Feeling Lost & Confused

[Rebecca2z]

Hello,
I appreciate having a forum where I can learn about my newly dx MC. Here is the biopsy report I got yesterday from Stanford. It was on my online health chart and I have not received a call from my doctors with any advice in how to deal with this problem. Maybe they are waiting for the endoscopy results to come in before offering so guidance.

I am not just going to wait for my GI team to call, I want to get started NOW with healing.
Here is my report:
A. SMALL BOWEL, DUODENUM, BIOPSY
-- NO SIGNIFICANT ABNORMALITY
B. COLON, RANDOM, BIOPSY
-- CHANGES SUGGESTIVE OF LYMPHOCYTIC COLITIS (SEE COMMENT)

FORGO/OZAWA/CARNEAL

COMMENT: Histologic sections of the specimen labeled "random colon"
(specimen B) show increased lymphoplasmacytic infiltration of the
lamina propria and patchy increase in intraepithelial lymphocytes.

Subepithelial collagen is focally increased, confirmed by trichrome
staining. Overall, the findings support microscopic colitis (lymphocytic/collagenous colitis spectrum)

I have been suffering with diarrhea for many months which is a major switch from the constipation I have suffered from for many years. I was dx with dysmotility of the entire GI tract about 3 years ago. I was on a feeding tube for 2 years. I have been off the feeding tube for 8 months and able to hold on to some weight. I was still malnourished off the feeding tube and under weight but was holding steady. Then the diarrhea came on board 5 months ago and I lost a lot of weight, ( which I for sure didn't have it to loose ) I just got out of Stanford hospital where I was for 9 days. Needless to say I am back on the dreaded TPN feeding tube. This diarrhea is sucking the life out of me.

I have many autoimmune issues, I have 2 genetic diseases 1. APECED 2. Ehlers Danlos. I have discoid lupus and Autonomic Failure and Interstitial Cystitis for many years and now this MC.

Where oh where do I start in treating this MC ? Do I take drugs to stop the diarrhea ? I look at what drugs are being used and I see a steroid is one. I have APECED ( autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy) see that word in the middle candidiasis that means NO steroids ! Right now I am going through a 13 day IV infusion of Micafungin, as I am systemically loaded with fungus ( cultured and grown in dish)

I wonder if my wide spread fungus is part of my issue with the MC. I can't take antibiotics either, steroids and antibiotics are fertilizer for fungus. ... and of course sugar, I have done every yeast free diet and cleanse in the world, grape seed extract, Pau d'arco, ancient Chinese medicine, Ayurvedic diets, expensive Probiotics that come shipped in on ice and on and on I could go with the weapons I have brought on board to just tamp down the fungus.... and I almost killed myself in doing them- massive weight loss and no change in the fungus. This is APECED, and when you have genetic problems like this and Ehlers Danlos there is no Western or Eastern medicines to treat them, there is no cure, I just have to do the best I can.

I know everyone in world has a cure for my fungus, I know you all will be tempted to share with me all the diets and colon cleanses and Probiotics that work. Believe me when I tell you I have tried them.

I want off this feeding tube, ( the TPN crap they have me infuse in my picc line is making my fungus REALLY BAD ) I won't live off the TPN if I am having diarrhea 15 times a day and 3 times in the night. I can't even get any weight on me with the TPN. ( I am on TPN because I have no motility in my gut and can't use other types of feeding tubes. )

I have been on IVIG for 9 years and I take Rituxan every 6 months to wipe out my B Cells. I am host to both - a over active immune system and a under active one. My body is one big Cluster F#%k !

I guess if someone could give me some direction on do I try drugs, diet or both for my new enemy called MC ? I have been on a low fodmap diet for months. Because of the motility problem I can't eat much. (This GI motility is believe to be related to my Ehlers Danlos.) I currently weight 92 pounds and I am 5'7".

My warrior self is weak and weary and I am in so much pain. I am feeling overwhelmed with this new dx of MC. Sometimes I don't know if I should call hospice or keep on going.

