Feeling Lost & Confused

Post by **tex** » Mon Mar 13, 2017 6:13 pm

Rebecca wrote:I was wondering like how does it work when a person is eating NOTHING and they still are having many trips to the bathroom?

That's one of the distinguishing characteristics of MC. The type of D associated with active MC is known as "secretory diarrhea". With secretory diarrhea, instead of the colon extracting and recycling water and electrolytes (as it's designed to do), it infuses water and electrolytes into the lumen (the interior), thus allowing for high volume output. Because of this characteristic, the D can continue even if nothing is ingested, until the body is completely dehydrated, which obviously illustrates that the disease is much more dangerous than the medical community claims.

Rebecca wrote:You should be charging us for consulting on all this !

Sort of similar to the secretory diarrhea that's unique to MC, the medical profession is also unique. It's the only profession in existence where practitioners can bill people for their services regardless of whether or not the client/patient receives any benefit from the services.

Rebecca wrote:Not that I am wish anyone get this dreadful thing but you KWIM....

I'm pretty sure that if the requirements for becoming certified as a GI specialist included a 6-week trial of drug-induced MC, the official medical description of MC would probably change almost overnight from "a self-limiting benign disease" to "the worst damn diarrhea known to modern medicine". I'm guessing that it would dramatically change research priorities, also.

Tex

Rebecca2z · Post by **Rebecca2z** » Mon Mar 13, 2017 6:33 pm

OMG Tex, You are hysterical !!!

Best darn post ever !

Because of this characteristic, the D can continue even if nothing is ingested, until the body is completely dehydrated, which obviously illustrates that the disease is much more dangerous than the medical community claims.

Yes this is why I spent 9 days in hospital, I was very dehydrated.

I talked to the pharmacist nurse & doctor who makes up my TPN today and I got the soy taken out of the mix, he wouldn't agree to taking it out everyday, but will try me on 2 days without, well I need that stuff gone completely - I will tell them how great I did without the soy.... wink wink... They are going to up the protein too.

Excellent book on Vitamin D, I am learning so much and should have my new vitamin D tomorrow.
I actually think my immune doctor would love this book. He gets it better than most doctors. We really talk, he has become a friend and I would be comfortable bouncing things off him that I have learned from your books.

This really cracked me up... "6-week trial of drug-induced MC "

Gabes-Apg · Post by **Gabes-Apg** » Mon Mar 13, 2017 6:56 pm

Awesome news that you might be able to reduce the soy, less toxins is less inflammation....

Progress not perfection....

Funny story, my mother has crohns and due to various stuff ups in medical situations has ilostomy bag and has to empty her blade via a catheter every 3hours. She carries a lot of shame about her situation. Anyway Xmas time she wanted to buy me some clothes for Christmas. We are in a ladies clothing store and the store lady tried to get me try on white pants with a tight fitting top. I very calmly said, thanks but no thanks, said that I have colitis condition where urgent slightly incontinent diarrhoea is a common occurrence in my life, along with that on bad days I sometimes wear an adult diaper, mentally and emotionally I could not be relaxed in light colours and tight fitting outfits.
The lady was great, knowing my situation she offered better options. My mother commented she was jealous that I could be open about my health situation with strangers. I replied, I have no shame about it. I work so hard with the limited eating plan, and lifestyle changes to minimise issues. It takes less energy to be up front, honest, realistic about it, than to try and hide it.

That is my tactful explaination of MC to strangers.
If people try to pressure me to have 'just a little bit' of their gluten, dairy, soy, filled cake. I reply, no thanks, don't want to spend the next 24 hours on the loo with battery acid diarrhea. That is normally enough of a description that they leave me alone!!!

Rebecca2z · Post by **Rebecca2z** » Mon Mar 13, 2017 8:06 pm

I am glad you think I did right in trying to get that soy out of the TPN and I think I will use your term "inflammation" when I speak with them next. I keep forgetting that is what is going on...

I envy you in that you can be forthright about your situation. Funny thing I never even thought about adult diapers, I just haven't left my house in the 5-6 months, except for my hospital visit. Or if I knew I had to leave the house I made sure I had no bites of food or water the day before.

