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.