I take no drugs for pain, I have never taken any opiates, I can hardly stand up from the fatigue, why would I ever add something like an opiate, which does nothing for my pain. I have occasionally taken Tylenol for pain but I wonder is this ok with having this MC ? I take a drug to raise my blood pressure called Northera ( Faulty autonomic system, called Dysautonomia- dx by Neurology at Stanford, 5 hours of tests, tilt table, sweat test etc.) I can't find anything about how that drug Northera could be the cause of my MC.

Well thanks for listening and allowing me vent.

I will now get busy reading all I can in here. (I have in my shopping cart on Amazon, Wayne Persky's book, I will now go hit the buy button ! )

Kindest Regards,
Rebecca

P.S. I do know a little bit about Mast Cell, my Stanford teams don't believe in it, I am on the fence. But if the treatment is antihistamines I am in real trouble.... OMG I react very very badly to those, I think a lot of people with Ehlers Danlos do. I have a cookbook for Mast Cell and when you work with that diet and the Low FODMAP diet, well you can't eat anything, I will have to live on air to follow those 2 diets.

[tex]

Hello Rebecca,

Welcome to our Internet family. Wow! It's no wonder you feel weary. You've been through a lot. And your questions pose quite a challenge. But let's see where we can start.

You're right of course that Ehlers Danlos seems to be associated with a lot of immune system issues. IMO the main problem with AI issues is that the medical community doesn't understand them so their treatments are typically iatrogenic, leading to the development of additional AI issues. This is just speculation on my part (based on past experience with such cases) but I have a hunch that the TPN was the cause of your MC. The use of those products totally distorts the gut microbiome, because so many species of gut bacteria will starve. Only the blood-sucking species can survive in the long run. This leaves nothing to limit the propagation of Candida, so it thrives.

The roots (rhizoids) of Candida have been shown to penetrate the epithelial lining of the intestines, leading to increased intestinal permeability (leaky gut). Leaky gut is the immediate cause of the food and drug sensitivities associated with MC. Leaky gut may not be a prerequisite for the development of MC, but it's so closely associated that the matter of which one comes first is pretty much a moot point. IOW I'm guessing that your MC is the result of leaky gut caused by the Candida overgrowth that naturally resulted from the use of TPN. I'm sure that your doctors would deny that because of liability concerns, but in fairness to them, if you had no gut motility then they didn't have many choices.

The lack of motility may be the biggest challenge for getting off the TPN. One way to speed up motility is small (sub-therapeutic) doses of amitriptyline (doses in the range of 10–15 mg). Therapeutic doses usually begin at 50–75 mg and they quickly become an addiction. Small doses are not addictive. This speeds up motility by increasing serotonin levels in the gut. But the Candida will be another obstacle, without an obvious way to treat it. Opioids slow down motility, so you are correct that they are contraindicated for your issues.

The fact that you already had increased collagen band thickness (the marker of CC) at diagnosis suggests that you have had the disease for a while before diagnosis.

The primary cause of immune system disorders/failures is vitamin D deficiency. Vitamin D is the fuel on which the immune system operates. Most medical professionals seem to be unaware of that simple fact.

Tylenol (actaminophen) is safe for MC. As far as I'm aware, Northera (droxidopa) can cause cardiac issues, but there are no known issues with MC.

I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.

Tex

[Gabes-Apg]

Welcome Rebecca
sorry you have had such a rough and tough journey

given the feeding tube and motility issues my suggestion is to focus on nutrient deficiencies that will help lower inflammation and balance the immune system

priority is Vit D3 and magnesium. there is lingual vit d3 available that will be absorbed via saliva and topical magnesium that can be absorbed via the skin.
the other priority for lupus and immune system is Vit A - again there are lingual versions available and there are also vitamin patches that others here have used for good quality delivery system that bypasses the digestion system.
another suggestion for your combo of issues would be Vit C and zinc, again to support immune system, adrenals, and helping the body heal

here is a link to previous discussion about the vitamin patches
http://www.perskyfarms.com/phpBB2/viewt ... h&start=15

hope this helps

[Rebecca2z]

Thank You so much for your detailed & timely response Tex.

