La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

The Unexpected After Surgery

When my CT scan showed gall stones in 2017, I expected I would require surgery to remove my gall bladder at some point. I didn't have a time frame in mind for this so I didn't quite expect it to be required by 2021 but within this time frame my many small gall stones changed into innumerable medium sized gall stones. My GI specialist theorized that my gall bladder was worsening my symptoms of chronic nausea and abdominal pain and it was time for removal. It was after receiving this news that I started to have increased pain, bloating, early fullness, and loss of appetite including difficulty eating solid foods - again contributed to my gall bladder. 

My doctors agreed that it was time to remove my gall bladder and my GI specialist and surgeon urged for sooner rather than later. My main concern was increased diarrhea without a gall bladder as I already have Short Bowel Syndrome and had 20+ stools a day. 

My GI specialist warned me of the risks if I decided to delay removing my gall bladder:

• Gall stones dislodging and blocking a duct and gall stone attacks which could require emergency surgery
• Inflammation and infection
• Gall bladder fusing to the liver which would further complicate surgery
• Gall bladder cancer

I also discussed bile salt supplements with my GI specialist as I had researched them as a possible treatment to improve digestion and reduce diarrhea after gall bladder removal. My GI specialist advised that I would likely not require bile salt supplements and to revisit this as a possible treatment if needed in the future. He stated that bile salt supplements allow the liver to become "lazy" by doing the liver's job for it of releasing bile salts and that the liver will likely function well on its own without assistance. My body was already functioning as though it didn't have a gall bladder so he, and my other doctors, suspected little changes to my bowel habits with the gall bladder being removed. This would also mean that I wouldn't likely start becoming deficient on Vitamins A, E, and K although my GI specialist approved if I chose to start taking these over the counter vitamins. I am already deficient of Vitamin D and presently prescribed Vitamin D3 by my nephrologist. 

Originally, I thought I would delay this surgery until January 2022 so that I would be able to use my Flexible Spending Account (FSA) for the cost. I had already used all of my FSA funds for the year and would be able to delegate the full amount to be contributed for the 2022 year if I waited. My symptoms continued to become more bothersome though so I thought I would schedule surgery for the end of September. Ultimately, I decided I didn't want to wait if possible and was able to schedule the surgery for two weeks after my surgical consult - August 26. 

Due to my medical PTSD and mistrust of medical providers, I was extremely nervous about electing a surgeon. My GI specialist provided me a list of possible surgeons to choose from. Between my familiarity with a couple of the surgeons due to working in the medical field and researching the possible surgeons, I made my selection and I feel that I made the correct choice. He has been extremely attentive to my concerns and my PTSD. 

My surgeon advised that he would attempt laparoscopic surgery to remove my gall bladder but due to the extent of my adhesions from my previous 7 surgeries, I would likely require an open surgery. He stated while gall bladder surgery is typically an outpatient surgery, he wanted to keep me overnight to monitor me even if he was able to complete the surgery laparoscopically - partly due to my medical complexity but also to monitor my pain control as I advised him that morphine is not an effective pain medication for me. In high school, my post surgical pain was controlled by Demerol, however, this is not a standard pain medication preference by doctors and we were uncertain how I would respond to other pain medications. If the surgery would be open, I would require a 3-5 day admission. 

We planned for an open surgery while hoping for the best outcome of it being laparoscopic. Due to increased Covid19 cases and hospitalizations, I was only allowed one person with me at the hospital so my boyfriend, Mike, went with me.

The surgery went better than expected and my surgeon was able to complete the surgery laparoscopically. He created 5 incisions across my abdomen - 2 on each side of my belly and one along my midline. He removed my gall bladder, a small mass on my liver, and another section of my liver for biopsy due to my liver becoming increasingly enlarged - resulting in 3 biopsies. While he provided me the option to stay over night following surgery, we ultimately decided for me to return home that day.

A few of my gall stones

The pathology results showed that my gall bladder had FAP polyps with dysplasia without malignancy - meaning my gall bladder was precancerous. I knew that FAP polyps could develop anywhere in the GI tract resulting in additional GI cancers outside of the colon but I didn't realize that included the gall bladder. The FAP polyps in my gall bladder hadn't been detected prior to removing the gall bladder so I was fortunate it was removed when it was as gall bladder cancer is difficult to treat. 

