The UNREST of Chronic Fatigue Syndrome

We all have memories of things or times that we cling to from our childhood that fill us with nostalgia. For me, some of those things include the tv shows my mom watched. I've always had an adoration for the shows MASH, Golden Girls, Designing Women. I don't have distinct memories of these as a child, I just know I watched them with my mother and that adoration carried through into adulthood. When I watch these beloved characters of these shows, I'm reminded of my childhood - a time before I was sick.

Golden Girls resonates with me as the four women in their golden years tackled everyday issues and brought light to important issues - even that of invisible illness and rare disease. I believe the first time I heard of Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), it was through Golden Girls as the character Dorothy was diagnosed after seeing multiple specialists and even dismissed as being stressed and old until one day she finally received the correct diagnosis. This episode, Sick and Tired, aired in 1989 and yet there still isn't enough known about this severe invisible illness. Individuals with ME/CFS are still at risk for being treated as though their symptoms are psychological in nature not biologic.



Jennifer Brea and husband, Omar

Jennifer Brea shows us an eye-opening yet terrifying glimpse into the world of ME/CFS in her film UNREST. Jennifer started to experience symptoms of ME/CFS approximately 5 years ago after having a high fever. Like others experiencing difficulty obtaining a proper diagnosis, she saw multiple specialists and was diagnosed with Conversion Disorder by her neurologist before the ME/CFS diagnosis. Seeking answers to her symptoms, she started documenting her daily life and began networking with others in the ME/CFS community around the globe.

ME/CFS tends to develop after an infection and is more prevalent among women than men. It's a spectrum disorder meaning one can have varying levels of functioning ability and severity of symptoms. With any invisible illness, some individuals are left bedridden while others are able to appear to function without issue in their daily lives and one day is not necessarily like the next.

Symptoms include:

• Significant physical or mental fatigue
• Post-exertional malaise
• Debilitating pain
• Sleep and cognitive dysfunction
• Neurological impairment
• Sensory sensitivity
• Severe immune dysfunction

In UNREST, Jennifer shares not only her story but also those of others she has connected with online. We're reminded that invisible illnesses share commonalities across diagnoses - we're often mistaken for healthy and fully functioning, we're often judged for what others do not see as we hide behind closed doors in the comfort of our homes to recover from our symptoms, particularly during a flare. We find common ground and belonging online where we can reach others who are hard to find in person due to the distance among us and the physical demands that are required for travel.

Jennifer Brea researching connections with ME/CFS

National Organization for Rare Disorders considers ME/CFS a rare disease yet 15-30 million individuals around the world are estimated to have this disease. Like many of us with invisible illness, Jennifer turns to the internet and others with ME/CFS for possible remedies to help reduce her symptoms. She does find some remedies that are helpful in the management of her symptoms but remains captive awaiting for more scientific advancements for treatment. Funding for ME/CFS remains at a low level further hindering the scientific discoveries and treatments necessary to better treat this rare disease. With the help of others, protests were arranged throughout the world to raise awareness to the "missing millions" of individuals with ME/CFS and the need for more research funding.

For those of us with an invisible illness, I believe we can relate to one another without having the same diagnosis. We may share symptoms but we share much more than that. We share the pain and heartache, the physical and financial burdens, and the upheaval of our lives. We share the stigma of invisible illness that remains misunderstood by others outside of our illness communities.

Together we are stronger and louder, regardless of the diagnosis. I encourage you to watch UNREST and look into the world of ME/CFS so that we may better understand and improve our ability to advocate for rare disease.

FAP and Lynch Syndrome Conference

The University of Michigan sponsored a Hereditary Colorectal Cancer Family Day this November in Ann Arbor, Michigan. This wasn't the first year for the family day, but it was my first year to attend. I asked my mother, who also has Familial Polyposis (FAP), to attend with me. Although she was reluctant at first to travel the distance for a two-day trip, she was ultimately glad she attended.



Me and my mother, Ina. Travis, Carleton, and his son Kevin

We hopped on a plane on the morning of Friday, November 10 and made our way to Detroit, Michigan where we were warmly greeted by Kevin, a fellow FAPer and advocate for FAP and Lynch Peer Support Group in Michigan. That night we were privileged to enjoy a small meet and greet with fellow FAPers - Kevin, his father - Carleton, and Travis with Hereditary Colon Cancer Foundation.

