Grasping at Straws with New Medicine

I feel as though my health has started upon a roller coaster gradually building over the last two years to now. I've been on a search for managing worsened chronic abdominal pain and the addition of chronic nausea since 2015 after an unexpected hospitalization. Since then, my health has increasingly worsened this year through intestinal blockages and culminating in a C-Diff infection.

Based on my symptoms worsening to include extreme early fullness after my latest intestinal blockage in August of this year, I'm led to believe that I must have developed a C-Diff infection around the same time. Upon completing a round of antibiotics, my early fullness ceased. I continue to have chronic abdominal pain, severe bloating, and chronic nausea however.

With the urging of others amongst the chronic illness/bowel health groups, I spoke to my doctor about trying Creon. Creon is a medication that helps with digestion by replacing pancreatic enzymes to break down food. It is be taken with every meal or snack and varies in dosages available. My doctor agreed to let me try Creon with a dosage of 24,000 USP capsule to be taken one capsule three times a day. This dose contains 24,000 USP units of lipase, 76,000 USP units of protease, and 120,000 USP units of amylase. It is a delayed release capsule and it isn't absorbed in the GI tract but rather is excreted through stool. It is not to be crushed or chewed and online forums advised not to keep it in your mouth for long as it will burn your mouth. Due to my commercial prescription insurance, I was able to download a savings card and obtain the medication for $5 for a 30 day supply at my local retail pharmacy. Without this savings card, it would have cost me $50 for a 30 day supply.



Creon capsules

I took my first dose prior to eating my first bite of my evening meal. My usual abdominal pain and bloating occurred as it has been regularly occurring. I did start to feel better with reduced bloating and pain approximately three hours later. This would become the norm I discovered - Creon didn't ease my symptoms with the meal that it was taken with but rather hours later and into the next day. Although I'm not certain, I believe if I were to take this as prescribed three times a day, it would remain in my system and have a proactive effect for next meal.

I went to bed feeling hopeful about this new medication. I woke up about 1:30 am to use the restroom, as is normal for me. However, I experienced severe burning when I went to the restroom. Butt burn is common for those with ileostomy reversals as we tend to have frequent loose stools that are acidic. I have Short Bowel Syndrome (SBS) so I am accustomed to have 15+ bowel movements a day of typically watery stool. I use Calmoseptine ointment after every restroom use to combat the butt burn and for the most part, my skin isn't painful although it is highly sensitive. The butt burn I woke up to though was different from the run of the mill, occasional butt burn I get from a flare of my SBS. This was a butt burn so sudden and severe that I was reminded of the same type of sudden, severe butt burn that I experienced from prednisone when I was in high school. With each dose of prednisone taken, the butt burn worsened in timing and severity. The butt burn this night would last for several hours with unceasing pain that made it difficult to sleep and was severe no matter what I did - ointments and changing positions in bed were of no help. I was almost in tears the pain was so intense.

I decided to let my backside heal from this painful night before trying another dose of Creon. I realized I needed to at least try Creon a second time to see if the pain was reoccurring as my skin is sensitive and I do experience butt burn periodically due to the Short Bowel. My stomach though did feel incredibly better the next day after a dose of Creon the night before. I was able to eat lunch the next day with very minimal bloating or pain. My hope was strengthening that Creon was the answer but only if the butt burn wasn't a side effect. I waited a couple more days before trying Creon again prior to eating an evening meal. That night I did have mild butt burn but nothing like that first night. This was a tolerable pain that didn't interfere with my activity or sleep.

With this improvement, I started taking the Creon once per day in the evenings as I was leery of taking it at work in fear that the intense butt burn would return. I finally braved it and took one capsule at lunch and a second at evening and managed well with minimal pain for a couple of days. I had the intention to add the third capsule with something small to eat at breakfast time but never made it this far. The pain would start to increase as one day I took a capsule mid morning and a second at lunch time. I believe the capsules were taken too close together resulting in pain and so I skipped the evening dose. The following day I again took a capsule at lunch with the intention of taking a second at evening, however, the pain was too bothersome to follow through with a second dose that day. And so I decided to give my bum the weekend off from the Creon.

Around this time, I noticed that I seemed to be having more bloody stools. Again, this is not uncommon for me as I have intestinal ulcers that won't completely heal even with medication. The ulcers are unable to fully heal on account of my Short Bowel and are worsened if I become constipated as the stool has more time allowed to irritate the ulcers. Since the Creon is not absorbed in the GI tract and excreted through stool, it would make sense that it would also irritate my intestinal ulcers.