The mass on my liver was scarring and my liver biopsies were negative for any other issues. My surgeon recommended yearly imaging to monitor my liver due to the enlargement and scarring - which my GI specialist had already planned for follow up imaging in 6 months.

Following surgery, I suffered from lack of appetite and thirst resulting in dehydration. This further decreased my strength and energy levels and also caused my blood pressure to drop risking falls and fainting. I also experienced, numbness in my face, chest and under my ribs - particularly while using this restroom. This was concerning to my surgeon which prompted an office visit within a week of my surgery rather than two weeks afterwards. He ordered blood work that showed elevated liver enzymes and therefore ordered a CT scan. The CT scan results were unremarkable. He stated my elevated liver enzymes could be caused by surgery and ordered repeat blood work for the week after along with my 2 week post op office visit. I was able to discontinue my pain medication within 3 days post surgery and these symptoms have since subsided. However, I also periodically experienced such an intense heart beat that I could physically see and feel my stomach and chest moving with each pulse. It lasted for at least an hour each episode and it caused me to feel fatigued and the constant jarring is upsetting to my stomach. My doctors haven't been concerned about it and if it were an abdominal aorta aneurysm, it should have been detected on the CT scan. This intensely pulsating heart beat in my abdomen finally stopped occurring about 3 weeks after surgery.

Another concerning symptom following surgery for me has been a change in bowel habits. Prior to surgery, I had 20+ stools a day and while this number hasn't specifically changed post op - I was unable to feel as though I fully voided my intestine when using the restroom for about 3 weeks after surgery. I have also experienced significantly increased gassiness since surgery even with medication such as Gas-X. About half of my restroom trips are due to the gassiness rather than the actual need to use the restroom. My appetite remains suppressed which has allowed me to lose weight that I've been trying to lose for the past few years. I become full rather quickly and I haven't truly felt hungry since surgery. Rather, I eat something because the taste of a certain food will sound appealing not because I'm actually hungry. I have been eating one meal a day typically and on occasion I will have a snack. Surprisingly, I have been able to tolerate every food I've eaten post surgery including greasy foods. Various foods haven't increased my urgency to use the restroom or my abdominal pain. I am no longer having nausea and have been able to discontinue to medications to reduce chronic nausea and abdominal pain when eating. The chronic nausea and increased abdominal pains that I started having in 2015 were thought to be caused by my increased adhesions. However, I am left to wonder if these symptoms were not brought upon by gall stones entirely or at least partially. Additionally, my surgeon was required to remove adhesions in order to remove my gall bladder so the combination of removal of adhesions and gall bladder would have helped to address both of these issues. 

I returned to work 2.5 weeks after surgery as I felt comfortable enough to do so. However, after returning to work I started having new pains. My incisions hurt periodically and I have near constant pain under my ribs, on the sides of my torso, and up my back. The severity of this pain has varied and I've required resting in bed and Tylenol or Ibuprofen to help manage the pain. I've also required taking time off work each week in order to recover so that I may continue working the rest of the week. My surgeon is concerned by these new pains, especially as they have continued at a month after surgery. He and I both believe the new pains are a result of increased activity since returning to work and these pains were likely unavoidable. Since he ordered a CT scan one week after surgery that was unremarkable, he is waiting to repeat the CT scan or order additional testing. If my pain continues to worsen or doesn't improve by my next follow up appointment, he may decide to order more testing. 

I also met with my GI doctor for follow up post surgery and he explained that my liver was shown to return to normal size after my surgery. He further explained that my gall bladder was causing chronic inflammation and likely a chronic low grade infection resulting in my liver becoming enlarged. He agreed to complete a liver ultrasound in a year to continue monitoring my liver due to the scarring found on it during surgery. 

Understanding Dehydration

Dehydration occurs when more water is lost from the body than the amount of water that is taken in.

Dehydration is a common struggle for those of us who have required colon removal. Without the colon, water is not absorbed properly and typically results in liquid stools. Many of us without a colon are also diagnosed with Short Bowel Syndrome. SBS further worsens the absorption of nutrition and water due to damage to or significant removal of the small intestine resulting in frequent diarrhea. Some individuals with SBS require lifelong TPN in order to meet their nutrition needs.