The following morning the conference started, and we learned about a variety of topics related to Lynch Syndrome and Familial Polyposis. There were an estimated 60 attendees this year - primarily from Michigan. There was a variety of speakers including genetic counselors, doctors of Gastroenterology, Internal Medicine, Surgery, a Dietitian, and Travis.

We learned a great deal of information during this one-day conference. As a child, I had genetic testing completed to confirm my Familial Polyposis suspected diagnosis, but I don't remember ever talking to a genetic counselor afterwards. I visited with one of the genetic counselors to learn more about this area that I hear others talk about frequently. Genetic counselors help individuals gain access to genetic information and technology, genetic testing and diagnosing, and understanding hereditary conditions. They also can help an individual with a hereditary condition obtain testing and counseling for that individual's family members to determine who else in the family may have the condition.

My mother and I weren't very familiar with Lynch Syndrome before this conference. We learned about Lynch Syndrome from genetic counselors at the University of Michigan Cancer Genetics Department and Dr. C. Richard Boland, himself, who found the gene mutations responsible for Lynch Syndrome. It was interesting to learn that there are 5 different gene mutations that can occur to result in Lynch Syndrome and depending on which gene mutation one has, it will vary the type of cancers the person is predominately at risk for developing. Both syndromes have autosomal dominant inheritance meaning an individual has a 50% chance of inheriting the disease if one of their parents also has the gene.

Lynch Syndrome is also known as Hereditary Non-Polyposis Colon Cancer as the colon isn't carpeted with polyps in the 100s to 1000s as is the case with Familial Polyposis. Although both syndromes have increased risk for other cancers, Lynch has a high occurrence of colorectal cancer, endometrial, and ovarian cancers as well as elevated risk for stomach, liver, urinary tract, central nervous system, small intestine, and sebaceous gland cancers. FAP on the other hand has elevated risks for cancers of the thyroid, small intestine, liver and smaller but still elevated risks for central nervous system, stomach, pancreas, and bile ducts.



Adenomas (Pre Cancerous Polyps) can look different

Screening for cancers is essential for adequate care of Lynch Syndrome and FAP and this includes regular endoscopies and colonoscopies for cancers of the GI tract. Doctors John Carethers, D. Kim Turgeon, and John Byrn explained the colon cancer processes, technology, and techniques used for screening, colonoscopy preps, and surgeries involved for those with both conditions.



Adenomas, precancerous polyps, can vary in shape and size which is why the colonoscopy prep is so important to help the doctor properly identify polyps within the GI tract. There are various prep options including drinks, enemas, meal preps, and pills to help ensure proper cleansing preparation.

Michigan Medicine's Dietitian explained ways to help reduce the risk of colon cancer with healthy eating habits and exercise. It was recommended to:

For the best results, your stool should become light and transparent,

like the example on the farthest right

• Maintain a healthy body mass index
• Exercise for at least 30 minute a day
• Avoid sugar -energy dense foods and drinks including alcohol
• Eat a variety of vegetables, fruits, whole grains, and legumes
• Limit red and processed meats

Grilling or smoked meats have also been shown to increase risk of cancer as charred or burned meat contains carcinogens. Also, the use of a multivitamin, calcium, and vitamin d supplement have been shown to help reduce cancer risk although should be discussed with your doctor.

As genetic counseling plays an important role in identifying hereditary conditions, it is also important for communicating with one's family members for their own genetic testing. We heard from a genetic counselor and a patient panel about their experiences talking to their family members about genetic testing and the assistance received from genetic counselors with family members.

Travis, with Hereditary Colon Cancer Foundation, shared his experience with FAP and ways to advocate for awareness and education of the hereditary colon cancer syndromes. Dr. Elena Stoffel closed the conference with learning about medical advances to prevent the need for chemotherapy such as immunotherapy and gene therapy.

The University of Michigan, Michigan Medicine Department made registration available for a research study of microbiome identified through one's stool and a genetic registry. My mother and I decided to register for both projects.

The Family Microbiome Project looks at the bacteria among family households - families with and without Lynch or FAP. Although this project is currently enlisting family households, they are interested in individuals for a future research project.

