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. 

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.

CBD Oil and Gastrointestinal Issues: A Review

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

Cannabis has been in the news quite a bit over the last few years particularly for its medicinal properties and this includes those of the compound CBD found within the plant. There are several well known benefits of cannabis but my interest lied in the benefits possible for nausea and pain as these are two issues I experience on a daily basis. Medical marijuana isn't yet legal where I live and I have no interest in the psychoactive properties of marijuana's THC compound. However, the CBD compound can be made into a oil from the hemp part of the cannabis plant allowing the medicinal properties to be accessed without psychoactive properties. Cannabis compounds, or cannabinoids, attach to receptors within the human body producing particular effects. The human body even produces certain cannabinoids itself. The receptor that CBD interacts with is CB2 and has specific effects on inflammation and pain. There are some side effects such as tiredness and sometimes change in bowel habits, appetite, and weight. For more information regarding CBD oil visit Medical News Today.

I consented to review BioCBD+ to discover any benefits for my nausea and abdominal pain. According to BioCBD+, CBD Oil can help with the following conditions so I was hopeful.


CBD: Past, Present and Future Premier Issue #1

BioCBD+ Total Body Care states it has 10 mg of BioCBD per capsule that is water soluble rather than oil based CBD. According to BioCBD+ , the water soluble formula is absorbed and more efficiently used by the body.

The suggested dosage of BioCBD Total Body Care is 1-2 capsules a day to support and maintain total wellness or up to 5 capsules per day for treating severe discomfort.

It didn't include instructions for when to take the capsule in regards to time of day or with meals. I started by taking one capsule per day in the late afternoon, typically following an early dinner.

The first time I took BioCBD Total Body Care I was experiencing severe abdominal pain and bloating that day. I did notice within half an hour a reduction in my pain; the pain didn't cease but it did decrease in severity. 

My chronic nausea was tolerable except for one day when I experienced a mysterious licorice odor for a full work day in spite of being unable to locate any source of such an odor. This licorice odor caused severe nausea that required me to utilize a medical mask and peppermints to cope with the nausea.

After 2-3 days of taking one capsule per day, I began to notice slight insomnia. I didn't experience an increase in energy level just an increased difficulty to sleep. I typically go to sleep between 9 pm and 10 pm. I was no longer feeling ready for sleep by 9 pm but instead it was becoming closer to 1 am before I could sleep. However, when I did sleep, I slept very hard and awoke rested. 

It was around the same time frame that I noticed two other effects. I developed an insatiable appetite and my Short Bowel Syndrome worsened. I increased from my usual 15 to 20 bowel movements a day to 30 or more per day. My skin was becoming perpetually sore and raw from the increased bowel movements.

After a week of taking the BioCBD Total Body Care the worsened Short Bowel had become unbearable. The frequency and urgency of restroom trips started interfering with my ability to function at work and limited my ability to participate in activities. I didn't want to leave me house. The benefits of reduction in abdominal pain and nausea wasn't outweighing the increased bowel movements and their effects on my skin and my daily functioning ability. I decided to discontinue the supplement to see if my symptoms improved. After 2-3 days without the supplement my symptoms did indeed improve but not before I had a Short Bowel flare that left me incapacitated for a full day.
My appetite returned to normal and 5 days after discontinuing the capsules I noticed another significant decrease in my appetite. Food no longer sounded appetizing, I no longer had food cravings.


With CBD Oil's ability to target inflammation, I thought perhaps this product would be better suited for my mother as my mother has arthritis and experiences inflammation more than I do. My mother shares my two rare diseases of Familial Polyposis and Short Bowel Syndrome so she has similar GI issues. However, in addition she has Diabetes, Arthritis, and an ileostomy whereas I have a straight pull through - not an ostomy. So perhaps, I thought, if she does experience a change in bowel movements, it wouldn't be quite the interference that I experienced. She obtained approval from her Nephrologist to start the BioCBD Total Body Care capsules.


My mother consulted her Nephrologist and with approval started taking one pill a day and tried taking the capsule at various times throughout the day. Unlike me, she did not notice any changes to her bowel movements. After trial and error of various times for taking the capsule, she found one capsule in the evening to be most helpful. My mother reported she tends to have more arthritic pain, particularly in her back and hips, in the evening after completing a day's worth of activities. My mother also has chronic leg cramps, primarily in the evenings. Both of these issues present a sleep disturbance for my mother resulting in frequent nights of poor sleep. However, with one capsule in the evening my mother noticed reduced pain and improved sleep on a regular basis. She did not increase the dosage from one capsule to two capsules when she didn't notice any improvements or to attempt to obtain further improvement. Overall, she was pleased with her experience and recommended the BioCBD Total Body Care capsules for inflammatory pain management.