I was diagnosed with Short Bowel Syndrome as a child after part of my small intestine died from surgical complications of my colon removal. My SBS causes me to have a minimum of 20 stools in a 24 hour period - more if I am having a flare up. During a SBS flare, it is common for me to use the restroom as frequently as every 2-5 minutes for several hours at a time.

It is common for those with an ileostomy or Short Bowel Syndrome to experience stools soon after ingesting liquid further complicating our ability to take in adequate amounts of water.

Later, when I was in high school, it was discovered that I had a hole in my small intestine. As a result, I was placed on an NPO diet and started on TPN for my nutritional/hydration needs. I became accustomed to not drinking fluids due to the NPO diet while my intestine's hole was healing. I began to only drink fluid when I felt thirsty, which wasn't often. As an adult, I started being followed by a nephrologist a few years ago due to the discovery of cysts on my kidneys. While this could mean that I have Polycystic Kidney Disease, my nephrologist thinks it may just be due to years of dehydration. This has prompted me to truly make an effort at achieving and maintaining a state of hydration. In spite of my efforts of at times drinking 100+ ounces of water a day, my nephrologist states I remain in a dehydrated state.

For those with colon cancer causing conditions such as Familial Adenomatous Polyposis or Lynch Syndrome may also experience dehydration worsened by cancer treatments. Chemotherapy and radiation treatments may cause side effects including diarrhea, vomiting, and excessive urination that may result in dehydration. 

My Nephrologist advised me that becoming hydrated requires several days - nearly a week - of continuous increased fluid intake for the body to fully become hydrated. One or two days of drinking well isn't going to be enough.

What are the signs of dehydration?

Common signs of dehydration include:

• Headache
• Dizziness or lightheadedness
• Fatigue
• Decreased urination
• Dark yellow/amber colored urine
• Decreased skin elasticity 
• Dry mouth and mucous membranes (such as lips, gums, nostrils)
• Muscle weakness

Severe signs of dehydration include:

• Low blood pressure
• Lack of perspiration
• Sunken eyes
• Increased heart rate
• Fever
• Delirium
• Unconsciousness

Risks of Dehydration

If dehydration is severe and not rectified, an individual may experience:

• Hypovolemic Shock - a reduction in blood volume that drops the blood pressure and amount of oxygen in the body. 
• Increased risk to heart and cardiovascular system - blood volume decreases cause the heart to work harder and faster which increases blood pressure and heart rate. Sodium is also increased in the blood from dehydration resulting in blood thickening that over works the heart. 
• Seizures due to electrolyte imbalance
• Kidney issues such as kidney stones, UTIs, or even kidney failure. Water helps to remove toxins in the blood via urination. Dehydration can result in the build up of toxins and acids in the body.
• Heat injury - ranging from mild cramps, heat exhaustion, heat stroke
• Coma, Organ failure, and death may result from untreated dehydration

Diagnosing Dehydration

Several physical factors may be examined in addition to laboratory tests to identify common electrolyte changes associated with dehydration may be utilized for diagnosis. This may include:

• Mental status exam
• Vital signs
• Temperature
• Skin and mouth examination
• Blood tests and urinalysis
• Infants may also be examined for a sunken, soft spot on the skull, sucking mechanism, and loss of sweat and muscle tone

Treating and Preventing Dehydration

The U.S. National Academies of Science, Engineering and Medicine recommend men to drink 15.5 cups and women to drink 11.5 cups of water a day. It's recommended to limit or avoid caffeinated drinks.

An individual may need to adjust their daily water intake due to exercising, environment, overall health, and if they are pregnant or breastfeeding. 

IV fluids may be required for severe or recurring dehydration. This is common for those with malabsorption issues. 

There are several hydration products available to help prevent dehydration. Simply search for hydration drinks. Compare the amount of electrolytes and sugar in a drink when shopping. Some hydration products include:

• Body Armor
  
• DripDrop
  
• H2ORS
  
• Liquid I.V.
  

Recovery, Not Rest

I came across an article about how resilience is not about pushing through or just taking a break to rest but rather about recovery. Since then, this difference between recovery and rest has been on my mind as I try to engage in recovery for myself rather than just resting. But what is the difference and why is it important?

