Feeling Lost & Confused

[Gabes-Apg]

Re Digestive Enzymes
I am not a nutrition or digestion expert, but based on 10 years of what I have read, learnt and seen here from members inputs.

For now, I would wait. the key part to having effective digestion is lowered inflammation, and the cells of the body having the right nutrients etc.
Enzymes wont fix these issues. but as you have seen over the past week with the small changes you have made, improvements are starting to come.
the other thing that we have learnt when MC is active, less is more. too many changes, too many supplements dont work when you are in major flare. you have to reduce triggers as much as possible (which you are doing) your body needs essentials like Vit D3 and magnesium to heal from the years of inflammation.
for now I encourage you to stop looking for solutions, let the changes you have made/are making, the Vit D3 and magnesium and the eating plan changes time to work. let things like the cholestryamine take away the intensity of WD/multiple toilet trips etc. Dont make any other changes for at least 4 weeks
read, relax, be at peace you are on the right path. there is no quick fix to these issues.

hope this helps

PS - i uploaded some more bird photos last night

[Rebecca2z]

Thank You Ms. Gabes ! Good sound and practical advise - which I will apply.

I want to say I haven't started the cholestryamine. There are a couple of reasons, the most important reason being what I write about below *** and second I thought I could do this without drugs, and since I am seeing less frequency I thought that maybe I would begin to see improvements in the WD.

This probably TMI, but the WD is now very strange as this morning, it looks like plant material, all lacy and white stingy. But it looks like plants. I am on a 14 day IV of a potent fungal drug called Micafungin.

I am infusing this as I write this. (It is an amazing little device that infuses it, it's a round ball- balloon looking thing, ( called the Eclipse) it has tubing that comes out of the balloon and I hook it up to my picc line. It takes an hour to infuse.)

Anyway this is a drastic treatment and one I have done before, it is based on cultures taken from my body, rectum, nasal and deep in throat area. They grab what they can and grow it in a petri dish and make some kind of count per something or another... Then they identify what species if they can and I end up on this IV treatment. I haven't done this treatment for about 5 years even though we always see fungus in mouth & throat. ( I have a 2nd genetic condition, called APECED, dx with DNA tests )

***So now I am in a die off period and it is showing in my stool. I have been feeling at an instinctual level that the cholestryamine wouldn't be good right now as my body desperately needs to move this bowel stuff out.

So there is a lot of going on with my body right now and I believe you are so spot on with slow down on trying to correct everything at once. What what I do without you - keep me reining me in !!

Thank You !
HEY MY BOOKS ARRIVED ~ hubby just brought them to me, see Amazon delivers on a Sunday TEX ! Best books I ever bought !!

OH I just saw you said you loaded more birds... making a b-line right over there.... thank you !

[Gabes-Apg]

Rebecca
you might be interested that cholestryamine is a common treatment protocol for biotoxins - fungus, mould, etc etc

the stringy white stuff is mucus, big indicator of inflammation and it may also be the outcome of your current cleansing treatment.

enjoy the books

[Rebecca2z]

OH yes I am interested in knowing that !! You bet !! WOW it is a treatment protocol for biotoxins- fantastic....... ok so maybe I should take it. You, like Tex know so much and your willingness to share is exceptional.

~ But what if it blocks that horrid stuff from coming out?
This plant like material would not feel good to have it stored up, it is bulky. I was so uncomfortable all night and kept telling my husband this is the most full I have ever ever felt. The pain was much better after I got it out.

P.S.
I loved you photo's , I am grateful you took the time to share. Thank You ! I encourage every one to go have a look at the stunning & unique birds Gabes shared today from her beautiful Australia.

[Rebecca2z]

<<<< LOOK, one of my Adélie Penguin's turned blue, a juvenile no doubt ! Make that a fledgling !!

[Gabes-Apg]

you are progressing little penguin!

here is the link to the post about cholestryamine and clearing toxins etc

http://perskyfarms.com/phpBB2/viewtopic ... t=biotoxin

my understanding is that cholestryamine does not block, it is binds to toxins to help the body clear them

[Rebecca2z]

LOL, I do feel like I am progressing thanks to all of you !

I read the link, and thank you and SO I am all over it !! Anything to get the fungus to back down, I am also on a fungal drug called itraconazole, it is very hard for me to swallow but my immune doc wants me to take it twice day along with the IV infusion. He is going after this crap once and for all. With the cholestryamine on board and I should be doing pretty good. "Takes time Go Slow" a little birdie told me ;)

[Rebecca2z]

Great book Microscopic Colitis by Wayne Persky, I am finally on Chapter 6, right where it gets good, "Using diet changes to treat
microscopic colitis"

Excellent read !
So greatful to have a book explaining it all. I can't even imagine NOT having this info.

