Success Story? Or, Maybe just a Progress Update at 10 Months

[brookevale]

I am nearly 10 months out since the MC assault began on my body. I am doing ok so I thought my story may help someone.

Background (Feel free to skip over as it is long but gives you an idea of how I got here):

I have a long history of GI issues but diarrhea was never one of them. I suffered from misdiagnosed sphincter of oddi dysfunction (my biliary and pancreatic sphincters spasm shut) for over 14 years. For 12 of those years my symptoms were severe pain under the right rib that sometimes radiated to the back and up the shoulder.

May 17, 2011 I gave birth to my third son and my symptoms became disabling. I had 24/7 nausea, vomiting, unintended weight loss, and pain that now spread across my abdomen. All of my tests were normal. Since all tests were normal, my local GI doctors told me I had post partum--basically I was crazy--and refused to perform the one test that would diagnose me with sphincter of oddi dysfunction--an ERCP w/manometry. Within 9 months I went from 135 lbs to 95 lbs and had to get a g/j feeding tube to bypass my pancreatic/biliary region.

August 2012, over a year since my severe symptoms began, I finally got diagnosed at the University of Minnesota--1,200 miles from home. The doctors tried to help me with an ERCP and dual sphincterotomy (cut both sphincters) but I ended up with acute pancreatitis and an e coli sepsis infection. The doctors told my mom I was likely going to die. Well, I didn't which was the good news. The bad news was the procedure didn't work.

October 2012 a local surgeon performed a major laparotomy and sewed my biliary and pancreatic sphincters permanently open. Two weeks later I had a 106 degree temperature, rigors, adrenal failure, and another septic infection--this time enterobacter. I was given heavy doses of Levaquin (a fluoroquinolone antibiotic that is neurotoxic) and steroids. As a result, I suffer from fluoroquinolone toxicity. I couldn't walk for 9 months as the Levaquin destroyed my tendons. To this day I have multiple chemical sensitivities and photosensitivity, severe central nervous system problems and neuropathy. BUT, for a year my GI system was ok and I gained all of my weight back.

November 2013 I caught strep several times from my 3 year old and was put on amoxicillin and then omnicef. Around this time I got the flu shot, which I regret as thimerosol is a neurotoxin. Suddenly I developed meningitis-like symptoms but was cleared from actual meningitis. To treat the severe headache, jaw and neck pain, I popped countless ibuprofen, naproxen, and Nabumetone (a powerful NSAID).

MC Assault Day...December 28, 2013 (I will never forget the day) I started the day with the most painful, relentless diarrhea I had ever experienced. I had severe thirst--beyond diarrhea dehydration. I drank water non-stop but could never quench my thirst. Also, I was urinating more than I was taking in. My intestines were obviously not absorbing water at all. I even talked with several doctors about prescribing me an anti-diuretic. None took me seriously. Then came horrible vaginal, bladder, urethra, and pelvic symptoms. I also had a constant and intense itchy feeling under my skin, as well as horrendous anxiety/panic. All of my stool tests were negative. My bloodwork was perfect. By March my GI doctor ordered a colonoscopy and endoscopy. He took biopsies to look for microscopic colitis. The tests came back normal (story of my life). Since I had all of the classic, hallmark signs of microscopic colitis and even though I tested negative from a colonoscopy biopsy, my GI doctor diagnosed me with MC, most likely collagenous. Tex and my doctor told me I could be so early in the MC timeline that biopsies didn't pick it up. Or, the doctor failed to biopsy the affected region.

April 2014 my GI doctor prescribed entocort. It gave me bad side effects--mostly dizziness. I stuck it out and the entocort helped form some loose normans. I still did not feel well and this whole time I was rapidly losing weight. Some mornings I'd get on the scale and drop a pound from the day before. It was frightening. I had good intentions of sticking to the diet recommended in Tex's book but yes I cheated often. I could not afford the Enterolab testing. Even when I did stick to mostly meat and veggies, I felt worse. In addition to Tex's book, I read the book, Fiber Menace. Finally something clicked. I realized the more veggies I ate, though they were often overcooked, the worse my symptoms. Same went for nuts, seeds (even in butter form), and peanut butter. It seemed anytime I ate something with even a bit of fiber or high residue, I'd drop a pound.

June 2014 I started seeing a Naturopath. I went to a very low fiber low residue diet. I still ate meats and a very small amount of cooked veggies but no more than once a day. I ate rice and dairy, though I am sensitive to dairy. I can't do soy. I was a complete failure at eliminating gluten and sugar. I was on a mission to gain weight. My naturopath prescribed low dose naltrexone and I went off Entocort. Around this time, my neurologist prescribed Lamictal (a sodium channel blocker) and Lyrica, both for neuropathy. Finally I started gaining weight and feeling better. I had real normans. Around July 2014 a new GI doctor wanted me to try Prevalite (cholestyramine). It made me nauseous and gave me a bloated feeling, but I drank a little each day as it is well-documented to clear out toxic bile.