I discovered for myself how recovery plays a vital role in our well-being this weekend. I already knew that I require a lot of sleep and when my sleep is limited, I am at greater risk of a Short Bowel Syndrome flare. These flares can last anywhere from half a day to couple of days and medicine such as Lomotil to slow the bowel isn't really all that effective during a flare. In fact, nothing but time seems to help me when I'm having a flare. Sure, sitting up instead of lying down makes a difference but food, drink, and medicine don't play a positive role but rather can make the symptoms worse.

This weekend I spent both evenings awake and active until about 2-3 am. I slept in the best that I could the following day but most days I'm not able to sleep in later than 9 am at the latest. And if I take a nap during the day then I run the risk of not sleeping well that night. And so I overdid it both days and I felt it by Sunday afternoon. My body started to revolt. I wasn't flaring at this point but I was exhausted and in general just felt under the weather. I didn't do anything Sunday but my body paid no heed to my inactivity. The damage had been done and I needed a recovery period. I took a nap in the afternoon and felt some better by the evening. I fell asleep at a decent time that night and slept well throughout the night. However, it still wasn't enough. I awoke to feeling crummy and I felt so horrible I ended up only working half a day. I made it home and crashed until the late afternoon. This time when I awoke, I felt more like myself. I took a Lomotil and was able to enjoy an evening with my mother attending an art performance. This however, meant that I would have a bit of a later night than usual for a work night and I felt it the next day. Whenever I take Lomotil and it's effective, the next day is a bit of a swing day in the effects. Meaning that Lomotil may slow my bowel that day but the next day my intestine is trying to return to its daily normal and so will worsen my Short Bowel Syndrome as it's re-establishing itself. Between increased restroom needs, fatigue, and an overall crummy feeling I was struggling a bit for my usual normal. I was closer to normal than I was the day before but I could tell I still wasn't 100% myself. If I took another Lomotil to help my symptoms then I would just prolong the swing effect another day so I didn't want to take anymore medicine.

So how could I have helped myself besides the obvious of not staying up late, especially two nights in a row? I needed to not only catch up on my sleep but also to allow my brain a break from thinking and stressing. I should have put my phone down, ignored social media and focused on relaxing myself. As it explained in the resilience article, we may think we are recovering when we take a moment to rest but our brain is often remaining active with stressful or agitating thoughts. This activity isn't allowing a recovery period as we spend more energy wrestling with distressing moments.

So next time we are needing to recharge, let us remember to allow for recovery not just rest. Let's put down our technology, focus on our breathing and clear our thoughts. Engage in a light hearted moment with friends, journal, listen to our favorite music or podcasts, take a moment to enjoy nature, meditate or sleep. We all deserve a break from the mental and physical exhaustion of life and particularly that of chronic illness.

Fohm Cleanser: A Sponsored Review

Disclaimer: I have been given Fohm 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.

I have Short Bowel Syndrome which means I use the restroom 20+ times a day for loose bowel movements as a result of having my colon and part of my small intestine removed. My skin is sensitive due to the frequent restroom use and regular toilet paper can be harsh on such sensitive skin. To help combat skin irritation, I utilize Calmoseptine ointment after each restroom use. Not only is my rear sensitive but so is my vaginal skin that has only worsened over the years. For individuals like me, a wet cleanser can be helpful in mitigating the effects of frequent restroom use associated with GI issues. Typically, individuals think of wet cleansing wipes but a wet cleansing solution, such as Fohm can be a game changer.

Fohm cleanser is a touch-less dispenser system to replace wet wipes to not only help clean your rear but also prevent build up in your sewer system of excessive wet wipes that will also help reduce pollution and sewer line issues.

I was provided the touch-less dispenser and a bottle of Fohm cleanser solution that is marked to last 6 weeks. The cleansing solution is liquid and when activated through the dispenser turns to a foam. One can purchase Fohm on a subscription service basis or a single cleanser refill. The dispenser comes with a USB charger to charge the dispenser batteries to allow for touch-less dispensing of the cleanser on your existing toilet paper. However, it does not come with the USB cube so I had to obtain my own cube for charging the dispenser.

Upon first glance, the system didn't come with very detailed instructions although was simple enough to assemble. For those who suffer with pain or arthritis in their hands, this system may be difficult to assemble without some assistance from someone else. The cleanser bottle is made with a durable plastic that is not the easiest to squeeze for emptying the cleansing solution into the dispenser and the top of the dispenser was not particularly easy to screw on tightly to prevent spills. I would suggest charging the dispenser before adding the cleanser to the dispenser.

