My Medical Case




PATIENT HISTORY: 47 year old female patient with Lynch Syndrome, a genetic cancer disorder. In 2014, patient was treated for three unrelated cancers: Stage IIC or IIIC ovarian (lymph nodes were not removed), Stage IA1 endometrioid endometrial adenocarcinoma, early stage colon adenocarcinoma, no residual colon carcinoma, negative lymph nodes (65 were removed for colon). Also removed: most of colon, ovaries, uterus, omentum, appendix (and nerves/blood vessels, etc.) Additionally, three surgeries to remove melanoma in leg (in situ) in 2011 with no recurrence since. Severe case of Ulcerative Colitis, later diagnosed as Crohn’s, from 1989-1997 - took high doses of prednisone up to 60mg daily on and off for 9 years. No recent data reveals cancer.

OVERVIEW OF RECENT SYMPTOMS as of 3/17/19: appetite has lowered and abdominal pain has worsened since mid-February 2019. Sharp and dull pain have increased and patient has been limited to 0-3 eggs per day. Powdered nutrients and IV nutrients have been tolerated. Elemental nutrition causes diarrhea (which isn’t an unusual symptom). ~March 14 patient noticed “mottling” on abdomen. Noticeable change in frame in last 2 weeks, loss of adipose tissue (glutes/hips) though weight hasn’t dropped significantly most likely due to 2 liters of IV fluids daily and oral liquid intake. No indication of cancer in recent screenings, however, no one has been checking blood for tumor markers and last abdominal imaging was in Oct 2016.

SEARCHING FOR: cutting-edge imaging tests that can evaluate geography of intestines / scar tissue / whether blood vessels are being restricted / more details that will reveal source(s) of GI dysfunction. And doctors / researchers / inventors that have developed sophisticated methods for treating severe GI issues and/or improved adrenal function.

Active problems in order of severity:

POOR DIGESTION :: abdominal pain and struggle to empty bowls has restricted diet to mostly liquid (see below for details). Trouble with BMs, often need to go but nothing or very little comes out which means visits to bathroom can be 30-40 times a day. Sometimes watery diarrhea (that’s a good day), other days, nothing but tiny amounts during each visit. Can’t lay down until bowels have emptied, often do enemas at night. Motility is either too slow, or sometimes fast (likely due to missing colon). Sometimes entire pills aren’t digested*. Other times, food seems to get “stuck” somewhere which causes pain.

Had bowel obstruction in June, 2015, hospitalized for 5 days. Diet keeps getting more and more limited since that time. Patient hates hospital so if she is obstructed she puts herself on bowel rest and IV fluids like she’d get at the hospital. 

*trouble digesting gel capsules which makes it difficult to take supplements, which is worrisome since diet is so limited. Been testing different liquid and powder supplements.

DEHYDRATION :: due to loss of colon and prednisone use at young age, chronic dehydration is significant issue with patient needing 1-2 liters of saline per day. (Addison’s Disease has been added to chart.) Low blood pressure (sometimes as low as mid-90s/50s) unless IV therapy is consistently administered. Pre-surgery typical BP 120/80.

PAIN :: abdominal pain, back pain, dull ache and also shooting pain, muscle spasms, trouble sitting for long periods of time (folding the intestines is painful). So far, no meds for pain because of concerns it will slow down intestines and patient prefers to avoid strong medications. 

FATIGUE :: feel exhausted a lot of the time, sometimes a burst of energy here or there but mostly lack of stamina, can’t get out of bed some days. Need bed rest 2-3 days per week.

SLEEPING :: sleep ok now with progesterone, melatonin, herbs, benedryl but have struggled with this a lot in the past few years especially with stomach pain/need for bm causing 3-8 wake-ups per night.

MENTAL HEALTH :: struggle some days, do all right other days. So far, no meds.


-Several gastroenterologists have noted: “small intestines are in pelvic cavity and jammed up against rectum” and “what’s left of sigmoid colon is folded over.” Defecography test showed “significant pelvic dysfunction.” UW motility gastroenterologist said nerve damage is likely culprit - she was also only MD to say that scar tissue could be a major problem. Enterocele in colon, telescoping of some intestine have all been noted in my chart by gastroenterologists. 

-Dehydration from low aldosterone and missing colon makes it hard to move food through GI tract. Daily IV fluids help facilitate BMs. 1-2 liters of saline per day. 1 liter of amino acid per week. 

