A few of us are sensitive to rice, but most of us can handle it OK. Bananas are OK, if they're just barely ripe. If they're overripe, they may cuse histamine problems. Try to do without eggs while you're recovering. If you have to have eggs, use duck eggs (or quail or turkey eggs).

Potatoes or sweet potatoes should be OK.

Almond milk should be OK. I can't stand to use the unsweetened version or the original version. I always buy the vanilla version.

You might find some useful suggestions in the long thread at the link below:

Suggested Eating Plan - Stage ONE

I hope this will get you started. Please ask if you have any questions.

Tex

[TREESE]

Hi, Tex!

I have Organic Rice Dream Original at my local store. Also Temp Hemp Milk. Do you think I could start with those? Does it matter it they are Un-sweetend or Vanilla as far as CC is concerned? Or is that just a matter of taste?

And are Overcooked Carrots ok at the beginning in addition to sweet potatoes? Or do I choose one only?

No duck eggs here in my area of New York. I do like eggs but I can wait if I need to.

What about GF Bread? I don't bake. I have some GF Breads at my local stores. I am such a bread person. Is that ok?

Thank You, Tex!

[brandy]

Do you have active WD?

If so I'd avoid GF bread for now and stick with things without an ingredient list: potato, rice or sweet potato

I could not tolerate the alternative milks while I had WD.

Once I got solid stool I could tolerate replacement milk. Look for one with the least amount of chemical ingredients.
Look for one lower in sugar.

Many of the replacement milks are not calcium fortified. Read the labels if you want calcium.


*****I believe some of the rice replacement milks have low levels of gluten. They are still "gluten free" as the level
is lower than that allowed in the US.

[tex]

Treese,

My preferences were based strictly on taste. I forgot to mention the GF bread, but I agree with Brandy, that it should be avoided while you're still recovering. Ditto on the Rice Milk. It's fermented with barley. They claim that the barley is all removed before the product is ready for sale, but as Brandy points out, even though it passes GF certification requirements, it still contains small amounts of barley proteins, so it should be avoided while recovering. If you use any milk substitutes, look in the refrigerated section of the store for them. But again, as Brandy says, it's safer to wait until you're in remission before using them.

Tex

[TREESE]

Thank You So Much Brandy and Tex for that Information!

So, what do I drink while in recovery? All I am drinking is...
Water
Pedialyte (so I don't de-hydrate - I'm 68)
Chamomile Tea (Which I find gross - I miss terribly my one cup of coffee a day )

And all I am eating is white rice and chicken.

Also - My stool is starting to form, but there is a lot of WHITE in it. Never saw that before. Any idea what that means???

Please Reply when you have a moment. My Sincere Thanks!
TREESE

[tex]

By "WHITE", you're probably referring to mucus, which the body produces naturally to protect the lining of the intestines. Normally, we don't notice it. But when the intestines are inflamed, the body produces copious amounts of mucus. It will resolve when you stop the inflammation.

When we're in recovery, our food is our medicine. What did our paleo ancestors drink? Water is by far the most efficient (and the safest) way to maintain hydration while we recover. You might be able to tolerate coffee. But why risk it when that may interfere with recovery. It will be much easier to tolerate coffee (or other drinks) after you reach remission and your gut begins to heal, again. At least, that's my opinion.

Tex

[TREESE]

Thank you for that last post, Tex! Water it is! And thanks for the "other" thing I asked you about, also.

May I ask your or anyone's opinion on Budesonide? I am on Budesonide 3mg, 3pills with breakfast. First time ever. It's nearing 6 weeks already. My bowels are forming stool again, but sometimes soft. How long do I have to stay on this Medicine? Not a big fan of Medicine. (I am only eating chicken and rice)

Also - If I decided to go for Entero Lab testing, How would they get good results from my stool tests if all I am eating is chicken and rice? Don't I need to have the offending foods in my body for them to test?

See how much I have forgotten? Sorry...

Thanks and Hope to hear from someone soon, please!
TREESE

[tex]

It normally takes only a couple of weeks or less for budesonide to work. You may have a high stress level that's preventing it from working normally, or a cross-contaminated diet. Stress causes inflammation. We have to learn to relax, in order to keep this disease under control. Another possibility is that budesonide is just not very effective for you.

The budesonide dose will have to be tapered slowly, after your symptoms are gone. IOW, you will probably need to take it for at least several months as you slowly reduce the dose, but you can't begin to reduce the dose until after your diarrhea is under control.