I placed the dispenser on the back of the toilet tank for easy access for cleansing my skin after using dry toilet paper. The downside of the dispensing system is that it is not portable for continued use outside of the home unlike hand sprays that may easily be concealed for use no matter where you are. For someone with regular bowel movements (i.e. with a colon who isn't having diarrhea), it may be suggested to only use toilet paper with the cleansing solution to clean the skin. However, due to my Short Bowel Syndrome, I found it cleaner and easier to clean with dry toilet paper first followed by the cleansing solution. The system dispenses a fair amount of foam solution when activated and can be changed to dispense 10 ml or 25 ml. I always fear using new cleansing products as ingredients may cause a burning sensation to already sensitive and irritated skin. This was not the case with Fohm cleanser though. It was comfortable on my rear and vaginal sensitive skin areas even at my rawest skin moments. 

With continued use I have noticed less irritation to my vaginal skin in particular. I have not felt able to stop using the Calmoseptine ointment on my rear though even with continued use of Fohm. Others may be able to forgo such ointment use though. Overall, I was pleased with the Fohm product and would recommend it to others with GI issues or who just want a more eco-friendly cleansing option.

A Love Hate Relationship with Medicine

I have a very tumultuous relationship with the medication Lomotil, generic is Lonox. This relationship changes periodically throughout the years. I take Lomotil to slow my bowel movements due to my Short Bowel Syndrome. The amount of Lomotil I require has also changed throughout the years in relation to how my body is affected by the medication.

During the 6 years that I had an ileostomy, I never took Lomotil. However, when I was able to have my ostomy reversed in high school, I required Lomotil to slow my bowels and help with my control. I started off requiring 4 pills a day and I would take these all at once in the morning and they would last throughout the day. I don't remember noticing any negative side effects such as increased pain or cramping. As that first year progressed so did my adhesions causing a stricture. I endured daily vomiting and excessive diarrhea that required surgery to remove the adhesions causing the stricture. For a period, I not only required Lomotil at maximum dose but also Sandostatin shots. But none of it worked to slow my bowels. I had a negative side effect to the Sandostatin after a while - it caused my elbow to lock. And I was forced to rely on the Lomotil by itself. Gradually throughout a year as I prepared for starting college, my body adapted once again and the Lomotil became sufficient in its job. Due to manufacturing changes, I had to change from the generic form to the brand name for continued efficiency. I managed throughout college taking the maximum dosage and remaining active, completing all the activities I wanted with minimal difficulty.

With my first full time job came new insurance that didn't cover the brand name and I was forced to change to the generic form of Lomotil. Manufacturing must have changed or my body changed once again as the generic form was now sufficient. And then I was suddenly able to decrease the amount I took until I was able to stop it all together for the most part. When I was having a particularly busy day I would take some, varying on the amount based on my activity for the day. As the year progressed with this job so did my stress level. The intense stress of my job wreaked havoc on my body and Lomotil was no longer sufficient even at maximum dosing - my Short Bowel Syndrome was out of control and I had to quit my job. I took time to heal and lessons from this job experience to better cope with future job stress without the bodily toll. Over time, I was able to stop the Lomotil once again and only take it as needed for particularly busy days.

Now, almost 10 years later and I have new problems - increased adhesions. My adhesions cause chronic pain and nausea and I hate taking Lomotil as it increases my pain while slowing my bowels. And if I take too much Lomotil for too long of a period, I risk intestinal blockage. So now I only take Lomotil when I'm having a Short Bowel flare or when I'm going to be particularly busy, such as for an outing or on vacation. I judge the day's activities and bathroom access for determining my dosage for the day. When I'm on vacation, such as on a cruise, I will take maximum dosage as I am very busy during these vacation. If I'm going on an outing, I may just take one or two pills.

The side effects of my Lomotil with my adhesions often causes me to dread outings and activity although I enjoy the activity itself. It's a hard balance to obtain between the bloating and pain that's increased by taking Lomotil with making sure to find a bathroom with any activity. My body seems to undergo periodic changes and so I await to see how it will fare over the next few years and what changes are on the horizon.

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.

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!