-Stool is always very narrow / dust / small pellets


10ml DHEA (from compound pharmacy)

15mg hydrocortisone (from compound pharmacy)

1.5mg estrogen (oral) .5mg (cream from compound pharmacy)

15mg testosterone (cream from compound pharmacy) 

250mcg aldosterone (from Canada)

200mg progesterone (oral capsules from compound pharmacy)

50mcg levothryoxine (oral from regular pharmacy)

¾ grain naturethyroid (oral from ND)

Fluticasone in the hot months - tiny amounts to help reabsorb fluids during hot weather. Need for IV fluids has slowly been increasing since daily infusions began in May 2017. Winter of 2017, patient needed only 1 liter per day of fluids. Winter of 2018/2019, patient needs up to 2 liters per day in order to have bowel movements, lessen pain and keep a steady BP.

Supplements - taken orally throughout day as to not overwhelm GI

12,500 IU Vitamin D (oral)

2,000mg Vitamin C (oral)

Fish oil (oral)

Curcumin (oral)

Electrolytes (oral)

Salt pills (oral)

Liquid vitamin supplement

VSL#3 probiotic powder

GI Revive powder

Melatonin and other herbs for sleeping (I break the capsules open and dissolve in water)

Current interventions:

IV HYDRATION :: 1-2 liters daily of IV saline, one bag of amino acids. They also help with back pain and abdominal pain (which is way worse when I’m dehydrated).

MOSTLY FULL LIQUID DIET :: high omega-3 eggs - patient used to tolerate up to 10 eggs per day but that has lessened to 3-5 per day in winter of 2018/2019 - some days no eggs at all due to pain, homemade chicken broth twice daily (made with over 10 nutrient-dense vegetables), tumeric tea made with coconut milk, digestion-related herbal tea, coconut bliss and dairy-free pudding for calories. Can tolerate very small amounts of fish - must “clean out” the intestines frequently otherwise food gets stuck though no fish since January 2019. Oral hydration: 1-2 gallons of fluids daily, mostly with salt and/or a little honey so that body absorbs it better. Lost weight initially but have managed to maintain weight, although body has changed shape. Less adipose tissue, more muscle due to extensive movement needed to move food through intestine. Winter of 2018/2019 number on scale doesn’t move much but hips and glutes are noticeably smaller to the point that pants now are falling off. 

VISCERAL MASSAGE :: 1 visit to practitioner per week to adjust intestines and relieve pain. Also nightly self-administered massages with castor oil.

ACUPUNCTURE :: a couple times per month to help with pain and BMs.

SALT BATHS :: 1-2 hour baths w/ epsom salts 2-3 times per week to rehydrate, help with BMs. 

WALK :: walking and belly dance moves help (even when exhausted) help move food through intestines and reduce pain. If patient is too tired to walk (often 1-2 times per week), then no solid food like eggs can be consumed as it causes too much pain to lay in bed with food in intestines.

YOGA :: yoga and stretching every evening for 30-60 minutes to help move food through intestines and prevent pain. 



1989 - Ulcerative Colitis (now charted as Crohn’s Disease) severe pan-colitis, high doses of prednisone on and off for 9 years to keep it under control, allergic to sulfa drugs (sulfa caused lupus like symptoms and high ANA)

1992-1997 - actively worked to heal UC via diet, acupuncture, TCM, herbs and supplements. Started studying nutrition on my own in 1991 and got a master’s in nutrition from Bastyr in ‘99.

1997-2010 - UC in remission, no meds, no symptoms, a tiny flare in 2010 that went away with Chinese herbs and diet change and a little inflammation showed during last colonoscopy - no blood in stools since 1997.

2010 Nov/2011 Jan  - three melanoma surgeries in leg - in situ but large area 

2013 Dec - found first cancerous colon polyp, ovaries lit up during PET scan

2014 Feb - found large ovarian masses during ultrasound and second colon cancerous polyp

2014 March - had surgery to remove most of colon, uterus, ovaries, appendix, lymph nodes for ovaries weren’t removed so it wasn’t officially staged, not sure why it shows as stage IIC in my chart, omentum was clean though, not one speck of cancer in colon or 65 lymph nodes

2014 April-Sept - 18 weeks of Taxol, 7 weeks of Carboplatin (oncologist in San Diego claimed that 18 weeks of Taxol was better for clear-cell ovarian cancer, Swedish doc said he’d never heard of that protocol)

