OVERVIEW of JULIE NEGRIN’S CASE as of March 2019
(Originally posted 3/17/2019 on my home page. Reposting here to have a dedicated page for my 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. Recent CT reveals no cancer though upcoming colonoscopy will check for smaller incidence.
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). Mid-March patient noticed “mottling” on abdomen. Noticeable change in frame in recent weeks, loss of adipose tissue (glutes/hips) though weight has only dropped a few pounds - most likely due to slowed metabolism, 2 liters of IV fluids daily and oral liquid intake.
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.
Also looking for functional medicine dietitians with experience administering TPN.
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.
Every time there is a partial obstruction - it’s been happening very 6-9 months over the last few years - the diet becomes a little more restricted. Concern that next time, no food will be tolerated at all. There is so much bureaucracy in the medical system - primary care doctors say they won’t oversee TPN and gastros say I need a primary care doctor to put in orders - the diet has become limited to (the calories are rough estimates):
0-3 eggs 0-240 calories
1-2 avocados 240-480 calories
2-3 teaspoons dressing (with avocado) 100-200 calories
64 oz homemade chicken broth ~30 calories
Coconut milk / almond milk teas 100-300 calories
Various puddings, coconut ice cream 100-400 calories - some of this makes me gag now so I don’t get in as much as I should
Some days, dairy is consumed to increase calorie intake even though it causes stomach upset (but doesn’t get stuck!)
There are days where very little food is consumed because there is so much pain and calorie intake is very low on those days. The average is estimated to be around 800-1000 calories daily. This is not sustainable.
*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 and adhesions are likely culprits. 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
2,000mg Vitamin C (powder / oral)
VSL#3 probiotic powder
Metagenics GI product (mostly containing glutamine)
MCT oil 2-3 teaspoons daily
12,500 IU Vitamin D (a few times a week / capsules)
Supplements aren’t always well tolerated - integrative elemental nutrition dextrose-free is not well tolerated, pills/capsules often aren’t digested or absorbed.
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 0-3 per day in winter of 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. Used to tolerate fish 3-5 times per month but 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
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 IV fluids increased to twice a week - 2 liters each time. Without fluids, back and stomach pain is a lot worse and struggle to have BMs. The desert, dry heat of San Diego is taking it’s toll.
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 2015. Labs were fine on testosterone until winter of 2019. Dose needs to be lowered - needing a lower dose now may be due to loss of adipose tissue.
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 possible hormone fluctuations.
If you have any doctors or practitioners to refer, you can share them in THIS FORM! Thank you so much.