The University of Michigan Cancer Genetics Registry has enrolled approximately 6,000 individuals from 4,700 families. To enroll an individual simply needs to have a hereditary cancer syndrome or personal/family history that is possible for one. Enrollment includes consent, medical and family history questionnaire and potential for a blood or saliva donation for research purposes. One doesn't have to reside in Michigan to enroll. Those registered are also notified of events such as the Hereditary Colorectal Family Day. If you're interested in enrolling or learning more, contact Erika Koeppe by email or calling 734-998-1274.


If you're in the Michigan area and interested in a support group for Lynch or FAP there are two support groups to choose from:

• Gilda's Club of Greater Grand Rapids - Alice 616-885-6426
• FAP and Lynch Syndrome Peer Discussion Group - Kevin 734-476-7425

If you're interested in establishing your own support group, read Kevin's tips here: Finding or Establishing Support Groups

My mother and I had a great time attending the conference and would encourage you to attend any future conferences for networking and educational purposes.
It was incredible being in a room with so many others with the same condition at once!

When The Female Sex Complicates the GI

Have you ever noticed how the symptoms of GI issues are nearly always the same regardless of the actual diagnosis? They all seem to have in common diarrhea, constipation, nausea, cramping, pain, and bloating to some degree. And we can have more than one GI diagnosis thereby compounding the GI symptoms. Without medical testing, how would we ever know which GI diagnosis we have when all the symptoms are the same?

I was recently diagnosed with C Diff, a nasty gut bacteria that creates toxins. It's symptoms? Diarrhea, cramping, nausea, loss of appetite, dehydration, rapid heart rate, and fever. Without testing, my doctor and I would have never guessed I had C Diff as I have nearly all of these symptoms simply due to adhesions and short bowel syndrome. Fortunately though, the infection was discovered and I'm being treated with antibiotics.

My doctor's office called a few days after starting antibiotics and asked how I was feeling. I was able to eat better with reduced pain but continued to have severe bloating and nausea. The nurse was to relay the update and would call me back with any additional instructions from my doctor. However, since talking to the nurse my pain has increased yet again and with the start of my menstrual cycle, I noticed compounding symptoms.

The experience of menstruation is different for every woman. No cycle will be exactly the same nor will the symptoms be exact. Some experience early warning signs of the impending menstrual cycle while others have no symptoms. Some experience excruciating symptoms while others experience none.

There are physical and emotional or mental symptoms that can accompany menstruation. Physical symptoms that are considered normal include:

• Swollen or tender breasts

  

  quickmeme.com

• Constipation or diarrhea
• Bloating or gassiness
• Cramping
• Headache or backache
• Clumsiness 
• Lower tolerance for noise or light

It doesn't take long to realize that several of these premenstrual symptoms easily overlap with those of the GI realm. It's not uncommon for premenstrual symptoms to worsen a woman's existing GI symptoms. There's an interesting study from 2014 discussing GI symptoms before and during menstruation of healthy women. The results showed that even among healthy women, there is a higher incidence of diarrhea and abdominal pain and the presence of GI symptoms increases when a woman is experiencing emotional symptoms or fatigue. It would then be understandable that GI symptoms would further worsen for a woman already prone to GI problems. 

With the start of my menstrual cycle, I often lose my appetite and experience bloating and occasional cramping. These symptoms are identical to my regular GI issues only exacerbated. My already severe bloating is worsened to the point that I feel unable to eat even if I did have an appetite. I already periodically have backaches due to weak abdominal muscles that are unable to properly support my back after repeated surgeries. 

I anticipated my doctor's office to call me again on the same day my menstrual cycle decided to start. I pondered what I would tell the nurse. How could I be sure that my symptoms are from the infection, menstruation, or another issue altogether? I felt such great improvements after just four doses of my antibiotics only for symptoms to worsen once again after four days of treatment.

The remainder of the time on my antibiotics would be the same - excessive bloating, continued nausea, mild pain with eating, and an alternating mix of diarrhea and constipation (as constipated as someone with short bowel syndrome can be anyway). Fortunately, with antibiotics, the early fullness resolved and I've been able to eat regular sized meals again. The source of the remaining symptoms though continue to be uncertain - perhaps it's a combination or maybe it's not. Only time may tell as the course of the antibiotics and my menstruation ended simultaneously.

With the completion of the antibiotics, I'm scheduled for a follow up appointment in another three months. We shall see what happens with my symptoms over the course of the next three months. 