Today, September 28, 2014: I have no clue which or possibly all of the above did it, but I went from 103 lbs to 122 lbs in the course of five months! I still have normans. I am not 100%, maybe 75%. I still take the meds, except the Prevalite. I didn't like the side effects. I have been gluten free for 2 weeks and am seriously committed to it. I am detoxing from sugar. I eat healthy--only organic meats, vegetables, fruits, and non-soy non-gluten condiments. I don't eat out and if I do I stick to chicken or salad.

Things I've learned (this is for me, I am not saying it is for everyone):
-Tests are flawed.
-Doctors are flawed. If you don't have a compassionate doctor willing to work with you till the end, fire him/her and get a new one. I am on my 4th GI doc and thank God I haven't stuck with the other three. I'd be dead.
-Fiber in any form is my enemy. Keeping it at a minimum is essential.
-In a flare and even the first month of normans oil--any oil (coconut, MCT, olive, flax, etc.) worsened my D and weight loss. Many suggested adding these to get fat and increase weight but it backfired everytime on me. I did better with eating the fat on chicken, choosing fatty pieces of meat, like chicken thighs vs. chicken breast, turkey leg, and having the occasional bacon.
-I could never afford the food allergen test by Enterolab but figured out I was sensitive to soy, sugar, eggs, and dairy. I don't have celiac disease but DO have the celiac gene. It is most likely I am gluten intolerant or gluten sensitive.
-I cannot ever take NSAIDs again. I have had a toothache for 3 weeks and ran out of codeine. I took an aspirin and got severe abdominal pain and diarrhea. As if I didn't learn my lesson, a week later I tried an ibuprofen with the same result. NSAIDs are equivalent to poison for me.
-Tex knows best when it comes to changing our diet, but we can't get so restrictive that we endanger our lives by significantly limiting calories, protein, and fat. Once you lose muscle mass it takes a long time and a lot of work to get it back. I was on the road to a feeding tube again. Thank God I dug myself out of that hole.
-Improving gut motility is essential. The low dose naltrexone helped with inflammation and gut motility. I think the lamictal helped gut motility too as I could "feel" the difference within an hour or two of taking it.
-Insist on getting comprehensive bloodwork--including vitamin panels. I found out I was a bit low in vitamin D. People touted magnesium to me. My blood levels were normal for magnesium but I took it anyways. Every type of magnesium I tried gave me diarrhea. No thanks.
-Be careful with supplements and herbs. I found out the hard way that every herbal tea I drank made my symptoms worse, especially the diuretic issues. I tried MSM, collagen, glutamine, and more. They did nothing.
-Ok, so I said to be careful, but if the doctor won't prescribe something you know in your gut you could benefit from, look to alternative supplementation under the guidance of a naturopath. I was urinating every hour--sometimes every half hour. Turns out that Valerian is a natural anti-diuretic. Now I am urinating normally and feel hydrated.
-Calcium tablets seemed to help with binding.
-I am on prescription pancreatic enzymes and increased them during this time. I think they helped with the malabsorption. Not sure if any of the over the counter enzymes are as good as the prescription kind.
-Some people do well on probiotics. When I was flaring probiotics definitely made me feel worse. I tried five different brands and all either made me sick or did nothing. I am considering trying Prescript Assist. I am actually not supposed to take probiotics as my duodenal contents refluxes into my bile duct. But, my current GI doc seems it's ok to at least try it.
-At about 4 months out I forced myself to do gentle yoga dvds. I just joined a gym and feel exercise helps my digestive system.
-Be patient. Recovery is a full-time job.
-Never ever give up (NEGU)!
[/list]

[Deb]

Wow! Quite a story. I am glad you're doing better and hope and pray that continues. Deb

[tex]

That's an incredible story Brooke! You've really been through the mill. I too am very happy that you're finally making good progress.

People touted magnesium to me. My blood levels were normal for magnesium but I took it anyways. Every type of magnesium I tried gave me diarrhea. No thanks.

Actually, blood levels of magnesium will always be in the normal range until magnesium becomes so depleted from the tissues of the body that one's life is at risk (magnesium is an electrolyte). Magnesium is so important for so many vital body functions that the body automatically pulls magnesium from the cells as needed, in order to make up for any shortfalls in the diet, so that the blood level will remain normal. Therefore the blood test for magnesium is worthless, but it's the one that virtually all doctors use (bless their well-intentioned but ignorant hearts. ). The proper test for determining magnesium levels is a tissue test.