2015 May - sudden loss of energy, couldn’t get out of bed, discovered infected root canal, took some antibiotics and had root canal/tooth removed a few weeks later (theorizing that this is when adrenals went kaput - root canal might have been the straw that broke the camel’s back)

2015 June - had bowel obstruction, hospitalized for 5 days, NPO for most of it, resolved

2015 July - went on modified diet, could tolerate mashed foods fine, limited fiber

2015 August - discovered dehydration was becoming a serious problem (which coincides with when adrenals probably stopped producing sufficient aldosterone). Started getting 2 liters once a week along with visceral massage when I could find a practitioner. Still working and living independently in San Diego at this point.

2016 Winter - digestion getting worse and worse. Every “bout,” diet has became more limited which is worrisome (what will happen next?) Dehydration is so bad by now that I had to increase IV fluids to twice a week - 2 liters each time. Without fluids, back and tummy pain is a lot worse and I’m unable to have BMs. The desert, dry heat of San Diego is taking it’s toll on my dehydrated system. 

2016 Spring - dry foods have been completely eliminated from diet, no energy. Had to quit work in San Diego and move in with parents in Seattle. Too fatigued, too many appointments.

** Discovered estrogen was 7 in March and testosterone was ZERO in May

2016 June - started testosterone for the first time. Started at very low dose. Been on 15mg since December which seems to feel ok, will probably stick to that dose for awhile and see how it goes.

2016 Fall - things get even worse, tons of pain when eating. Could barely tolerate liquids on some days. ER said no visible bowel obstruction but I hadn’t eaten food in several days so that wouldn’t show up. Had defography that showed small intestines “smashed up against rectum” and what’s left of my sigmoid colon is “folder over.” Stomach emptying test came back “normal” although the radioactive substance may have caused diarrhea so not sure how reliable the results are. 

2017 Spring - present managing on mostly liquid diet but my days are completely taken over with appointments, interventions, trying to poop, trying to prevent pain, trying to get enough calories and managing my medical case.

2019 Winter - diet keeps shrinking while IV saline needs have are slowly increasing. Traveling beyond 3-4 days is not possible at this time. Cognitive function has been impaired due to reduction of quality calories and possibly low estrogen. 

This is NOT a life: living with my parents, not working, and barely able to eat and go to the bathroom at the age of 47….PLEASE HELP ME FIND SOLUTIONS TO MY CASE so that I can stay alive - and hopefully, improve the quality of my life!

Thank you for reading this far!!!

I don't like being labeled 28w

I don't like being labeled 28w

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Years earlier, at my very first office job, working with some of the most powerful Jewish lawyers in Seattle at only 17 years old, I learned a powerful skill: never hang up the phone until you get what you need. 

My job was to get information from general contractors to protect our sub-contractors in the event of a lien. At a very young age, I had to develop sophisticated persuasion skills. In the beginning, I’d slump over to my boss, “I couldn’t get it.” He’d reply, “Call ‘em back” without looking up for his computer screen.

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Looking back, my slight figure and short hair probably made me safer during those years. It was a hell of a lot safer than when I grew boobs and ass later.

And treated like a toy that men thought they could grab and poke.

There are a bunch of reasons I like having super short hair now - it’s low maintenance. I get why soldiers have short hair. One less thing to distract me from survival. 

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Since my friend and I knew him, it felt safe to go back to a mutual friend’s house late at night with him and a couple of our guy friends.

I said what I often say to a new date to protect myself: no sex but we can mess around. 

I set very clear boundaries before going back to a house with a good girlfriend and three guys I'd know for 17 years? It felt like the safest possible scenario. 

And ended up being the worst.

He took off my clothes fast which I was NOT okay with.

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I didn't want to marry 25w

I thought there was something wrong for me for many, many years. 

This photo was taken at my going away party in 2001 before I moved to New York City. I was 29 years old and many of my friends were settling down in Seattle.

After years of intense adulting - the kids, autoimmune disease at age 17, serious relationships, all I wanted to do was have FUN and WORK. 

Looking back, I feel shame that I ran away from commitment so many times. On the other hand, I knew I wasn’t mature or ready for anything serious so at least I didn’t drag anyone into my mess. 

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I was scared to negotiate 24w

"I want to discuss increasing my fee," I said over the phone to the client I'd just landed. When I left my secure, high-profile job as a Director of Culinary Arts in 2008 in New York City, I was nervous to start my business. But this was my lifelong dream.