Seeking Answers

My health abruptly changed in 2015. Until that dreadful day in May 2015, my health had been stable since 2007, when I had an unexpected hospitalization due to my hemoglobin inexplicitly plummeting to 4. In 2015, I was suffering from loss of appetite as a side effect of my antidepressant medication resulting in a hospitalization for dehydration.

I continued to feel well physically until the night before my discharge from the hospital. That night I started experiencing an unceasing headache. The headache didn't improve with Tylenol and I finally gave in to trying Morphine - even though Morphine stopped managing my pain several years ago. However, it was in the middle of the night and I didn't want to bother my hospitalist with a medication order simply for a headache. So I consented to give the Morphine a chance to work. As I suspected, the Morphine had no effect on my pain and instead caused extreme nausea and constipation. It wasn't until I was given Phenergan that my nausea started to subside and I was finally able to obtain some sleep in spite of the pain. I didn't expect though to experience such an intense slow down of my bowel that I would feel as though I was starting to have an intestinal blockage from the Morphine.

And that's when my health changed for the worse once again - with that Morphine shot. Ever since I received the Morphine, I've been experiencing chronic nausea, early fullness, and increased abdominal pain particularly when eating. My GI doctor at the time ordered an upper scope and a barium x-ray to check for anything blocking my stomach or delaying gastric emptying. Both tests results were negative for any issue. My doctor chalked my nausea and pain up to adhesions from my previous surgeries. This was quite likely as I have had problems with adhesions previously causing nausea, vomiting, excessive diarrhea, and abdominal pain. It made sense and with multiple trial and error of medications, we found a regiment of medications that managed the symptoms to a tolerable level. I reached a point that I was able to accept my new health status.

My health started to change again though once again in 2017. I've started to have more intestinal blockages - two this year already - whereas I never had this issue previously. My last blockage was in mid August and it was as though someone once again flipped a switch on my health and it abruptly changed yet again. My blockage, fortunately, cleared on its own the next morning. However, with the clearing also came extreme early fullness and abdominal pain with eating. I was no longer able to eat an average size meal. Instead, I was being reduced to eating 8 ounces of soup and feeling as though I had over eaten. The nausea remained at the same level and actually improved due to reduced food intake. My early fullness and abdominal pain continued to worsen though as time went on since the blockage in August. I was further reduced from 8 ounces of soup to a few bites of food and was no longer able to drink liquid without severe abdominal pain and bloating.

With the news of my increased frequency of blockages and my worsening symptoms, my new GI doctor ordered a CT Scan with Contrast. The results showed:

1. Enlarged liver and pancreas
2. Renal Cysts
3. Hyperdense Stones in the Gallbladder
4. Mildly twisted Mesentry
5. Possible inflammation or infection of a fallopian tube
6. Adhesions with dilation of my small intestine indicating possible obstruction

With these results my new GI doctor believed my symptoms were stemming from adhesions, gallstones, and the fallopian tube. And so he ordered labs to check my values and referred me to my gynecologist. My gynecologist advised she thinks the issues with fallopian tube are simply adhesions and not an issue but will be ordering a pelvic ultrasound for better imaging of the fallopian tube for further diagnosing but wants to wait until my GI issues are improved to allow for improved viewing of the ultrasound. My lab results came back well.

My doctor decided to stop my Sulindac medication as side effects of Sulindac include nausea, pain, and diarrhea and to double my Prilosec to help heal any ulcers or irritation possibly caused by the Sulindac. I did notice some improvement to my ability to eat in the evenings. However, the mere sip of water with a morning Prilosec caused instantaneous pain and bloating followed by severe nausea within 20 minutes. Throughout the day my pain continued as well as difficulty eating due to the pain and early fullness. I started to have some days of constipation, which are rare for me on account of my Short Bowel Syndrome.

Next my GI doctor ordered stool samples to be tested and upper and lower scopes. My lab results came back as positive for C-Diff infection and my scopes showed enteritis, or inflammation of the small intestine, likely caused by the C-Diff. I also still have fundic gland polyps in the stomach and a new small polyp in my small intestine that was biopsied to test for cancer. I was started on a round of Vancomycin antibiotics for the C-Diff and my doctor advised I should start to feel better within 2-3 days of starting the antibiotics. And so I wait for both the pathology results and for the antibiotics to work.

