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.
  

Continent Ileostomies

If you're like me, you haven't heard a lot about different ostomy options for colon removal. Individuals frequently hear about the typical ostomy option - the ileostomy (even though many incorrectly refer to ileostomies as colostomies thinking colostomy is the general term for an ostomy). The conventional ileostomy has an external stoma with a wafer and pouch system and involuntarily releases gas and feces into the pouching system worn over the stoma. However, there is another kind of ileostomy called a continent ileostomy that is created internally allowing for gas and feces to be eliminated by inserting a catheter through a stoma into an internal pouch or reservoir that collects gas and feces.

The continent ileostomy is created from the end of the small intestine and another segment of intestine that is telescoped into itself that creates a nipple valve. The stoma created for a continent ileostomy is flush with the skin whereas a conventional ileostomy stoma protrudes from the skin. A small covering is recommended to be worn over the continent ileostomy stoma to absorb mucus from the intestine. The nipple valve is self sealing to prevent gas or feces from exiting the stoma involuntarily. 

The first continent ileostomy was devised by Dr. Koch known as a Koch Pouch, sometimes spelled Kock or referred to as a K-Pouch. The technique was later revised by Dr. Barnett and is known as a BCIR - Barnett Continent Intestinal Reservoir.

The Koch Pouch has an increased risk of a fistula developing due to a triangulated suture line. A fistula can occur due to breakdown in the internal pouch wall that allows waste to leak out that occurs until an abscess on the surface of the skin appears. The BCIR reduces the risk of a fistula developing due to a lateral internal pouch design that has a single longitudinal suture line.

The BCIR changes the direction of the nipple valve in comparison to how it is with a Koch Pouch. This change in direction allows for the muscle contractions to direct waste and mucus toward the internal pouch rather than the stoma. An intestinal collar is also created by the BCIR that tightens as the pouch fills with waste. This collar tightening helps to prevent the nipple valve from slipping.

According to WebMD, following the creation of the continent ileostomy, an indwelling catheter will stay inserted into the internal pouch to allow for continuous draining for 3-4 weeks. The catheter will need to be irrigated several times a day as well with an ounce of water. Once the internal pouch heals and matures, the pouch will need to be drained several times per day. Without draining, the pouch will fill and risk tearing or the nipple valve slipping or leaking. 

Draining the internal pouch can be accomplished by relaxing the abdominal muscles before lubricating the catheter and inserting it through the stoma to the preset mark on the catheter. Once continuous drainage use has been discontinued, it is recommended to drain the internal pouch every 2 hours during the day, upon awakening in the morning and before going to bed. It is recommended not to eat or drink within 2 hours of bedtime and the catheter can be set to constant drainage during the night. Over time, the time in between internal pouch drains can be lengthened resulting in the ability to drain the pouch 4 to 6 times a day and irrigated twice a day. It is also recommended to drain the internal pouch anytime feeling full or bloated and before exercising or going to bed. 

A conventional ileostomy and a continent ileostomy both are life saving and allow an individual to continue living with minor adjustments to activities. An ostomy of any kind does not have to limit an individual's lifestyle and can allow for increased quality of life. If you are facing surgery to remove your colon for any reason, a continent ileostomy may be another option for you to discuss with your doctor. 

Accepting Body Changes

It's common for those of us with chronic illness to struggle with our weight - whether it be to gain weight or to lose weight. Exercise is often difficult to maintain when we don't feel well and everyday is unpredictable. Eating healthy may not be as easily accessible to others be it due to financial burdens we face on account of our medical expenses, limited income related to ability to work, or because of health reasons such as diet restrictions from what our bodies will tolerate or what tastes good in the moment. Our bodies often don't absorb nutrients properly and medications have side effects affecting weight. Mental health can influence weight - we may be hungry or not at all, we comfort ourselves with unhealthy food options, and we may lack the motivation or energy level to engage in physical exercise.

The last 4 years has been a roller coaster of body weight changes for myself. For the majority of my life I was considered under weight regardless of what I ate. However, the body changes with illness and with age. In Graduate School, I gained a significant amount of weight due to unhealthy eating and depression and I worked very hard over the course of 2 years to lose the extra weight. I exercised and ate healthy and I was able to maintain my weight again through healthy eating choices until my divorce 4 years ago.

My weight yo-yoed over the last 4 years since my divorce, which wasn't healthy or helpful for my metabolism. I lost weight at times due to healthy eating and other times due to illness. Last year, I gained weight to my heaviest again. I started this year exercising regularly and eating healthier in an effort to improve my health and shed some of the extra weight. I realized I didn't need to lose all the weight but instead wanted a happy medium between being under weight and my present weight. I failed to realize though that the changes the body undergoes with age has caught up to me. My metabolism is not anywhere near to what it was in my 20s when I first started focusing on eating healthy and exercising. Now, the combination of eating healthy and exercise only changes the scale by less than 10 pounds. To make matters worse, after losing that 10 pounds, I ended up gaining 20 soon after - that was an additional 10 pounds that I hadn't been at before.

These changes in my physical appearance have been difficult to accept at times. I longed for how my body used to look. I shied away from full body pictures of myself. I was so used to what I previously looked like that I hadn't accepted the changes in my appearance. I kept thinking, "I'll lose the weight". Negative thoughts about myself would race through my mind whenever I looked at pictures of myself or saw myself in the mirror.

Now, I realize that my weight changes may not seem to be significant especially in comparison to others. But this shouldn't be a comparison to others nor should it encourage body shaming. All bodies are beautiful and no one should ever feel ashamed of how they look. And no one should judge another person for their appearance nor should someone be judged for their own self-image regardless what others think of that person's physical appearance. My weight changes, however, are significant to me and the change I saw in myself was difficult to come to terms with. 