I think you have a very good understanding of a diverse group of diseases due to a number of causes. I totally agree with your statement " IMO the main problem with AI issues is that the medical community doesn't understand them so their treatments are typically iatrogenic, leading to the development of additional AI issues."

Truer words have never been written ! ^^

I have listened to a doctor from the UK speak on leaky gut and you are on the same page with his thinking. Here is a link to his talk that I bet you will understand far better than I do. Check it out Tex ~ you will love this presentation ! And maybe you can help me understand better how I might help myself. https://www.youtube.com/watch?v=qR0vHXdczmM

Yes the motility problem has been difficult, but I was able to get off the feeding tube for 8 months and hold my own. Albeit at a low weight. I had to lower my expectations of gaining my 40 pounds back and be happy that I stayed at 98 pounds. I was able to eat small bites of food 20 times a day. The kitchen is my ball & chain and the only benefit I find with TPN is I don't have to work so hard at taking in small bites all darn day.

The eating 20 times days means that many trips to the bathroom all day and night. That alone has wiped me out.
I am allergic to amitriptyline and very allergic to Reglan, the two most popular motility drugs. I was on something called Mestion ( liquid) to help with swallowing. ( Almost all my meds are liquid as I can hardly swallow.) Lots of tests were done from mouth to anus and all areas had abnormal motiltiy results. I stopped the Mestinon as I thought it was causing the diarrhea. In the beginning I loved the diarrhea because before I couldn't go sometimes for 10 days, so you can imagine my joy at having the opposite problem, at least for the first 2 months, and then it got concerning.

I went off the feeding tube 8 months ago because one the stuff is poison if you ask me and two it was affecting the quality of my life. The only reason I am on it again is my family & husband begged me and said they aren't ready to let me go. They felt if we can get the diarrhea under control I could go off the feeding tube again and go back to that 98 pounds and hold there with the small bites of food.

I think a couple of things happened to increase the fungal issues, the local hospital had been giving me huge amounts of steroids ( decadron and solumedrol) ...big bags of those were infused ( 2-3 times a week) in me at each IVIG & Rituxan treatment, this was against my Stanford team, but the local hospital refused me the infusions unless I did that and they refused to give me smaller doses of these steroids, they gave me what they gave a women of 300 pounds and here I am at a pediatric weight. They were not giving me anything therapeutic, this was given to cover their butts in case I had a reaction. It took Stanford many months to get those pre-meds off the infusions. I was never tapered off them either and struggled with adrenal issues for months. These steroids fueled the fungus and I bet you are right, created a leaky gut.

So now what Tex ? How do I make this diarrhea stop ? I am way past chasing down treatments to cure, I get where I am at. So now it's about having quality of life for my remaining days, and I am not going to have quality of life if I don' t get the diarrhea to stop so I can get off the feeding tube. I tried 4 months of Imodium and Pepto with no change what so ever in the pure water pouring out of me 20 times a day. We are now going into the 6 months of this nightmare.

Another Q. So people who have MC, if they go totally hard core gluten free do their symptoms of MC go away ?

Again I appreciate so much your thoughtful post and letting me pick your brain a bit !!

Kindest Regards,
Rebecca

[Rebecca2z]

Aww thanks Gabes-Apg for some great direction, I am was using a spray on magnesium and a powder called Calm that I added to my water. I went off them because I was using those things to help me with constipation ( which they really did help)
Do you think I should go back on them ?

I take a sublingal B12 and Vit D. ( from Seeking Health) I have been looking at a B vitamin spray ( from the UK) a Methyl B-12 Spray and one that is a blend of methylcobalamin and adenosylcobalamin. My Vit D was at 9 and now I am at 25, and I think it should be higher, thank you for that reminder on Vit D. And of course I am on Vit C, Zinc & Thiamine. I take in a lot of vitamins as my blood is drawn every 5 days so they can make up the TPN based on what my nutritional deficiencies are, they add is what is low or abnormal from that blood work.

I didn't know about Vit A, so I will look at that for sure. I am very interested in the vitamin patches you mentioned, these sound like a great option for me as I am not absorbing much ( guessing at that) Thank You for providing the link.