Dialectical Behavioral Therapy for Chronic Pain

This is a guest post by Danielle Faith

In Pain at 4 am

I've just woken up. It is 4 o'clock in the morning and I am in extreme pain. I'm doubled over and unable to move. My goosebumps have goosebumps and I'm ready to pass out or vomit from the extreme pain. I know I have to go to the ER and it's causing a ton of stress.

I have asked myself countless times what if there was a way to avoid a panic attack? What if I could handle the stress better? What can help me? Could it help me avoid the Emergency Room? Can I make my situation more comfortable?

Does this sound familiar to you? Have you ever asked yourself these questions or wished you could manage stress better? What if I told you, you can make things better? It is moments like these where Dialectical Behavioral Therapy (DBT) can help lower your stress and anxiety, allowing you to make clear headed decisions about how to handle your health and can even reduce pain. This is because pain and stress can be intertwined. When you're stressed, you are in more pain and more pain equates to more stress. DBT helps break this cycle and gives you a chance at de-escalating the situation.

What is DBT?

Dialectical Behavioral Therapy (DBT) is a behavioral treatment method originally created by Marsha Linehan to treat a wide range of psychological disorders such as depression, borderline personality disorder, and suicidal idealizations. Over time, it has been proven that DBT is also effective in helping patients handle chronic illness as well and has been used to lower anxiety in chronic pain patients. DBT focuses on a set of four behavioral skills:

1. Distress Tolerance Skills
2. Interpersonal Effectiveness
3. Emotion Regulation
4. Mindfulness

Distress Tolerance

Distress Tolerance Skills are used when the situation cannot be changed. Each skill offers difference insight and it is important to use the right skill at the right time for maximum success. These skills are designed to help you cope and survive during crisis and can be applied to both short term or long term emotional and physical pain.

   Personal Example of Distress Tolerance

Radical acceptance is one of a few distress tolerance skills a person can learn. It is all about recognizing what you can and cannot control. For instance, at one point during the course of my illness I had to live with a feeding tube. Having that tube in my body was the strangest thing. I hated it. However, as time went on I began to accept it for what it was in the moment. That didn't mean I liked the situation.

I actually disliked it quite a bit. But having radical acceptance about it allowed me to relax and recognize that this is just how things are right now. It isn't forever. Figuring this skill out made me feel so much better about my illness. Plus, I was right, the tube wasn't forever, because I had it removed last year and have been much better since.

Interpersonal Effectiveness

Interpersonal Effectiveness skills apply to the skills that help us attend to our relationships. It is about balancing priorities and demands. It is about balancing the 'shoulds' and 'wants' to build a sense of mastery. These skills help identify what we need to do in order to get the results we want out of an interaction while maintaining a sense of self-respect.

  Personal Example of Interpersonal Effectiveness

Many times I've ended up in the ER and have had to use a specific format of talking to get the care I needed at the ER. The skill I'd use is known as "DEARMAN":

Describe: the situation, "Doctor, I've been vomiting all night and am in a lot of upper right abdominal pain."

Express: your concerns, "I'm very stressed out. I think I'm having a pancreatitis flare."

Assert: yourself by acknowledging what you need, "usually Benadryl, Zofran, lot of fluids and pain medication help the situation. I may also need an admit depending on my blood work."

Reward: the person and tell them what they get out of the situation, "I really need your help to make me feel better, that's what doctors do best!"

Mindful: of what is happening and/or repeating your needs, "So, when you put the medication orders in don't forget to include the Benadryl; that's important or I'll itch from the pain medication."

Appear: effective and nice, "I understand what you mean doctor. I am, however, in a lot of pain."

Negotiate: alternative solutions, "I'm willing to try an anti-inflammatory first. But if that doesn't work, can we make sure there's pain medication ordered as well? Thanks!"

Emotion Regulation

Emotion Regulation is the ability to respond to a variety of scenarios in a manner that is socially acceptable yet flexible enough to allow for genuine reactions. Being able to control how you react to a situation is essential when it comes to managing how you might be impacted by a situation.

  Personal Example of Emotion Regulation

One day I was feeling sad about my chronic illness. I was telling myself I looked fat and was lazy. I felt really bad about it too. I really just wanted to check out and take a nap. That's until I went ahead and changed my thoughts which influenced my feelings and behavior. Instead of telling myself something negative, I went for something more positive. Instead of saying I was fat and lazy, I told myself I was chronically ill and doing my best. That made me feel a bit better and I felt a lot of empathy for myself; then I was able to get up out of bed and start the day.