[Ann52]

I live in Miami that has total summer sunshine most of the year. I only take 1800 IU D-3 per day as I am in the sun all year round. Do I need to take more to increase my difency?

[Gabes-Apg]

Ann
even though you are having the time in a good sunny environment, you may still not be getting enough usable Vit D3 in your body due to:-
- as we age, the bodies ability to convert sunshine into usable Vit D3 is reduced
- if we are deficient in other nutrients (ie magnesium) the conversion process may not be as effective
- washing the skin with soap within 12 -24 hours of exposure can also affect the conversion process.

as to whether you need to increase supplementation, this depends, on what you current blood test result is, and how much inflammation you have in your body ie how much Vit D3 you are using per day.

Best way to know if you need to adjust supplementation levels is to check blood test result. If you doctor will not order the test for you, you can do it yourself via the Vit D council for about ? $65 USD (I cant remember the USD $ amount for the pricing but it around this amount)

another layer of possible complexity for some people is that you can have gene SNP (mutation) that causes the body to use more Vit D3 than other people. that is why it is best to gauge supplementation amounts on your individual situation.

[Ann52]

Thanks Gabes. All this is new to me Hpoefully I will find my way to recovery. See my GI tomorrow. Hope to get off the Budesadine.

[tex]

It is has been almost a week off gluten. Can it really be that ? If so I think we should all go back to being hunter/gatherers - this whole planet would be better off.

No, no! Please don't promote that. The main reason why agriculture was invented at the beginning of the neolithic period was because there was no longer sufficient wildlife and forage plants available on the planet to support the growing human population. And that was a small fraction of today's population. The advent of agriculture was indeed the reason why human health took such a serious hit at that point of our evolution. This is the reason why the world governments tell us over and over again about how healthy grain is for us — it's the only way everyone can access enough food to keep their bellies full. It's the only way the planet can sustain our population level. It's OK to sneak off and follow a hunter/gatherer lifestyle, just don't try to encourage everyone to do that or we'll all starve.

Hello !
I am very interested in starting a Digestive Enzyme ASAP. I am not entirely sure of what I am suppose to be looking for.

I read about digestive enzyme formulas and proteolytic enzyme formulas. I sure could use some guidance on this, I am especially confused if a person needs a digestive enzyme & a proteolytic enzyme. So two different pills, one before a meal and one after?

This company Baseline Nutritionals has something that maybe ok but it has minute traces of gluten left from the original malt.

Those of you in the 'know' can you help ?

Please remember that treatments that work just fine for "normal" people, or even for people who have other IBDs, don't always work so well for MC patients. Some people here have claimed that enzymes have helped their recovery. Here is my own experience:

Back when I was still recovering, I decided to "speed things along" by taking an expensive blend of digestive enzymes. I took the first capsule before eating breakfast one day, and within half an hour, I realized my mistake. Within 2 hours, I had projectile vomiting, and after that I vomited again every few hours for the rest of the day (except that after about the second time, I had nothing left to vomit up, so I had the dry heaves. ). My stomach felt as if it were on fire. After about a day or a day and a half, I was able to eat a little broth (and keep it down), and the following day I could eat soup. It took four days for the fire to go out, so that I was able to get up the nerve to try some solid food. So that's why I'm not a fan of digestive enzymes as part of the treatment for MC. YMMV, of course, since we are all different.

HEY MY BOOKS ARRIVED ~ hubby just brought them to me, see Amazon delivers on a Sunday TEX ! Best books I ever bought !!

Apparently then, not living out in the boondocks does have some advantages that I have been overlooking. It costs an arm and a leg to get a Saturday delivery here (except for Amazon Prime purchases). Sunday deliveries are not an option.

Regarding taking cholestyramine while taking other medications: FWIW, I don't believe I would attempt to use cholestyramine while using picc line infusion, because of the long times involved. If the cholestyramine is taken within about 4 hours prior to the ingestion of any food, medications, supplements, or whatever, it will sequester some/all of it. And it can have some effect out to about 6 hours. For "normal" people, cholestyramine can be taken about 2 hours after eating or taking a medication, but with compromised motility that won't work for you. The cholestyramine would almost surely steal your nutrients and most medications.