Thank You Gabes for your kind words & thoughtful post !

Kindest Regards,
Rebecca

[Gabes-Apg]

topical magnesium is a definate - we need it to use the Vit D3 properly, help to lower inflammation and clear toxins etc.
we encourage people to get their Vit D3 level up to the 50's

lingual B12 of those types is a very good option. Vitamin wise, I would lean towards patch, topical and lingual, as i dont think you would be absorbing so well through the gut.

the other option linked to mast cell /histamine and high levels of inflammation is Active B6 (P5P) but that can be down the track
if it was me, for now I would focus on Vit D3 and magnesium, get inflammation levels down.

we have suggestions for the eating plan - not sure how you can adapt these to suit.
one treatment option that may work for you is cholestryamine (non steroid)

depending on how much reading you have done, I can tell you that the treatment approaches for things like Crohns disease do not work for MC
(this applies functionally, supplements, herbal, acupuncture etc) MC is different to other IBD's.

keep reading and keep asking questions
take care

[Rebecca2z]

Ok, thank you again Gabes, I will get back on my Ancient Minerals spray oil and I just took some more Vit D.
I am getting even more scared because the diarrhea today is the worse it's been. I have been on the TPN for just 6 days and I am scared that is making the MC even worse, something is, I have never made this many trips to the bathroom.
Oh man what a nightmare this is !

Now you mentioned cholestryamine and this is very very interesting, while in hospital a 'Hospitalists' came to see me and I was crying and begging him to help me stop all this water from pouring out of me and he gave me 2 things 1. a pill that I have a hard time getting down it was called Pancrelipase and 2. a orange flavored powder called Cholestryamine. For the first time in 5 months I had an almost fluffy type stool. But I didn't know which medication helped, he gave me both at the same time. I just got done taking 7 days of the Pancrelipase, which did nothing for my issue. I don't have a script of Cholestryamine. I have only been home from the 9 day stay at hospital for 7 days.

I guess I should try calling local family doctor and ask for this Cholestryamine, because this must have been what somewhat helped while I was in hospital. Thank You, this is giving me a little hope, maybe I can get a script of that. My local doctor gave me the 7 day supple of Pancrelipase as a sample bottle he had in his office.

While I was in Stanford hospital and being discharged, I said to the doctor so isn't there anything you can give me to stop all this diarrhea his answer was "no nothing for you, this is a very complicated case" Now at the time of this discharge they hadn't had the biopsy report back showing MC. But they just let me go home in the same shape I was brought in and 2 days later I ended back up in hospital with severe dehydration and malnutrition and that is when they put me on TPN. I am so not impressed ! BTW my GI team at Stanford wants to pass me off to a new GI clinic at Stanford. (I am looking closer to home for a new team, I am close to UC Davis in Ca.)

Anyway, I am all over trying the Cholestryamine, I just want this 'D' to calm down a bit till I figure out something for the long term. So thank you for that info !

Oh man I have been looking at the diets you all have written about, depressing, I already can't eat much. I find looking at the lists of what can be eaten a happier place... I mostly eat Salmon ( 1-2 Tablespoons) and a Tablespoon of brown rice and I am full. I have to say though I am not suffering with hunger .... I lost that feeling 3 years ago. I do pick at dry cereal somewhat, and I need to change to something other than the oats I eat. ( from what I am reading on this forum)

I promise my posts will get shorter...

[Rebecca2z]

wow Gabes, I just read what you wrote somewhere I ended up on this board ( I am jumping all around as fast as I can )
This is very helpful to me and I thank you !

"Magnesium and Yeast Overgrowth – (page xxviii)
A powerful trigger of inflammation is uncontrolled yeast overgrowth. Yeast produces 178 different chemical antigens in its normal life cycle. These chemicals can be absorbed into the bloodstream and set up a never-ending inflammatory cascade (gabe edit Sound familar anyone?)
Acetaldehyde is one of the powerful toxic by-products of yeast, and magnesium is required to break it down, If there isn’t enough magnesium, unopposed acetaldehyde can cause many side effects. "

[tex]

I went off the feeding tube 8 months ago because one the stuff is poison if you ask me and two it was affecting the quality of my life. The only reason I am on it again is my family & husband begged me and said they aren't ready to let me go. They felt if we can get the diarrhea under control I could go off the feeding tube again and go back to that 98 pounds and hold there with the small bites of food.