I decided to take a break from the Creon as I have come to the conclusion that Creon, although helpful, is not the right medication for me due to the increased frequency of bloody stools and butt burn. I might finish my prescription over a period of time, however it would not be as prescribed as my body is unable to tolerate three Creon capsules a day and at times not even one.

I searched online for remedies to help reduce the bloating as I believe my abdominal pain would be much more tolerable if the bloating was resolved. I already take Simethicone and Bentyl with every meal to reduce gas and intestinal spasms to reduce bloating and pain. Prior to the last intestinal blockage, these medications worked well to manage my pain. Now I've added Beano, Mylanta, and Essential Oils to my regiment as a new experiment to address the bloating.

Beano is an enzyme to help digest grains, vegetables, and legumes. Beano also produces another product Beano + Dairy Defense for those requiring enzymes to break down dairy as well as grains, vegetables, and legumes. I take two tablets prior to eating. When I'm home, if I feel like I need a bit more help I take a gulp of Mylanta before or after eating. When my stomach remains bothersome, I topically apply a few drops of Essential Oils. This combination in addition to my prescription medications seems to be managing my discomfort and symptoms well now thus far.

To further experiment and in an attempt to reduce financial burden, I decided to try replacing Beano with a food enzyme mixture called Digestabs by Puritan Pride. The cost difference is incredible. I was able to purchase 3 bottles of Digestabs with 60 tablets per bottle for $10. It follows the same rules as Beano - take two tablets prior to meals. Within an hour of taking my first dose of Digestabs, I started having butt burn even without using the restroom. I decided to further research Digestabs and found that these tablets include amylase and pancreatin. Pancreatin is composed of amylase, lipase, and protease - the three enzymes within Creon although at much smaller dosages. My body doesn't react well to one or a combination of these three enzymes. I discovered that Beano is composed of the enzyme alpha-galactosidase (a-GAL). I'm not sure the difference between these enzymes but my body definitely reacts differently to them.

I decided for my well-being I need to stick to Beano even if it does cost more.
Read next my review of the Essential Oils I've been using for further information and results.

Cleo Madison Clothing Review

Disclaimer: I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.



I was nine years old when I had my ileostomy placed before I would be able to have it reversed six years later. That first year was full of surgeries and hospitalizations resulting in changing my schooling from public to home based. I wouldn't return to public school until I was 11. On top of entering the tween years, I also changed school districts where I would have to start over making friends. I entered my new school as an extremely shy girl who had just survived five major surgeries and was struggling with body images of having an ostomy. My priority for clothing was comfort, not fashion. I would soon be bullied for my clothing choices as I preferred baggy jeans and oversized t-shirts for their comfort and looseness around my ostomy and still recovering abdomen from my previous surgeries. Due to the bullying I endured, I would change my focus to more stylish clothing but comfort remains a priority as well to this day.

My health has been changing over the last two years and since my last intestinal blockage three months ago, I've been experiencing chronic excessive bloating among other symptoms. This bloating is easily visible and affects my choice in clothing. Often I'll choose an article of clothing that isn't too tight fitting for the comfort in my abdomen size as well as clothing that I can layer to reduce visibility of my torso. At times the bloating is so severe that I will wear a belly support band to help ease the discomfort.

When I was asked to review clothing, I thought this would be a great opportunity to discover new clothing that works with my visibly bloated abdomen.

Cleo Madison specializes in modest yet stylish clothing for women. Clothing available includes dresses, skirts, tops, and swimwear with a range in sizes small to large with some extra smalls and larges and footwear ranging in sizes 6 to 10. First time buyers can enjoy a discount for signing up for a newsletter and US orders include free shipping.


Annie Floral Skirt

Cleo Madison was kind enough to send me the Annie Floral Skirt, which I decided to wear out for an evening celebrating the winter holidays with friends.

Upon receiving this skirt, the first thing I noticed was how incredibly soft the material is. The material was quite thin though requiring a slip to be worn underneath. The skirts and dresses are mid length and this skirt has a wide waistband that folds over. This folded waistband was helpful for added discretion to the abdominal area which I prefer due to my bloated abdomen but would also be beneficial for ostomates wishing to decrease any visibility of an ostomy appliance.

The skirt fit well around my waist without being too restrictive and was quite comfortable. Overall, I was very pleased with the skirt I received and would recommend it to anyone interested in the Cleo Madison styles.

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.