You apparently missed all the discussions over the past few months (led by Gabes) about the safe way to get the magnesium that we need — use a topical magnesium oil, or soak in Epsom salts (or a foot soak). Oral magnesium must be kept at a minimum for most of us, especially while we are still recovering. It's really not necessary to test for magnesium, because most (probably all) of us are deficient, unless we use a supplement (preferably topical).

Thanks for taking the time to write such a detailed, illuminating, and helpful post. I hope that you will soon be back to 100 %.

Tex

[humbird753]

Wow, Brooke, you sure have been through a lot. Praying your progress continues. Seems like we all have to learn to become our own doctors.

Paula

[brookevale]

I have thought about trying the alternative methods for magnesium supplementation but have been frightened of the dreaded D coming on. I will look into the magnesium oil or I could just do the epsom salt foot bath. Because of my private area problems I can't tolerate taking baths. I do take a 1/2 cap full of Good State trace minerals every other day. I forgot to mention that. Thanks!

[CathyMe.]

I have followed your story from the beginning and I'm so happy to hear you're doing well!

[Leah]

HI Brooke. It's great that you have made progress, but man, what a road trip you've had to take to et this far. I use Ancient Minerals magnesium lotion. It does seem to help me with my symptoms, but I think it's most helpful for people who have histamine/mast cell issues. I hope you continue to feel better.
leah

[lisaw]

Hi Brooke:

Thanks for sharing your update. I am so glad you have improved so significantly, and hope you continue to get stronger and feel well.

Lisa

[Lilja]

I use Ancient Minerals magnesium lotion. It does seem to help me with my symptoms, but I think it's most helpful for people who have histamine/mast cell issues.
leah

Hi Leah,

I use Magnesium Oil each morning, 5-6 sprays on my stomach and 6-8 sprays on the inside of my thighs. How long should it stay on the body, before I can get dressed? Does it absorb quickly or slowly? The skin feels greasy long after spraying...

Lilja

[brookevale]

I swear I spoke too soon and I should have knocked on wood. I am in a flare from the one aspirin and one ibuprofen I took for the severe tooth pain. I feel so stupid. The first time I took the aspirin a week and a half ago I only had D for a day. I took the ibuprofen on Saturday and am now on day 3 of D (not terrible, but bad all the same) and severe abdominal pain. Well, at least I know what works for me and that this too shall pass. I just hate being in it. I have been perfect with diet too. I can't do anything today except rest with my heating pad. And it's my Birthday! Uggg. I did add a bullet to my story about oils and how I couldn't tolerate any during my 6 month flare. I tried MCT, coconut, olive, flax, grapeseed, pretty much every oil and got worse.

[lisaw]

2 steps forward, one step back...
Sorry Brooke, but hopefully it will pass soon, and you will be back to where you were.

Lisa

[Grahm]

Brooke,

Happy birthday, hope this last flare goes away soon.
So glad you are doing better over all.

Love,
Connie

[Zizzle]

Happy Birthday Brooke!! Sorry about the setback. I'm in one too...got glutened a week and a half ago during a well-deserved night out with the girls. It was only cross contamination, but now I get a week+ of D and tummy pain.

Question about the enzymes you are taking:

-I am on prescription pancreatic enzymes and increased them during this time. I think they helped with the malabsorption. Not sure if any of the over the counter enzymes are as good as the prescription kind.

Why would a doc prescribe these enzymes? How did they know you were deficient? Does your pill bottle break them down into specific ones, or is it just one?

I've been wanting to read "Autoimmune: The Cause and the Cure." The author states (with tons of evidence) that autoimmune diseases are caused by an absence of D-nase 1 enzyme, one of the enzymes produced by the pancreas. Do your prescription enzymes address this deficiency? I take regular digestive enzymes and gluten enzymes with large or restaurant meals.

[Leah]

@Lilja. I use a lotion ( not an oil) and just keep it on all day. I apply to calves, feet, and small of my back.

@Brooke. I'd say Happy Birthday, but it doesn't seem like it's too happy :( ( I'm lucky. I can take Aleve with no side effects) Feel better soon.

Leah

[UkuleleLady]

I swear I spoke too soon and I should have knocked on wood. I am in a flare from the one aspirin and one ibuprofen I took for the severe tooth pain. I feel so stupid.

Don't feel stupid Brooke, we all have setbacks. It takes a long time to heal from this. Healing for me has been like a stock market chart (trending up, but with pullbacks). Every time I think to write a success story, I have a little setback :)

I have come to accept that most days I am well, some periods I am not well. But mostly I am well and that is worth a LOT!

I'm glad to hear that you have enjoyed a good period of wellness. It will return again.

Nancy