If you can do that, we can upgrade motility (and correct a likely magnesium deficiency at the same time) by carefully regulating supplemental doses of magnesium citrate. Eventually you will be able to eat more normal amounts.

So now what Tex ? How do I make this diarrhea stop ?

We'll figure out a diet that will work. Cholestyramine helps to reduce D by removing unrecycled bile acids that will cause D when they get to the colon. Approximately 40 % of MC cases show evidence of bile acid malabsorption (BAM). If it works for you, it will speed up recovery by significantly reducing the number of trips to the bathroom while the diet changes slowly heal your intestines. If you can get a script for the regular version of cholestyramine (not the lite version) it usually works better. Some products contain lactose which is best avoided, if possible.

Another Q. So people who have MC, if they go totally hard core gluten free do their symptoms of MC go away ?

We're highly sensitive to even tiny traces of gluten, so it's all or nothing when treating by diet changes. Gluten is the worst, by far, but other food sensitivities are also present, such as casein (dairy) and soy, and they also may have to be totally avoided. But gluten is the first thing to avoid, because it causes the most damage and requires the longest recovery time.

Tex

[Rebecca2z]

Gabes - Sorry to bother you again......I am on Amazon looking at the ReMag,( because you mentioned it would have less of a laxative effect, I currently have Calm powder and wow that stuff really has a laxative effect !) Anyway the bottle on Amazon says Pico-Ionic Liquid, you wrote take ReMag, picometer-size

https://www.amazon.com/Pico-Ionic-RnA-F ... +magnesium

Am I looking at the right stuff ? Is Iconic the same as picometer ? I feel so stupid....

[tex]

You're looking at Dr. Carolyn Dean's product, which is excellent, but it's extremely potent. If you respond to magnesium glycinate or magnesium citrate, or topical mag oil, you would probably be better off starting with them. If you don't respond to them, then it's time to reach for the ReMag. At least that's the way I see it.

Tex

[Gabes-Apg]

your current 'bad spiral' is very similar to many others here...

nutrient deficiencies and ongoing chronic inflammation bring on more health issues. Using things like Magnesium etc is not acknowledged or supported widely by mainstream medicine. but as you will see from the discussions here, magnesium deficiency is either directly or indirectly related to a large amount of chronic health issues.

the restrictive diet does seem a bit extreme at first, but as you read posts in the members success area you will see how many have benefited from embracing this approach to get inflammation under control and allow the gut to heal.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71

based on what you have said, cholestryamine seems a very good option to get the D under control while you fix nutrient imbalances.

happy reading and you are welcome
- we willingly share info and answer questions as we want people to be well and not spending their days in the bathroom
dont worry about long posts - I enjoy seeing members reading, researching and asking questions, embracing our suggestions to get well

[Rebecca2z]

OK Tex - well I like that starting point of using the Mag oil I already have on hand, so I will wait to purchase Dr. Carolyn Dean's product. I
for sure need to go slow and use tiny doses, I am after all at a pediatric weight.

Your comment " Eventually you will be able to eat more normal amounts."
oh yah, that is music to my ears !!


Thank You for the info on cholestyramine and the lite version, which I didn't know about.


You guys are saving me from falling further down this rabbit hole !!


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[Rebecca2z]

Gabes & Tex,
I am humbled by your willingness to help !

[Rebecca2z]

Ok, I read everything in the vitamin patch thread, there is no link to where to get them. Now I know I could google this and I see Seeking Health has a Vit D powder, but I saw a bit of info on the vit patch thread about there being no gluten ...

So I have to figure out if a vit has gluten ?? Help on this please. Thank You.

What about drops instead of patches, which I question how much you get ... So drops might be a good choice, can a person absorb them who is in a nightmare like I am in ?
https://www.seekinghealth.com/optimal-v ... 0-servings