For me at this light weight going a whole day without food & water is not good, especially since I was doing that without the back up of a feeding tube. But that is how I have been handling this 15 times a day WD. I am getting something to protect !! Funny how that never occurred to me. So wow you sharing that was a big game changer for me.... I am sorry your Mom feels shame, and I am sorry she has such struggles like that. But tell you mom how your sharing your story helped a women leave her house again !!

Aww - your mom was raised in that generation where they can't even put on a hospital gown to be examined. My mother is the same way. She can't even say diarrhea.... Poor things.... I have always struggled with telling anyone about my health issues. I try hard to hide them, but now it shows on the outside so I feel I have to offer an explanation. I did loose my hair and I tell everyone I have a wig on, no problem with that issue...

I am already going the rounds with my sister about my diet, she says tonight to me " well I think you are being extreme, you can have tiny amounts of bread, or a little cheese " ... so I know I am in for a whole lot of that. People are going to think I am being ridiculous. That is going to make this doubly hard.

Thanks for your thoughtful post ! :bigbighug:

Rebecca2z · Post by **Rebecca2z** » Mon Mar 13, 2017 8:13 pm

How come I can't post an avatar ?

Gabes-Apg · Post by **Gabes-Apg** » Mon Mar 13, 2017 8:30 pm

People are going to think I am being ridiculous. That is going to make this doubly hard.

my MC lifestyle definitely was a BIG filter on friends and relationships. I soon learnt who my true friends were, the ones that embraced my decision and go out of their way to support it, help it, even source 'Gabe Safe' ingredients, recipes etc.
years ago, one friend to give me a thank you present, instead of the normal bottle of wine or box of chocolates, he went and got a voucher from the butcher that he knew I went to get my grass fed meats. another friend would give me vouchers for online retailer that sells organic/gluten free type products. it means a lot when non MC'ers get it and support you.
My sister's interpretation of my health situation is 'that I am allergic to world'

it is your body, your life, and until someone has spent days, weeks, months with battery acid diarrhea they don't get.
don't waste too much energy trying to explain it or justify it.

I have worn adult diapers on planes when I used to travel interstate/internationally for work, and other rare times that I am having a flare and have to leave the house. These days, it is very very rarely that I do wear them ( I tend to stay close to home on bad days) but when I am purchasing clothes for work it is one of the considerations.
for the past 3 years, as I am low income, I only get new clothes when someone like my mother gives me money for them. so they have to last me a few years!

I think your situation is similar to mine where MC is a symptom due to the other issues going on in your body that have caused chronic inflammation and nutrient deficiencies. It is not our root cause illness like many others here. We have to make decisions taking all the health issues into consideration, ie the path with the least impact to the combo of health issues.
that is where we have to accept that we cant do everything perfectly... progress not perfection.
and the other mantra that fits here - give me the courage to change the things I can change, accept the things I can not change and the wisdom to know the difference.

Rebecca2z · Post by **Rebecca2z** » Mon Mar 13, 2017 9:28 pm

Hmmm, ok I see I will need to teach my friends the appropriate reactions to my new diet.

You have some great friends there who are thoughtful even if they don't get it. I love this term:

source 'Gabe Safe' ingredients, recipes etc

You're so fun I wish we lived closer - I can tell it would be a total blast to hang out with you !

I told my husband tonight I might like to get something like an adult diaper if I have to go out, just see how he was going to react, he said "Good that's a great idea and if we go to the coast next month that will help on the ride there"
This coast trip has be cancelled 3 times, I hope I can make it, mostly for his sake. This MC added to what has already fallen apart in me has been so hard on him. I am going to make that trip if it kills me !

Yes we surly do have to make decisions that take all our health issues into consideration.

I am saying to myself well if Gabes can do it and still have fun and do car shows, go shop with her mom, I can too.
That's the beauty of a support group.

Thanks for all you kindness & guidance, it truly helps.

Gabes-Apg · Post by **Gabes-Apg** » Mon Mar 13, 2017 10:06 pm

I wished I lived closer, as I have made some fabbo friends via this site - it is on the wish list that should I ever have the funds for the air fare then I am heading over to the USA to meet all my PP friends!