Mindfulness

Mindfulness applies to distress tolerance, emotion regulation, and interpersonal effectiveness skills through observation. By observing what is going on around you, this allows you to fully engage yourself in the experience without labeling it as good, bad, or anything in between. The benefit of mindfulness is that it quiets your mind and gives you a way to acknowledge all your thoughts and feelings.

  Personal Example of Mindfulness

I was really stressed out about being sick and having a feeding tube that I just broke down. I started to cry with no judgment. Before I knew it, all the stress I hold in my neck, shoulders, and back evaporated. It was like magic. Suddenly, as I noticed the lack of pain in my body, I stopped crying in awe. For two days I noticed every little thing about not carrying that weight on my back and ended up having a really great two days.

DBT for Chronic Pain

As you can see, DBT brings a lot of hope to chronic pain sufferers. This is because chronic pain and anxiety go hand in hand. Treating anxiety is one easy way to lower the intensity of a person's pain. While it may not fix the root cause of pain, it can allow a person the freedom to make intellectual decisions about their care that isn't influenced by anxiety or fear. This alone can unlock doors for those with painful conditions. 

Doubting Yourself

Interpersonal relationships have the capability to hold great power over and for ourselves. We tend to find value within the opinions of others rather than within ourselves. We, understandably, grieve the loss of relationships with others but we far too often lose ourselves amongst our relationships with others as well. It's easy to start to doubt ourselves when it comes to others.

When I decided to end my marriage, I chose to end a lifetime. A lifetime of hopes and dreams. I greatly grieved this loss and I greatly celebrated when I found myself amidst the pain. I survived emotionally and physically. And yet, even with my personal oath to never lose myself again...I still allowed myself to doubt. Doubt of myself, my future, and my worthiness of a blissful future.

With my divorce, not only did I part ways with my marriage but I also parted ways with my lifetime caregiver. I worry about my future with my chronic illness, about who would provide care to me as I age and become more ill. Even though I whole heartedly believe I deserve a loving life partner, I remain amazed when my chronic illness is accepted by a partner. It's that doubt creeping in at the corners of my life, always there ready to pounce upon my fears. I almost can't fathom that another individual would willingly take on my chronic illness and the caregiving it requires. Chronic illness demands much - much from ourselves and much from others. It is unforgiving and high maintenance. Why would another take on such responsibility willingly? We don't even want the responsibility of ourselves. It's as though I've destined myself to a life alone and when someone challenges that belief, I'm left in dismay at such a selfless act.

I recently found myself complacent to the point that I believed no one would ever be willing to accept this caregiving responsibility. I doubted myself without even realizing I was doing so. This realization startled me, especially when soon after I quickly discovered acceptance and care in another.

How could I have allowed myself to place such doubt upon myself? We are all worthy of care and acceptance whether it be from platonic, familial, or romantic relationships. There is always someone who will accept us as is and love us for who we are and that includes our chronic illnesses.

This awakening with the gentle reminder by another of my own self worth was necessary. I realized I couldn't permit myself to continue down such a self destructive path of doubt. I can't risk losing myself again. Losing myself was detrimental to my psyche - I was left with a broken spirit that required extensive self love to flourish again. The work we place into ourselves is excruciatingly difficult and never ending. But the reward is far greater than the work. We must never lose sight of this or we risk losing ourselves once again.

Each of us deserves far more out of life than we realize. It's time we come to the realization and put to the side the negativism, criticism, and doubt that we allow to seep into our hearts. Life is deeply more enjoyable and rich when we stop harming ourselves and instead let our souls flourish in love - love of others and of ourselves.

Traveling Abroad with Short Bowel

I prepared myself for a few days traveling from the United States to Mexico to attend a destination wedding. With Short Bowel Syndrome (SBS), I'm always nervous about traveling as I need to have an accessible restroom. Without a restroom, my activities are limited and I am at risk of an incontinent mishap. Unfortunately, SBS is a very unpredictable rare disease. My food and fluid intake, activity level, sleep, and medications all affect the intensity of my SBS. If I don't eat or drink, sleep well, and limit my activities I tend to have a better success rate with reducing SBS urgency and even flare ups. However, when I partake in the necessities of life - such as eating and drinking - my digestion process is short resulting in frequent, often urgent restroom trips. Activity furthers my digestive process also adding to the frequency.

