Feeling Lost & Confused

[Rebecca2z]

Oh Gabes, I know I must calm down, I wish I could drink that Calm powder stuff, that has a very calming effect on me. I do love Mag, it so agrees with me!

I am just so nervous about my situation, I am on the TPN a week now and holy smokes I have LOST weight, this is unheard of, I should have put on at least 1 pound.

It's all the WD, if I hit 89 pounds or anything in the 80 range, I am going to loose it. I need a child's potty
now. I am falling right through the toilet ! Really ....seriously I am !

New Vit D won't be here till next Friday. I will continue with what I have though.

Thank You Gabes, I am seriously grateful !

< You & me

[Gabes-Apg]

staying calm is very important - stress is another key trigger for many here.

you have some starting points, and as Vanessa reminded you, we need to start low dose and work up.
day at a time, dont focus on the weight level too much. it will resolve in time once you make some of the changes.
there is no quick fix for your current situation. be at peace that you are on the right path and taking the right steps.

in the mean time, epsom salt foot soaks, topical magnesium is good thing to focus on.
get some podcasts or audiobooks playing to calm your mind.

[Rebecca2z]

All great suggestion Gabes, and I have lots of great calming c/d 's I can listen to. I know stress is a major factor because when I am stressed like this my stomach makes really loud noises and then the WD happens.

Now on the epsom foot baths, I have not heard about this, how much Epson to say a pan of water ?

Best advice ever Gabes > "be at peace that you are on the right path and taking the right steps."

Doctor called in the cholestyramine for me, brand name San Doz, the doctor's nurse called back and asked me what dose, I had no idea, so I said a Teaspoon 2 X a day... This was just my local family doctor, my Stanford docs haven't even called me with any treatments of any kind. So weird, how they just dropped the ball with my GI problems.

They said they wanted to refer me to another GI clinic, but I haven't done anything about it. I need to find a GI doctor closer to home. There is nothing a GI doc can do anyways, they just want to drug people. I want to do this with food and Vitamins and with the help of all of you.

As always your grateful new friend !

[Gabes-Apg]

1 cup of epsom salts in pan of water - this is will give you at least 200mg elemental magnesium (just over half the daily RDA)
doing this of a night will help improve sleep quality etc as it is relaxing to the body

when we are magnesium deficient, it can take at least 8 weeks of good dose elemental magnesium to start to resolve the deficiency.
for me and my combo of health issues it took me 4-5 months of high dose magnesium to resolve the deficiency, and start to use magnesium properly...
hence why you dont need to worry about few days it will take for the Vit D3 to get here.

I have calming podcasts/audiobooks etc that i have on ipod, anytime through the day if i get a stressed, just 5 minutes of a track can calm me down.
anytime you start overthinking, feel the urge to 'make things get better' play a track.
insert yoda type voice, "trust the flow and learn to let things happen she must"

many of us here prior to MC were perfectionist high achievers, apply physical and mental energy to fix things, complete things do a great job. In MC world we learn to let go of perfectionism, we learn patience, we learn to nurture ourselves guilt free, we start to trust blind faith a bit and go with the flow.
We cant get rid of MC or kill it off like cancer. we learn to live with it, love it and nurture it.

thats great that the doctor called in the cholestyamine. if you read the posts i put the links in for, you will note that you need to have it away from any other oral medications or supplements you are having. (that is why using topical mag and lingual vit d3 will be better for you in the long term)
also great that you were able to confirm another trigger food.
(eggs are a problem for many, i think it is because the chickens are fed lots of grain) I do ok with free range chicken eggs that are not fed wheat and soy.

relax today, turn the computer off, play some relaxation tracks and surround yourself with good healing thoughts

take care - I am off to prepare the 57 Chevy Bel Air Sports for a car show in a few weeks!

[Rebecca2z]

I have been reading a lot in here, recipes and such. I haven't seen anything about Quinoa, is that ok ?