Your current diet won't affect your EnteroLab results nearly as much as budesonide. After a few months, it will begin to mask food sensitivities, because it will begin to suppress your immune system, and therefore your ability to produce antibodies so that you won't be able to respond normally to the food sensitivities in the test. If you order a test promptly, you might still be able to get accurate test results, but if you wait much longer the tests will begin to fail to detect sensitivities to certain foods because of the budesonide.

Tex

[TREESE]

OH YES....Stress Big Time! I am Very stressed over all of this recurring after so many years. I didn't even keep my Notes on how I dealt with it back then. I thought it was gone for good.

I have a Colonoscopy coming up and a CT Scan on my abdomen. My GI wants to see if my intestine is still showing the CC from 5 years ago when I first got it. I guess that's the normal procedure. I really don't know.

I'm leaning toward ordering the Entero Labs Testing today, however. I think I personally would feel better if I did.

Thank You, Tex! Your guidance and extensive knowledge is greatly appreciated!
TREESE

[brandy]

Treese,

If you don't like taking meds you might talk to your doc about discontinuing the Lialda. It is rarely prescribed, helps a few
but also makes MC worse sometimes.

Generally budesonide is prescribed as a stand alone med.

Also I want to commend you on your bravery. Most of our members probably would not admit they went back to eating normally.

It is threads like yours that really helped me early on as it made me realize MC and MC management is a life time thing.

You will get through this. I've had one reflare mostly due to stress and eating too much processed GF chips etc.

[TREESE]

Hi, Tex - Sorry for the delayed response. Haven't been feeling too well.

Thank you for your encouragement!

You mentioned stopping Lialda. Is that hard to do? Does that require a weaning off period like the Budesonide does?

He recently (maybe 2 months ago) upped me to 4 Lialda tabs from my ordinary 2. Then when that didn't work, he added the Budesonide and said that when it came time to wean me off the Budesonide, the Lialda would make that process easier.

Any thoughts on this process?

Thank You!

Blessings - TREESE

[tex]

Your doctor is naive. He arbitrarily decided that every medication that he prescribes works for every patient. That simply isn't true. The problem with taking two or more medications at the same time is that if one is helping, and the other is just making your symptoms worse, it's impossible to tell which one is helping and which one is just preventing the other from working well. Either one (or both) might be causing problems that the other cannot overcome. At least, that's my opinion.

The reason we have to wean steroid doses is because steroids suppress adrenal production of cortisol. If we stop using a steroid abruptly, our adrenals are unable to recover normal cortisol production fast enough, and that will often cause severe steroid withdrawal symptoms such as fatigue, loss of strength, aches, joint pain, nausea, etc. If we wean the steroid dose slowly, as we end a steroid treatment, our adrenals will have time to slowly increase cortisol production, and they will eventually reach a normal production level, thus preventing a system crisis.

Lialda is mesalamine, which is not a steroid, so it's not necessary to wean the dose when ending a treatment with Lialda.

Tex

[TREESE]

Hello again, TEX

Your knowledge always amazes me! If only my GI spoke as clearly and took the time to explain things as you do.

Here's a bit of news. I called to Order the Entero Labs Tests and spoke to a young man there who said they are moving Nov 1st and that Samples had to be in by Oct 15, to avoid being caught in the shuffle I guess. I don't know if I can get it all done by then. Also that they had switched to Fed Ex from UPS. I get emails often from Fed Ex telling me of shipping delays due to severe storms your way this time of year. I'm in New York. Since the Samples are time-sensitive, I just might wait until they are settled in their new place before I do the testing.

Any thoughts?
TREESE

[tex]

Hi Treese,

Regarding the usual brevity of information offered by doctors, my guess is that this practice saves them a lot of time, in the long run, and time is money, especially when schedules are tight. Another possibility is that they may not want to give away certain trade secrets. Since I don't get paid for the details I offer, and I'm retired, so I have the time, I believe that the more details patients know about their situation, the more likely that they will be able to make more informed decisions, and the better they will be able to manage their long-term health.

In my own recent experience, UPS seems to have become much more unreliable with deliveries than they used to be. I get much better service from Fed Ex these days.

Also, I wouldn't worry much about shipping delays. We have a member in Hong Kong who sent in a sample and it got hung in U. S. Customs in Alaska for several days, during which time the sample is bound to have thawed. When EntroLab finally received it, they were able to do the testing just fine. This happened a number of years ago. I suspect that the overnight shipping requirement is simply so that the sample won't thaw, and smell to high heaven before it's delivered. A delay will not affect the accuracy of the test results. After all, these samples are nothing but waste material in the first place, and it's rather difficult to bungle a trainwreck. At least, that's my impression, based on the evidence.

Tex