Friends and family will embrace it - when they see you accepting it, embracing it enjoying it persay..

trips away, big events etc are all doable. I put a fair bit of planning into things like that. budget and plan my physical, mental and emotional energies. ie to be prepared for the big two day nostalgia festival in 1.5 weeks, I have been preparing extra gabe safe meals and freezing them so I have pre-ready meals for the week after.
the weekend before and weekend after are blocked for quiet time so I can catch up on chores/housework, get lots of rest and be ready to enjoy myself

within a couple of months I am confident that you will have a Rebecca Safe management plan, food wise, activity wise, etc
when there is less D happening you get to know your body and its little symptoms. I get niggly symptoms about 10 mins before a poop so if i am out when they happen I know I have 10 mins to find a toilet. keeping in mind that for any event or venue I go to, I look up the location of the toilets before I go there!!

I managed to do the 30 hour transit to france and spent 3 weeks working in france (where gluten and dairy rule supreme food wise)
it took me months to recover! but I did it.

again - have faith that you are on the right path! (with the right people to help xo)

just saw two black cockatoos when I had to go the stationary place for work. that is a symbol that rain is coming
just now the thunder is starting so wet night ahead.

sweet dreams
take care

Post by **tex** » Mon Mar 13, 2017 11:02 pm

Rebecca2z wrote:How come I can't post an avatar ?

The system can be a bit finicky about accepting avatars.

If you will attach an image file to an email and send it to me I'll be happy to convert it into an avatar and upload it for you. It works best if you don't reduce the image file size before sending it. That way I can reduce the file size in a way that will meet the size limit while preserving as much detail as possible.

You can send me an email by clicking on the "email" button at the bottom of this post.

Tex

P. S. 2 days may be enough to notice improvement from removing soy from the TPN if residual gluten antibodies are not still dominating your reactions.

Rebecca2z · Post by **Rebecca2z** » Tue Mar 14, 2017 10:09 am

I bet some day we can all meet up ! I think that is true if I show I can embrace this diet with no whining

my friends and family will have an easier time embracing it. Good advice for sure.

I managed to do the 30 hour transit to france and spent 3 weeks working in france (where gluten and dairy rule supreme food wise) it took me months to recover! but I did it.

Wow Gabes how in the world did you do that !! That is an accomplishment !

You really do have some great birds, black cockatoos ! How fun, I would have a field day making friends with those !

I love the bird photos you guys shared and in fact I am enjoying that part of the board where we get off topic.

:party:

Rebecca2z · Post by **Rebecca2z** » Tue Mar 14, 2017 11:46 am

I just wanted to ask about Magnesium, I am only using the spray and foot baths. But wonder if I should be on a supplement, which can't be pill form. Here is my test result on my Magnesium level, which says I am with in range, if I am reading this right ( I am not good with interpreting the lab results) It says my range is 1.8 and the standard range is 1.8-2.4

Component Results
Value Std Range
Magnesium, Ser/Plas
1.8
Standard Range 1.8-2.4

Result status: Final result

My Vitamin D results which I can't figure out at all, what does it mean when they are measuring D2 & D3. They have my D2 at <4 and then it has my D3 at 25 :

Component Results
Value Std Range

25-Hydroxy D2
<4

25-Hydroxy D3
25

25-Hydroxy D, Total
25

25-80

Optimum levels in the normal population are 25-80

Post by **tex** » Tue Mar 14, 2017 12:33 pm

They probably add enough magnesium to the TPN solution to keep "normal" people in the "normal" range, but because MC depletes magnesium, your level is right on the lower limit. More magnesium would almost surely help. But with such small volume going through your digestive system, I believe that topical application is a safer choice (especially if D is still a symptom). At any rate, you're not critically low, based on that test result.

I have no idea why they even bother to report D2 levels, but I suppose it's traditional, so they continue to report it. Virtually everyone's D2 level is below 4, so it's pretty much irrelevant.

Vitamin D2 (ergocalciferol) is the type of vitamin D produced by some plants as a result of exposure to UV radiation, and it's used to fortify some foods (such as cow milk substitutes). But D2 is typically poorly absorbed by humans.

Vitamin D3 (cholecalciferol) is a much more biologically active form of vitamin D, and it's the form found in humans and most other animals. Vitamin D3 is the type that's formed in the skin due to sun exposure. Research shows that vitamin D3 is at least 300 % more effective than vitamin D2 for treating/preventing human health issues, and this advantage even carries through to longevity studies.