As I'm awaiting resolution of my symptoms, I can't help but wonder if some of these issues were starting to appear in 2015 when my health suddenly took a turn for the worse and it was missed by my then GI doctor who dismissed my symptoms as adhesions and adhesions only. Was I developing gallstones back then and it was missed because testing was restricted to only inside my GI tract? I experienced concerns with the previous GI doctor in relation to my Iron and B12 levels as he felt I didn't need either supplement and after consenting to a three month trial without my medications, my levels worsened and I have since required regular iron infusions in addition to iron medication to maintain appropriate iron levels.

I'm trying to not dwell on the what ifs of what may have been discovered two years ago if my doctor at the time had taken the time for additional testing. Perhaps nothing else would have been found. Either way I am grateful for my current doctor for taking the initiative to continue to search for answers and resolutions to my symptoms. Although he anticipates my symptoms to significantly improve once the antibiotics are completed, he reassured me that if the symptoms aren't improved upon we will continue to search for answers to increase my comfort to beyond a just functioning level. My spirit and hopes are lifted with this reassurance as I give time for the antibiotics to work and hopefully work with great outcomes.

Fear of Food

Almost two months ago I experienced yet another intestinal blockage. Instead of this one being induced by medication, it was induced by food. This time I enjoyed steamed vegetables at lunch and stewed okra and tomatoes at dinner. I seemed to be doing well after lunch but as soon as I finished my dinner, an immense pain began to take over my abdomen. I didn't think too much about it for the first hour. Pain is normal for me and although I don't suffer from an immense level of pain everyday, it also isn't uncommon either to occur periodically. However, after an hour I still hadn't used the restroom. This is uncommon for me; I tend to have 2-3 bowel movements within the first hour of eating. My abdomen was becoming increasingly extended, tender, and firm. The pain wasn't lessening; rather it was worsening as the night went on.

I feared the worst but knew it was likely an intestinal blockage. However, unlike the previous partial obstruction this year, this presented as a full obstruction. I wasn't able to have any bowel movements of any amounts. As the night progressed, I tried my usual methods to relieve the pressure and get my intestine moving again. I took a double dose of milk of magnesia and I vomited all that I could.

Yet there was still no change. I began to quietly panic. I couldn't avoid the hospital very long if something didn't start moving. I decided to wait until the morning when I could call my GI doctor and request a direct admission to the hospital so that I could possibly bypass the ER. At 5 am that next morning, the blockage finally cleared and I was able to have the first of many bowel movements that day after not having any for over 10 hours. In fact, I spent the next 7 hours in the restroom. Needless to say, I was unable to go to work that day as I wasn't able to leave my restroom!

I have never had to worry about intestinal blockages prior to this year. I underwent testing to determine the cause of my sudden onset of chronic nausea and increased early fullness and pain after my last hospitalization in 2015. The results indicated that my adhesions were worsening and likely once again causing a stricture around my lower intestine. This was the cause of my worsening health with chronic vomiting and extreme diarrhea to the point of severe dehydration and malnutrition in high school. Thankfully, my adhesions have not caused such an extreme case as this at this point. I rarely vomit and my short bowel is nothing like that of those high school moments.

With medication and time, I've become accustomed to the early fullness, chronic nausea and pain. I'm able to manage it decently well most days. However, after this last intestinal blockage I've noticed another sudden change. My early fullness has become even more severe to the point that a mere cup of soup is filling and I easily become miserable if I eat more. My nausea has remained the same fortunately.

In addition to significantly smaller portions, I remain leery of vegetables unless they are mashed or pureed. I can't bring myself to eat vegetables otherwise. I've limited myself to soft foods that primarily consist of meats, some breads, soups, mashed vegetables, french fries, and noodles. Not much of a healthy diet by any means.

I have since ventured back into eating a small amount of lettuce every now and then but not on a regular basis anymore. Even when I do eat a small salad, I remain terrified that I'll be causing a blockage with my meal choice. Thus, I haven't allowed myself to resume my previous normal eating habits as other whole vegetables pose a greater risk than lettuce for an intestinal blockage. Interestingly, the fear of the risk of other whole vegetables is so great that I don't really miss eating these foods. I'm sure at some point I will venture further back into additional food choices, but at present I'm content with my overly cautious mindfulness toward my food. In the end, we need to be comfortable with whatever choices we make - physically and mentally.