[tex]

So in looking at my list, I would say take out the garlic, tomato sauce, almonds, salmon, raspberries, chocolate, coffee & cream , egg, brown rice, oat cereal. I don't cook my green beans to mush and I read in here that they should be cooked pretty good, so I will start doing that. The pasta I am stopping and getting a GF one, so that's seems an easy fix. But in my current state, with these changes I am worried my body will be starving even more. (I say body will be starving because I feel no hunger anymore.)

Very interesting! I also lost my ability to feel hunger pangs roughly 10 years ago as I was recovering. FWIW, that ability has never returned.

Unless you are very sure that coffee is a problem, I see no reason to avoid it. It will help speed up motility, and as long as you are careful about what you put in it, it will not exacerbate MC. To prevent starvation you need protein and fat. Carbs are the only so-called nutrient that humans do not need. We have to have protein to heal and grow muscle tissue and provide energy, and we have to have enough fat to prevent the condition known as Rabbit starvation, but carbs we can always do without, and we are much healthier for doing that (despite "expert" claims to the contrary). Carbs are primarily cheap sources of energy that typically lead to unhealthy fat.

Most foods cause me severe pain, I haven't been able to eat any salad's for a very long time or bananas, bread & meats. I feel like I have eaten Thanksgiving dinner and Xmas dinner back to back 24/7, that feeling is never gone. I just walk around all the time saying "I am so full" If I force myself to eat it makes me really sick and I try to vomit, but the gut and throat muscles don't work and I can't move food up and out. I relux something awful and it gets into my lungs. Sadly food has become my enemy, the pain of getting it down and out is just awful and it is over the top painful when it just sits in my gut.

Yep, that's classic gastroparesis, all right. That will need to be resolved before attempting to tackle any serious meals.

All my tests for the mechanical parts of swallowing, digesting, bowel and my autonomic system have come in showing exactly what isn't working. My BP is 60/48 and most of the time the cuff can't even register a BP - especially on standing. I take the Northera to help with that.
These are all mechanical things with no fix.

Remember that magnesium can also lower BP.

If you buy any quinoa be sure to look for a Kosher brand. Some quinoa is mixed with glutenous grains to help during the drying process (it's grown in the mountains and unlike most grains, it doesn't dry naturally before harvest.) If the cleaning process is not perfect, the quinoa remains cross-contaminated with gluten. Kosher brands are certified gluten-free.

Tex

[Lou Ann]

Vanessa,
I saw those Ortho Molecular d3/k2 drops on Vita Living website for around 30.00 I believe. You can check it out for next time maybe!

Lou Ann

[Vanessa]

Lou Ann,

Thanks! I wonder why it went up on amazon....who knows.

[Rebecca2z]

Thanks Gabes on the amount of Epson, I went back through our conversation and I couldn't find the link to that. I am half brain dead ya know !! LOL

I will do a foot soak tonight. I also appreciate you sharing the info on how long it took for you to resolve your deficiencies. I was thinking it would happen a lot sooner, so thanks for that little reality check !

It' so hard for me to not want to fix it NOW.

Very interesting about the chickens being grain fed and you do ok with eggs that come from free range chicken eggs that are not fed wheat and soy. This is something to consider down the road when I am not flaring. Eggs are easy for me to digest and good protein. I need to figure out protein and fats that I can eat in small bites.


I am so happy you are doing something you enjoy today. How fun it is to be involved in vintage cars, my neighbor/friend is very into it, she has some beauties. Enjoy working on that 57 Chevy !

Thank You for some great comments that really made me chuckle today... ie : "insert yoda type voice, "trust the flow and learn to let things happen she must"

Laughter truly is the best medicine !

Hugs,

Rebecca

[Rebecca2z]

Oh Tex you too, you can't feel hunger, you know lots of people wish they had this problem, I tell them be careful what you wish for !
This lack of hunger makes getting enough food a constant battle for me.