Intestinal Blockages

It could have started due to various causes. There are too many variables affecting my daily physical well-being. I can rarely pinpoint one cause for anything. It's most likely a combination of actions or it may just be random luck. It's not always easy to pinpoint the root cause of a flare up or an intestinal blockage.

Due to a combination of iron tablets and regular iron infusions, I'm finding myself with increased energy on the weekends. This was a prime weekend for activity. I had energy for a weekend full of activities. Perhaps I pushed myself too hard two days in a row.

Saturday I wanted to attend a local festival so in preparation for walking and possibly limited restroom access, I took one Lomotil tablet in the morning to slow my Short Bowel Syndrome. Normally, I have about 20 bowel movements a day thanks to my Short Bowel. This can be problematic when faced with physical activity and limited restroom access.

I hate taking any anti-diarrhea medications. The crazy thing is, I used to take the max doses allowed of Lomotil in an effort to slow my bowel for daily functioning. Now, one Lomotil tablet leaves me in pain and disrupts my normal bowel function which has its own negative side effects. However, I am able to participate in activities with less worry about restroom access. The slow down action of Lomotil has become so severe for myself that I can accidentally induce an intestinal blockage simply by taking one Lomotil tablet two days in a row.

Saturday evening started off with my Short Bowel Syndrome emptying itself as much as possible once the Lomotil started to wear off. My bowel was making up for only requiring very few restroom trips during the day. Additionally, the slowed bowel agitated my intestinal ulcers resulting in extreme blood loss for about 6 hours. I felt alright though. I had made it through the life span of the Lomotil and my bowel was returning to its normal routine.

I woke up Sunday fairly normal except my bowel was a bit angry still at me leading me to not feel comfortable leaving the house unless required. Fortunately, I was able to stay home until my bowel calmed down. The morning transitioned into a pretty bowel typical day for me. In the evening, I decided to snack on pickling cucumbers. As I finished my second small cucumber and reached for the third one, I remembered the time I gave myself an intestinal blockage by eating crab salad made with a whole English cucumber. A whole English cucumber is too much for my intestine to handle. Before this occurrence, I never had an intestinal blockage caused by food. Not once. So I rationalized that pickling cucumbers are smaller and I've eaten two in combination with tomatoes, onions, and olive oil without any issue. So one more wouldn't hurt anything.

Monday started with uncomfortable bloating and limited bowel movements (for me...remember I'm used to 20 times a day) but a lot of my mornings start this way and improve as the day goes on. So I ignored it; just another day. I drank some coffee and ate a snack and lunch and my symptoms seemed to start to improve. But then my day drastically changed. Suddenly I found myself having a flare up. I was running to the restroom every 5 minutes - literally - and started having painful abdominal cramping. This went on for hours, I was excited when I was able to wait 20 minutes in between restroom trips. I took the 20 minute interval for granted and it returned to the 5 minute intervals. If I can just sleep, this will clear up by the morning I think to myself as I draw on past flare ups.

I managed to finally sleep for a few hours and I awoke to a severely distended
abdomen and
excruciating cramps. Now my bowel movements had gone from 5 minute intervals to barely any. Somehow, I went from flare symptoms to blockage symptoms over night. I tried drinking hot tea, eating soup, using a heating pad, lying down rather than sitting up. Nothing was making a difference. With hope, I took the max dose of milk of magnesium laxative to help out. Normally, if I take a laxative I have flare symptoms but it does help flush out my intestine and stop the abdominal cramps and bloating. The laxative did nothing this time. I knew I was getting into trouble but I still refused to accept that I was having an intestinal blockage and I refused my parents' suggestions of going to the ER. In desperation, I stopped trying to keep my food and drink down. I allowed myself to vomit until I couldn't vomit anymore. The pain and bloating improved but was still present. My mother convinced me to take a Lortab for the pain so that I could sleep. As the night progressed, the symptoms began to lessen. I started to have more typical for me bowel movements. I clung to the hope that this blockage was finally clearing or I would be forced to visit the hospital the next day.

Fortunately, the combination of vomiting and a Lortab did the trick this time and the blockage progressively cleared itself over the course of the third day. I was lucky this time.

I replayed my actions taken over the weekend. Was this caused by a combination of factors? Did I start into action a blockage when I took the Lomotil and then cemented it into place by eating too many cucumbers? Was I having a flare at all or was it just the early signs of a blockage?