Published research exists to prove that one can take cholestyramine with meals and the med will lower cholesterol levels as claimed. But that particular research ignored the effects on nutrients and other medications. Apparently those researchers didn't have much to do.

Tex

[Rebecca2z]

Ok I hear you Tex, we can't have starving people ! I don't think we need to worry about taking the planet with us to the hunter/gatherer lifestyle, as my husband says it's too late to turn back from agriculture.

I am learning so much from reading your book Tex, so well put together. I am on pg 149. Your book should be required reading by every GI doc in the world as well as students.

I am interested in the testing you write about, at EnteroLab, I wrote them a couple of days ago inquiring if I would be able to get accurate test results being as I am on IVIG. I haven't heard back. ( I read something on this forum making reference to this company)

Thank you for sharing your journey with digestive enzymes, and I value your knowledge and experience in this area. Frees me up to think about the next thing I want to try... LOL

That sounds awful what you went through.

Appreciate your info on cholestyramine, I sure can't afford to loose any nutrients and medications. my TPN feeding tube line goes into my blood as my gut doesn't work well. I am on so many fungal things right now, the IV fungal medication is potent- I can feel some major die off, I can't think clearly and almost feel high or drunk. My color isn't looking to good tonight, I am very gray colored. So I see Gabes is right on about slow down and not try to do too many changes at once.

At this point I am not having any gluten or dairy and I am doing the ancient mineral spray and foot soaks. I get vitamins in 2 little bottles I add to the TPN bag and these go right into my blood stream so my gut doesn't have to deal with them directly. Tomorrow or Tuesday I get my liquid Vitamin D and will that start that. That's probably enough for now.

I am anxious to start your next book Vitamin D I am very interested in learning all about this. My levels were 9 and now they are 25 and I haven't been able to get them any higher. Hopefully you will have some tips in your book that will help me raise my levels.

6 Months ( as of a couple of days ago) having WD, sucked the life out of me, and as you mentioned in your book, I don't see how GI doctors can't see the dangers of MC especially in people who are already in a wasted state. Mind boggling.....

Thanks so much !

[tex]

Rebecca,

Theoretically, thinking about this, with IV feeding, cholestyramine should have a negligible effect on the nutrients or medications in your bloodstream (because it can't get to them – it stays in the gut). So it can only affect food/chyme in your gut.

But another thing about cholestyramine that concerns me is the fact that with such a small volume of food going through your digestive system, who knows what the correct dose should be? The labeled dose is for a "normal" person of average weight, eating a normal volume of food (not using IV feeding). I'm having a tough time visualizing how it will help.

Are those vitamins you mentioned labeled as safe to be added to a TPN bag (or approved by your doctor for such use)?

You're most welcome.

Tex

[Rebecca2z]

Thank You Tex for taking a look at my situation. Yes the two small and I mean tiny bottles of vitamins come from the place that makes up the TPN. So they are just for TPN. One would have to be careful about putting only sterile things in my access line.
YOU are having a hard time visualizing ....I am having a VERY hard time visualizing how I get out of this mess I am in.
But I guess if I was to visualize anything in regards to the cholestyramine it would be to have it stop the WD.

I was wondering like how does it work when a person is eating NOTHING and they still are having many trips to the bathroom?
I know the body will make waste even when being fed through the blood, I was on TPN for 2 years and I had C on it the whole time. So the body for sure makes waste.

I am thinking the 8 corn chex I eat are an issue, they go right through me. I have had no gluten or dairy. I have had only white jasmine rice ( 2 Tablespoons each day) and a piece of white meat chicken the size of my thumb, finely chopped up. and I have had 1 finely chopped up shrimp. That's it all of last week. Not even a 200 calories for a whole day. ( I am alive because I have TPN crap going in my blood stream )

Well this is certainly one fine fix I am in this time and what a roller coaster ride. One day I dare hope and the next day I am thinking that's it I am done. Ripping the feeding tube out is looking pretty good right about now.

I loved your book and find myself feeling so happy that all the people who have MC and all the ones in the future who find it part of their lives will have your amazing hard work to help see them through. What a gift ! You should be charging us for consulting on all this !

Makes me mad when I think of your analogy - GI doctors drive around us "like a pothole in the road" is how I think you said it. Maybe someday several GI docs or a family member will get this and look to better understand it. Not that I am wish anyone get this dreadful thing but you KWIM....

So now I begin my 2nd book : Vitamin D and Autoimmune Disease by Wayne Persky