When I was a kid, I wanted an office like J.R. on Dallas.

It wasn't an easy dream to achieve! I was in NYC in the highly competitive food field that had recently "gone Hollywood."

The recession didn't help. Wealthy people with more resources were entering the trendy food field, bumping us hippies out. New bloggers were mastering social media a lot faster than my old ass. iPads came out the same year I published my hardcopy cookbook.

The world was changing and quickly. 

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I've helped raise good men 23w

I've helped raise good men 23w

"Bitch!" the guy laughed as he said it to me. My guy friends froze. We were standing behind a bar, in the late nineties. This man was a friend of my friends.

One of my guy friends looked at me and then very slowly said " don't say that to Julie Negrin." The mouthy guy muttered sorry. I gave my friend a thank you and a smile. 

I never had to say a word. My friend did it for me. 

I KNOW I've irritated all the men in my life. I'm well aware that I'm annoying people now with some of my posts. 

But silence doesn't result in change.

"Awww Jules, let it rest!" my cousins and brothers and brothers friends would say when I called them out on a sexist remark when we were young.

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I never had a childhood 22w

I was put to work before my first memories even started. I changed diapers - cloth ones with pins, bathed kids, spoon fed them, gave them bottles, burped them, cleaned up baby vomit AND kid vomit (so much fun!), stopped tantrums - I could go on and on. By the age of 8 years old, I was allowed to care for newborns. I was the oldest girl of eight kids - four in my family and four cousins across the street that were all younger. My cousin Alex was born when I was eight. I had so much child-care experience by then, my mom and aunt felt comfortable with me taking care of Alex.

Most people now won’t even let their 8 year old pack a bag for a trip! I was ALLOWED TO TAKE CARE OF A NEWBORN.

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I've always been loud 21w

I've always been loud 21w

I told my mom recently, "there a lot of women who tell me that they struggle to speak out against injustice because they were taught to be quiet, and..." I paused and said "nice?" We both just stared at each other trying to comprehend that.

ALWAYS being nice even if someone is doing something wrong?

I was never taught that. Never modeled that.

None of us buy a car without my mom - even my brother - because she is so good at negotiating, doesn't tolerate any bullshit.

THAT'S what I grew up with.

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Calling women crazy is lazy 20w

Calling women crazy is lazy 20w

I showed up to a NYC bar in my purple pimped out coat. It was around 2000.

My guy friend checked out my outfit- lord only knows what I had on underneath - and looked horrified. We’d known each other a long time. And I’d gone through a lot of fashion phases. But apparently this was too much for him. 

I like expressing myself through my clothing and hair. The only thing I’ve always been certain of is that I don’t want to be the same next year as I was last year. 

My friend was too polite to call me crazy but I could see it flash across his face. 

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He assumed I'd be his girlfriend 19w

He assumed I'd be his girlfriend 19w

He patted my ass and said “we’re going to have a great summer!”

It was March. We were at the end of our 3rd date. We’d gone to sushi and my friend next door was eager for my leftovers.

i was debating whether I wanted to hook up with him that night or move on. He wasn’t very smart. Which isn’t a problem for me if we laugh and have fun. But we weren’t doing either.

This was early on in my NYC days. I was young. Sex in the City was the hottest show on television. I wasn’t exactly eager to find a boyfriend.

I was immediately annoyed that he assumed he could have me without asking if I was into it. Or wooing me further.

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I called myself a leader 18w

I called myself a leader 18w

“How DARE you call yourself a leader?” a woman wrote on a FB thread in October as others piled on attacking me, screaming at me about things that weren’t even relevant to the original post. I had suggested we break down into committees and work on different issues. But it didn’t matter what I wrote. They wanted to attack!

They saw a woman who was confidently trying to lead and they didn’t like it. They hadn’t liked it for months. It didn’t matter to them how intersectional I am - or how much I share my mental health status publicly - or that I’m disabled and could be dead within a few years. 

These people would definitely yell at a dying woman. 

I was first initiated into the lovely world of online bullying when I joined nutrition list-serves in 2008/2009. I could not have been in a better industry to prepare myself for cruel behavior on the Internet. 

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I felt like a loser 17w

I felt like a loser 17w

I didn’t plan on being childless. I knew I didn’t want a traditional life. But the details were fuzzy, I had conflicted visions in my head. 