Again your result is at the lower limit. So you're not critically low, but a higher level would allow your immune system to work better (more effectively).

Tex

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 14, 2017 2:40 pm

Rebecca
loving the avatar pic!

Re magnesium levels - quoting Tex
"The point is, when you get your "normal range" data from a population that has been shown to be 80 % magnesium deficient, the data are severely skewed (toward the low side) right off the bat.

So ideally, in order to actually be normal, one's RBC test result should be in the range of 6.0—6.5 mg/dL. "

for now given everything going on digestion wise, regular topical magnesium will be ok,
dont want to taint the outcome of testing the soy free mix and you are working up to bigger doses gradually
secondly, given everything that we have discussed, i think absorption via your digestion would be limited.
magnesium is absorbed via duodenum and ilieum, and efficiency of absorption is about 30-40%
if your TPN has calcium, iron etc then these will impact magnesium absorption in digestion - so topical is your optimal option.

Rebecca2z · Post by **Rebecca2z** » Tue Mar 14, 2017 9:01 pm

Thanks Gabes, I thought having an avatar would be more personal !

I got my vitamin D today and took two drops. I will do my foot soak tonight and I am spraying the oil on. I appreciate you keeping me on track. Thank you for your thoughtful comments on the vitamins and TPN. I think you have helped me fine tune all this so nicely !!

So I have been looking over my diet for the last 6 months, before MC hit and after it hit. Now I don't know if I am on to something but I will know in the next few days. Maybe I will know tomorrow morning.

I don't eat much and I don't eat things that are processed ( never have) and what I do eat is in tiny amounts for the last 3 years. ( as I have gastroparisis) I have not eaten bread for 5 years but I did start eating pasta more in the last 2 years. So after going over what I take in for solid foods I started to look at my liquids.

I drink at least 2 of these beverages called SOBO, they are a vitamin water that is flavored. I take a 12 oz glass and fill half with water and 1/2 with this SOBO and I drink 2 of those SOBE's a day, sometimes 3 a day- right until I go to bed at midnight. In my coffee I use what I thought was stevia, it is called Truvia, it has a picture of the stevia leaf on it so I thought it was stevia. The two things the Truvia and SoBe have in common are an ingred, called erythritol.

I thought hmmm wonder what that is, it is the second ingred on the SoBE, the first ingred being filtered water. From there the ingred look fairly benign and some look pretty good.

Well long story short, I woke up this morning with this epiphany and I didn't have any SoBe all day, I noticed I didn't have all the pain, gurgling and not much WD ( although I did have the typical morning issues with WD) But today my stomach was so calm no cramps and after high noon I had no WD and I haven't had any since early this AM. I looked up this erythritol and there are a lot of people thinking it is causing them issues.

I will know in the next couple of days I think. Maybe tomorrow morning I might know. I hadn't really thought all this through this morning and I did put a packet of Truvia in my coffee, but that is only about 1 teaspoon - much less I am sure then what is in the SoBe drink.

While in Stanford hospital I drank SoBe everyday, doctor sat right next to me watching me drink it. They had a vending machine in the hall that I was buying it out of. I sip that SoBe from the minute I get up till I go to bed at midnight and in fact I try to drink a whole glass right before I go to bed.

So well I thought I would throw this out there, because what IF .....

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 14, 2017 9:47 pm

looking at some of the variants of the SoBe there are quite a few ingredients that tend to be an issue for MC'ers
citric acid, most of them have more than 5 ingredients, with some herbs etc, lots of sugar etc

a quick google search came up with this about erythritol

Is erythritol a safe and smart substitute for sugar? If it’s made from GMO cornstarch, then absolutely not. I definitely don’t recommend it, especially when there are healthier, safer options readily available. If you’re talking about non-GMO erythritol, then it can be a better choice than some other artificial sweeteners, but I still think there are better options out there.

as we have discussed and you may have read in other posts/discussions. generally there is no one food/drink trigger that causes MC, it is multiple things. and once people remove majority of their triggers then symptoms reduce and for some go away completely
for you, giving up gluten and diary is a fantastic start, reducing soy intake is another, and removing these types of drinks from your intake will also be a BIG help.

coffee with natural stevia is a better option. like our food options, any drink that has more than 3-4 ingredients should be avoided.