I know there are meds that can stimulate appetite but I have never had any luck with them and the one medicine I did have luck with taught me a huge lesson, I can't take in too much food without severe pain and I ended up in hospital. Our bodies have a way of knowing. It would be torture if I did have hunger and not being able to eat so in this regard I am thankful.

I have to tell you after I read your comment about coffee I ran ( well in my mind I ran, in reality I crawled) to the back of my house screaming to my husband "TEX said I might be able to have coffee" "TEX said I might be able to have coffee" He says "whose Tex" I said " The man, the man.... you know the one on the site that knows so much about all this, the one who is saving me" LOL
Don't feel any pressure there Tex... LOL

....but oh wow, to give up the tiny amount of coffee I enjoy each day would be a very sad day for me. I know I don't know yet if I can or can't have coffee. But just thinking I maybe able to still have it gives me joy - The fact that it's not on the 'DO NOT HAVE LIST ' is a little gift !

OK Tex, so now on to your very important statement about "To prevent starvation you need protein and fat." So yes I get that, carbs are so not going to cut it. I have been reading about foods I can sneak in that don't fill me up, like mayo, avo, sour cream and those are not going to work for me now, maybe after this flare calms down. But for right now, I am not sure what to do and how I can slip in some fats & calories that aren't filling. My brain is going to melt down without fats. I already can feel it and have issues with making proper sentences in here...

All and any suggestions are welcome !

Oh I had forgotten that magnesium can also lower BP. Will maybe have to up the dose of Northera. Sips of coffee really help with that. It takes me all day to get 1/2 cup down, I very full from any liquids.

Great great info on quinoa, I will look for Kosher, quinoa pasta tastes exactly like regular gluten pasta to me. I am not fond of the rice things I have tried. I was eating whole wheat pasta from Trader Joe's. Many people with gastroparesis do very well with pasta's. After going off the feeding tube 8 months ago, I found I could swallow and digest it pretty good. I had never eaten much wheat or breads before and maybe this is why I find myself in this MC world.

Not having heavy cream is going to be sorely missed as it is an easy way to add weight to me. I have a lot more research to do in regards to the proteins and fats.

Thank you again Tex for all your help. I can't wait to get my books Vitamin D and Autoimmune Disease: How Vitamin D Prevents Autoimmune Disease and Microscopic Colitis: What Really Causes Microscopic Colitis, Celiac Disease, and Other Autoimmune Diseases from Amazon ( says they are arriving on Sunday !!)

[tex]

The simplest way to get a good balance of protein and fat is to eat fatty meats (such as lamb). The native North American Indians made pemmican and carried it with them when out hunting in order to make sure that they had enough fat along with their protein.

When it's not used much, the stomach eventually shrinks to a very small size. It will slowly expand though, as you begin to use it again (provided you can overcome the gastroparesis issue. My experience was that my gastroparesis faded away as my gut healed (without any medical intervention).

Hmmmmmm. That's interesting that you can get Sunday delivery. If you run out of reading material, the book on Pancreatic Cancer contains a chapter on magnesium and a chapter on Diabetes. Those 2 chapters contain some very good information about magnesium and how magnesium deficiency causes insulin resistance that eventually leads to diabetes. I wanted to give the book away, but Amazon does not allow that, so their minimum price (for zero royalty for the author) is $3.85 for a printed version and their minimum price for a digital book is 99 cents. But you can download a digital copy free of charge at Smashwords, Barnes&Noble, and Apple, for example. Here's a link to the Smashwords site:

https://www.smashwords.com/books/view/665808

Tex

[dfpowell]

Rebecca,

When I started Cholestyramine, 7/2015, I was on 1 scoop or packet 2x/day. Currently I have reduced it to 3/4 scoop 2x/day. I take it in the morning around 8 am and around 8 pm in the evening. You need to take any medication or supplements 1 hour before or 4 hours after the Cholestyramine, so that it will not bind the medication or supplement. I usually take my supplements with lunch and dinner.
Hope it is helpful for you!