With Short Bowel, there isn't always a definite cause for how my bowel will act on any particular day. But I need to be mindful of the choices I make to help protect my physical well-being. I need to pay heed to my body's triggers. I've learned that I need to be careful about how many Lomotil tablets I take and my body is starting to require more attention to food limits. With chronic illness, we are faced with periods of change requiring us to adapt to yet, another change in our health and how our bodies respond to daily life.

Using a Bidet for GI Disorders: 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.

As a GI patient with Short Bowel Syndrome (SBS) my doctor recommended using a bidet to improve personal hygiene and reduce skin irritation. SBS is a rare disease resulting from removal or loss of function of the small and/or large intestine. Among the complications that arise from loss of intestine it is common to have frequent severe bouts of diarrhea even numbering 20+ bowel movements a day for some individuals. This often causes moderate to severe skin irritation, pain, and even bleeding.

Due to the effects of SBS, I was encouraged and nervously excited to try out a bidet.

Bidets are known as an environmental friendly option to toilet paper. Toilet paper can be harsh on the skin and leave unwanted residue. A bidet reduces waste while improving skin care through thorough cleansing. 

I received a Luxe Bidet Neo 185 which attaches easily to any toilet. The Neo 185 has a dual nozzle feature with two settings for posterior and feminine cleaning. The nozzles are protected by a nozzle guard gate and are retractable with a self cleaning option. With a turning control knob, the Neo 185 allows the user to easily control the amount of water pressure preferred for comfortable use and optimal cleansing.

Luxe Bidet Neo 185 Kit

The Neo 185 comes with the equipment necessary for installation and use in a convenient small package. The installation instructions were to easy to follow and installed within minutes. I had never used a bidet previously and was nervous about my first experience with a bidet and appreciated the included brief guide for first time users.

My main goals with the Neo 185 were to reduce skin irritation and reduce or eliminate use of protectant ointment for skin irritation. I required using skin ointment quickly after my Ileoanal Anastamosis in 2001 and hadn't been able to forgo using ointment since. I began using the Neo 185 with each restroom use and discontinued using skin ointment. After one full day I noticed my skin irritation reducing and increased comfortability without my skin ointment.  Feeling comfortable to no longer use ointment on a regular basis was a personal breakthrough.

Luxe Bidet Neo 185 Installed

Flare up episodes of excessive bowel movements with SBS are common causing the skin to become severely irritated and painful from frequent bowel movements and the harshness of toilet paper on already sensitive skin. I still required skin ointment during a flare up. However, using the Neo 185 during a flare up was extremely helpful as the water simultaneously soothed and cleansed the skin allowing for reduced use of harsh toilet paper. The feminine cleaning setting is an added benefit particularly during menses to enhance sanitation and a sense of freshness and cleanliness.

The Neo 185 is a non-electric cold water bidet. I would personally prefer a warm water and a warm air dry option, however, I was pleasantly surprised that the cold water isn't uncomfortable. With the water pressure knob, the water pressure can be adjusted from a light to strong stream as slowly or quickly as preferred without rough pressure. This adjustability helps to increase comfort level particularly when adapting to using a bidet.

I highly recommend the Luxe Bidet Neo 185 especially for use by those with GI disorders to reduce skin irritation and improve hygiene. The Neo 185 can easily be purchased through Amazon at a reasonable price and is well worth the investment for a hassle free bidet.

Health Maturity: Reaching New Milestones

Living and coping with a chronic illness from a young age pushed me into a level of maturity my peers wouldn't reach for decades. The responsibility of taking care of my own health, appointments, medications, diet, and more aren't typically tasked by most individuals until they reach at least young adulthood and if in good health, even years afterward. In my young years I learned a multitude of lessons providing invaluable skills and values to last me a lifetime. I learned perseverance, ambition, how to thrive and survive, hard work, responsibility, compassion, empathy, health intelligence, my body, fear, distrust, hopelessness, and anxiety. It is these last lessons that became so ingrained within my psyche that I was left with Post Traumatic Stress Disorder and emotionally crippled, fixated in an inability to mature and grow to complete independence and trustfulness. During health crises, I would regress to a child like state and mentality filled with terror.

