Sunday, October 1, 2017

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.

Sunday, September 10, 2017

CBD Oil and Gastrointestinal Issues: A Sponsored Post

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.
















Saturday, September 2, 2017

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. 



Monday, July 31, 2017

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.

Sunday, June 25, 2017

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!