[Rebecca2z]

Thanks Tex, I will try the lamb, but since having this gastroparesis I have not been able to digest any meat what so ever. It just sits in my gut and rots till I vomit it which I can't do very well - Maybe a ground lamb. I will try anything in small amounts and see how I do.

I had a Radionuclide gastric emptying study test ( 5 dreadful hours of being wheeled into a machine over and over) they had me eat scrambled eggs and in the 5 hours it didn't go anywhere. In fact I had to have the scan done twice the next day to see where that egg was, and it was still in there.

So my motility is pretty bad. I also can't pass gas or burp anymore. That's probably TMI, but it gives you a good idea. My RA doctor at Stanford said I have the worst case of EDS he has ever seen and they should re-name this disease after me.

My uterus fell right through when I was 21 years old, they surgically tied it back up and it fell again. ( and I have never had children) I have many other prolapses.

That surgery where they tied my uterus up, according to my doctors was a primitive surgery and they don't do it that way anymore. ( I am 62 years young now)

Also the re-hanging of my uterus created a ton of huge adhesions some of which attached my sigmoid colon to my abdomen. I had to have many of the these adhesions cut and of course more were made. I had to risk it as I could hardly move without a lot of pain. I have some pretty cool photo's of all these things as he put a camera in. I believe these surgeries are why my gastroparesis is so bad.

I blame everything on EDS because if my connective tissue was normal the uterus wouldn't have done that at 21 years of age. When I was 21 they didn't know I had EDS. So well we do the best we can and on ward we go.
I explain all that so people know surgeries on,in or around your abdomen can have risks.

Tonight I ate 1 shrimp cooked in olive oil and 2 Tablespoons of white beautiful fluffy jasmine rice, and it went right through me... WD !! I am furious !! I had no seasoning on it what so ever, no salt, no pepper and no garilc... I cooked it in a teeny tiny bit of oil.... GRRrrr what the heck !! I am doomed :(

[Rebecca2z]

Oh Donna you are so thoughtful, I printed out what you wrote. Thank you so much for this info. The tub that it comes in has directions but not for our problem. I so appreciate you sharing how you use it. I am kind of on my own with all this.

Extremely helpful info- thank you.

Also good advice about taking with supplements, even though most of what I use is liquid, it is still good to know this. I take that Northera that raises my BP 3 times a day and I sure wouldn't want it to bind with the Cholestyramine.

You really helped me on this one !!
I got two large tubs of Cholestyramine and it only cost 5 dollars for both !

So Donna I see you were Diagnosed with CC August 2011 and you say in your post you started this Cholestyramine in 2015, I wondering what did you do from 2011 to 2015.

I am sure I will see your story as I make my way through this board. I am so busy reading what I can eat and can't eat I haven't had a chance to meet many others in this wonderful group. I would also like to give support to people and especially new people.

I know I am still a fledgling on the important details about foods and treatments, but I sure can offer emotional support.
I won't just come in here and whine about my stuff, I promise.......I will try to help others very soon. In 3 days of being a member I have read more than I have read in the last 5 years. ( or is it 2 days - brain fog really bad)

Thanks Donna !

P.S. I have my feet in Epson salt Gabes ;)

[Rebecca2z]

Yes Tex, I have had many deliveries on Sunday, but only on things I get at Amazon.... I know it's weird but Amazon does this somehow.

I am going to get the other book you mentioned ,Pancreatic Cancer. My brother has type 1 Diabetes and I have had a positive GAD 65 for the last 3 years and I wonder where that is going to lead.

I would like to learn more about "magnesium and how magnesium deficiency causes insulin resistance that eventually leads to diabetes."

You should be getting BIG royalties, something's not right there ! Thanks for including the link, I will get one copy and one down load.