Though, I have no idea who I’d be without kids *somewhere* in my life. 

I’ve been taking care of them since I was 6 years old. I grew up with essentially 7 siblings (3 siblings, 4 cousins across the street). 

I was a kids and teen cooking teacher for 20 years. I have 8 nieces and nephews, 16 if you count my cousins’ kids. 

And yet none of that is enough in our culture!!

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I promised to not forget 16w

I promised to not forget 16w

When I was 12 years old, I made a pact with myself that I wouldn't forget what it felt like to be a kid. I promised myself I wouldn't ask kids dumb questions or become a clueless adult. I forced myself to stop the veil that was threatening to cloud over my consciousness as my body matured.

(And yes, this MAY also explain why I've been such a Peter Pan all these years but that's a WHOLE other writing series!)

As a kid, the thing that bothered me the MOST was how often I was underestimated by adults. Later, I was irritated by how I was underestimated because I was a woman.

In fact, I literally have no memory of NOT being underestimated.

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I did it the hard way 15w

I did it the hard way 15w

My friend and I were sharing a cab to mid-town in NYC. I muttered something about how nice it would be to stay in one of the fancy hotels we were driving by. He said, in all seriousness “you could” and gave me his pointed stare that said a million more words than he would actually utter.

We’d had enough long, drunken conversations at our downtown bar for me to understood what he was saying. I was outgoing, in my early 30s, had a master’s degree, people found me funny. My hair was still red, my body attractive enough to waltz down to the Meatpacking District perusing the crowd until I met a sweet Wall Street Banker who would buy me a multi-million dollar penthouse.

I’d never have to worry again.

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I taught teens how to cook 14w

I taught teens how to cook 14w

"And now we're going to EMULSIFY. Can everyone here say E-MUL-SI-FY?" The children dutifully repeated me.
It was a 'Parent and Me' cooking class at PCC here in Seattle for 4-5 year olds, roughly 10 years ago.

"We're going to squeeze a little lemon juice and dijon mustard." One of the parents gave me a look like "no, no mustard for my kid!" I ignored her pleading glances and squirted some into her kids container and gave her a look back that said "zip it." Her kid kept stirring and didn't complain but the parent remained tense.

"As we pour the oil into the mixture of lemon, garlic, mustard, and honey

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I met Marianne Williamson 13w

I met Marianne Williamson 13w

I couldn't afford to attend the conference so I volunteered for it instead. It was 1997, Ram Dass had just suffered his stroke and could not speak anymore which had the staff abuzz. It was a gathering of the biggest authors in the spiritual/metaphysical field. I had read many of them but I was really excited about one.

When I was still in a college, I discovered a book, A Women's Worth by Marianne Williamson on the bargain table at the University bookstore. I loved that book. I still love that book. It's one of the few I've carried from city to city, apartment to apartment and kept by my bedside. She spoke about women finding their voices, speaking up. 

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I'm treated like an idiot 12w

I'm treated like an idiot 12w

For years I’ve wondered: Why am I treated like an idiot because I have a vagina? If you removed everything else and put my brain in a tank that gave out information, would it be taken more seriously than if it was housed in this body? (Answer: DEFINITELY.)

When can I live in a world where some schmuck at a store doesn’t look me up and down, linger on my breasts, and patronize me when I ask a question?

How do I get treated like I’m as smart as any man?

I launched two different websites, posted over a dozen videos that got thousands of views, been on the news, spoke with senators, helped mobilize activists, raised 14K, launched ACA Sign Up Events, hired staff

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I drank to forget story 11w

I drank to forget story 11w

I like to party. The first I got drunk I was with a friend from high school in my parents basement. I loved it. 

My head was always too full of questions, ideas, stories, confusion, irritations. And the booze helped it disappear.

I was starting to notice how men looked at me. Not boys my age. But MEN, eyeing me up and down, ogling my red hair, my breasts. 

We live in a world where a DOCTOR is allowed to FINGER little girls

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He slithered his arm around me 10w

He slithered his arm around me 10w

And said, “See, I can touch you whenever I want” as he groped my breasts while spooning me from behind in bed.

We were already broken up. But he clearly wanted to prove something. Tears streamed down my face.

I couldn’t believe this was happening to me. Julie Negrin! Tough girl! Badass!

I wish I could share the next part of the story by saying I hopped up and screamed at him to get out!

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