Fortunately my travel was only from the middle of the US to Mexico resulting in two flights lasting approximately a total airtime of 3 hours. Not a bad flight time. Needless to say, I was not nearly as nervous as longer flights I've flown such as to Paris, France during my college years. However, anytime I travel outside of the US, I am also anxious about restroom access. The US has a fair amount of accessible and free restrooms for travelers to use. But this isn't always the case in other countries that is further complicated by requiring the local currency when restroom use requires payment.

And so I prepared for my flights. I was lucky that my departure flight was an early morning flight thereby aiding in my fasting efforts to reduce SBS symptoms. My return flight though would be late afternoon meaning I had to decide if I wanted to eat my day's meals prior to flying or fast for the entire day. I double checked that I had my Lomotil medication to slow my bowel and took my pills with plenty of time for the medication to take effect prior to my flight. I opted to forgo the included beverages and snacks on my flights in order to further reduce SBS symptoms and to utilize the restroom with every given opportunity to help prevent additional issues.




Now Amber Resort. Puerto Vallarta

I arrived at an all inclusive resort for the wedding. I was comforted by the fact that I had my own room to myself so I could have private restroom access whenever necessary and I quickly located the public restrooms. Fortunately at a resort there are plenty of restrooms so I wasn't too concerned. Outside of the resort though would be another story.





Cigar Shop and Restaurant

Soon after arriving at the resort the wedding group decided to embark on an excursion to explore the local town and complete some shopping. We took a taxi to a local cigar shop and restaurant. To my relief, it had a free restroom. To my dismay, the group had decided to also eat at the cigar shop. I was once again faced with the decision to eat or not to eat. Do I eat and drink thereby creating increased restroom need or do I continue my fast of food and beverage to limit my need and allow for increased activity? I chose to fast. We would be walking to local shops and a flea market and I was uncertain about the distance and restroom access outside of the safe haven of this cigar shop and restaurant. I chose correctly as there would be a restroom at the flea market but it would be a for fee restroom. I did have some pesos but not in the correct amount needed. I made the short walk to the flea market and we spent a quite amount of time shopping before heading back to the cigar shop to wait for a taxi back to the resort. To my favor though, with the cigar shop's restroom and my decision to fast I wouldn't require restroom access beyond the cigar shop.

The Wedding Group

I wouldn't leave the resort for the remainder of the trip which provided me some relief and freedom. I chose not to participate in any other local excursions although there was an abundance of interesting and exciting options. Such as a Rhythm of the Night boat trip to a nearby island complete with performances and dinner. But again, I had to question if the boat had a restroom and what about restroom access on the island? It was a several hour excursion. Or the 6 hour city tour that the group decided to embark upon. What was the restroom access like for the duration? I opted against such activities but I would still have to face the decision of swimming or not. Of course I wanted to swim but my body needs to cooperate in order to allow for swimming. I would also be faced with the decision if I should eat breakfast or not each morning. Breakfast starts my digestive process in motion and sets me up for possible activity limitation requirements. I chose to risk the activity limitation and ate breakfast each morning - a behavior I don't normally participate in during my regular day schedule. The next day would not go as well as the first day due to my body not cooperating as

needed. My Lomotil medication didn't even seem to phase my bowel. I was blessed with plenty of restroom access but I would have to forgo activities such as swimming this day. However, this was the wedding day and I opted to take a second dose of Lomotil that afternoon in preparation of the wedding reception.

Due to my abdominal adhesions from surgeries, I have chronic nausea and pain when I eat and the nausea has a tendency to strike even when food isn't involved. Such as every morning or when I'm jostled. The next day I would be stricken with severe morning nausea requiring a period of rest before engaging in further activities for the day. I wanted to swim at least once with my friends so I started my morning of nausea with a double dose of Lomotil. The double dose of Lomotil slowed my bowel and with rest my nausea eventually subsided so off to the pool I went. I even managed to eat lunch while at one of the resort pools and I found a pool restroom so that I wouldn't have to travel back to the resort towers when the need arose. I was thrilled with my activity achievement for the day. 

The following day was my last day at the resort and I would depart in the late afternoon. I knew I would likely need to eat at some point during the day but the timing was essential to protect against the SBS. I ate breakfast, realizing it was the safest option. I would fast the remainder of the day including passing up any beverage or snack offerings on the flights home. And once again utilized the restroom at every given opportunity. I made it through US Customs without issue and had enough time for one final restroom use before boarding the last flight home.

To my relief, I had managed my traveling and activities in spite of SBS and I didn't get sick from the local water! It just took some planning and making the better choices for a better outcome. I hope you enjoy travel time and activities in spite of any obstacles as well!