Due to this fixation, I remained with the same doctor, a pediatrician for 20 years. My parents are always available to help support me through my health issues and in the past I required 24 hour care while in the hospital. I feared being alone and I feared doing too much myself while hospitalized due to pain and risk of increased pain. For example, I usually require multiple tries for an IV and once successful  I refused to move my IV arm as I learned that increased movement causes the IV to require replacement faster and I typically required a new IV at least once per hospitalization. I was rarely left alone due to the combination of lethargy, pain, fear, and difficulty completing tasks.

After 8 years of stabilized health and no hospitalizations, my streak ended. I was unexpectedly faced with multiple challenges I've been dreading for years in addition to hospitalization. I am in the process of obtaining an adult GI doctor and my doctor has been out of the office due to her medical assistant's death. As a result, I didn't really have a doctor assigned to follow me and provide orders when I suddenly required an adult GI doctor.
Due to ongoing depression, I restarted taking Zoloft medication and began experiencing lack of appetite. I was surviving on primarily cheese and crackers for 1.5 weeks. During this time I became dehydrated and Wednesday morning my blood pressure bottomed out to 88/58 resulting in near fainting. I fell backwards and hit my head at work. My coworkers forced me to the ER. My stubborn self wouldn't have gone to the hospital had I fallen anywhere other than work and  my coworkers knew it. I happened to be having a GI bleed this day as well - a normal monthly event for me. I was to be released from the ER after receiving fluids and I was scheduled an appointment with my to be  new GI adult doctor for the next day to be followed by a scope. As I was leaving the ER my blood pressure bottomed out again and this time I would remain in the hospital for four days. The hospitalization would lead me to new milestone achievements in my level of maturity. I was given a new IV without any tears this time. After I settled into my room, I sent my mother home and I spent the majority of the days and throughout the nights on my own. I provided my own care, even taking a shower. I received upper and lower scopes - my first ever scope with my pediatric GI doctor to be present. I require general anesthesia for scopes as I wake up otherwise and I have a preferred anesthesiologist who my pediatric GI doctor always tries to schedule with due to my level of comfort and trust with this particular anesthesiologist. These scopes would be performed with another anesthesiologist and a partner of my new adult GI doctor. I was anxious regarding the anesthesiologist and although I previously visited with the GI doctor and felt comfortable with him, I was overcome with anxiety and tears in the procedure room. The anesthesiologist and nurses provided reassurance and I quickly drifted off and awoke in the recovery room. I was informed that I have a few stomach polyps and four ulcers in my ileum and biopsies would be performed to test for cancer and Crohn's Disease. The GI doctor explained that ulcers in the small intestine are common in Crohn's and would like to cover all bases in my care. At my last scope in 2007 I had polyps in my stomach and small intestine. It was at that time my pediatric GI doctor gave the prognosis of developing stomach cancer by age 30. I'll turn 30 in just over one month. I anxiously await the result of my biopsies.
That night I ate my first solid food since prior to the hospitalization and that night I suffered the consequences of severe diarrhea and pain. I was given morphine for the pain and experienced negative side effects including intense nausea and intoxicated symptoms. After receiving Zofran, I required Phenergan to stop the nausea. The following day another partner of my new adult GI doctor visited with me and released me once I felt ready, stating he understood that I know my body and what I need better than any of the doctors.

I was discharged and I'm still coping with the inability to eat very much food due to severe pain. This is similar to how food affected me after my surgeries in high school. It took years for my body to adjust to food and only experience intolerable pain after large or rich meals. I'm extremely frustrated with this return to debilitating pain with any amounts or types of food but am taking it a moment at a time to readjust and resume my normal eating habits.

I made it home with my health, sanity, and a lot of milestones to be proud of. I survived a hospitalization without constant care, stayed the nights by myself, without my pediatric GI doctor overlooking my care, my first scope in 8 years, and changed doctors. I truly dreaded all that was to come about during this trial but I survived and am filled with a sense of hopefulness, relief, and pride. I can't believe I made it through especially with minimal difficulty and only brief PTSD symptoms.  I've been frightfully dreading these milestones for decades and all in one week I finally surpassed each one. Reaching a new level of health maturity has provided me confidence in my ability to face future hospitalizations, procedures, and changes.

Celebrate your milestones for each takes thousands of small steps 

to reach that moment in your life.