With time, I became to understand why others said I was "too skinny" before when I was underweight. My doctors tell me it's good "to have some extra weight as reserves" for when I become sick so that I don't lose too much weight like I have in the past. With time, I've come to accept my new body. Sure, I would still like to lose weight to be at that middle ground between to the two polar opposites. But I've realized I may not reach that middle ground level. And that's okay. I can continue to exercise and eat healthy not for an outward change but instead for the internal benefits. With this acceptance has also come a happy medium with exercise as I no longer push myself to exercise every day and instead aim for 3-5 times a week as allowed by motivation levels and how my body feels each day. Sometimes when I look at myself in pictures, I feel that initial shock again of the weight I've gained but I remind myself that my body is not shameful and I can continue to my efforts to help maintain a healthy level of eating and exercise for myself, not for the scale.

Jenny - May 2020

Physical Therapy After Abdominal Surgery

I had my first abdominal surgeries were in grade school from 1995-1996 and endured severe back pain particularly during this time. By the time I was in high school, I started noticing increased back issues as I was unable to sit up from a forward bend position. My doctor referred me to physical therapy where I learned my back issues stemmed from weak abdominal muscles from my abdominal surgeries. After completion of a physical therapy program, my back issues significantly improved. That's why I thought it would be beneficial to learn about physical therapy after abdominal surgeries and so I requested this blog post from a local physical therapist.

This is a guest post by Christine Poteet, a Physical Therapist

 A guiding principle of physical therapy is “proximal stability before distal mobility.” In physical therapy school, my sports professor said this phrase more times than I care to remember, but it got the point across! Basically, it means that if your core (proximal) is not strong enough to handle what you’re doing with the rest of your body (distal), that function or performance will likely be less than optimal and may lead to a breakdown, injury, or pain at or beyond the area of weakness. I liken this to the biblical story of building your house on a rock versus sand. If you don’t build your house on a solid foundation, then, as the story goes, “the rain falls, the floods come, and the winds blow and beat against your house, and it will fall.” Similarly, if your body’s foundation (your core) isn’t strong, it won’t be able to stand up to everything that life throws at you. This may manifest as increased local pain (such as back pain) or pain in other places along with, or due to, the breakdown of muscles, joints, tendons, or ligaments. When your core isn’t doing its job, those other parts are taking on additional stress, and while our bodies are pretty resilient, those other parts can only take that increase in usage for a limited time. Depending on the part, a breakdown could result in a cascade of additional faulty movement patterns and injuries. 

The core is made up of several muscle groups including the abdominals (most famous), gluteals (booty!), pelvic girdle (lots of small hip and pelvic floor muscles), paraspinal muscles (back muscles along the spine), and a few more. These muscles form the walls of a box that surround our internal organs, with the abdominals in the front and sides, paraspinal and glute muscles in the back, diaphragm on top, and the pelvic floor and hip muscles creating the bottom of the box. These muscles stabilize the spine and pelvis, reduce compression forces at the spine, and allow for appropriate force distribution and generation so the body can move with the most optimal efficiency and strength to get the job done with as little stress, compression, shear, etc. as possible (Akuthota, 2008). In other words, these muscles give lift and decompression to the spine, reducing the stress of gravity and the incumbent weight of the body pressing on the vertebrae and intervertebral discs which can cause nerve compression, pain, and dysfunction.

Our core and postural muscles are “on” whenever we are in any position other than lying down, which is typically 16-18 hours per day. Certain core muscles have been found to fire before limb movements in order to stabilize the spine, which is further evidence of the “proximal stability before distal mobility” principal. However, these muscle reactions can be delayed in folks with certain maladies, such as low back pain. So you can see how important they are for everything we do.

Personally, I didn’t have the opportunity to see many folks following abdominal surgery in my outpatient orthopedic practice, but I did see many with low back pain and post back or hip surgeries. Most tend to have an excellent recovery whenever they are consistent with their exercise program. Since my transition to the home health setting, I’ve seen several people, mainly women, who did not have physical therapy immediately following surgery and now have other complications, injuries, or difficulties.  Many of them have required a walker as they were unable to fully stand due to a combination of back pain and core weakness. Keep in mind that my average patient is now about 70 years old. I always include a balance component with my treatments, so I have patients practice proprioceptive exercises at their kitchen counter by standing without holding on. Many of them slowly droop down toward the countertop because their core musculature is so weak that it can’t hold their torso erect for more than a few seconds. After several visits of supine core and lower extremity exercises, not only were these patients able to stand upright for the full 30-second goal, they were also able to maintain a more erect posture with static standing and walking. They also reported feeling stronger and more stable, which translated to observable functional improvements in their everyday lives. 

Physical therapy seeks to reduce post-op complications, including pneumonia, deep vein thrombosis (blood clots), and to improve range of motion, strength, endurance, stability, and restore normal movement patterns. Surgery can disturb the skin, underlying tissues, and nerves, which can result in a lack of coordinated muscle activation. So ,even if the muscles are strong, the nerves aren’t able to communicate with the muscles appropriately, resulting in an inability to contract those muscles in a full and coordinated manner. This is referred to as neuromuscular dysfunction. I tell my patients that the nerve is hacked off about the surgery because it was cut on, moved, or otherwise interrupted. And though the surgery was “for a good cause,” the nerve doesn’t know that and needs time to simmer down.

Physical therapy following abdominal surgery can help restore that nerve-muscle communication, allowing for a more coordinated and efficient muscle contraction. This can manifest as stronger muscle contractions due to increased muscle fiber recruitment and more support of the spine, more efficient movements with fewer substitutions. Meaning you’re using the right muscle for the job, and depending less on random other parts to do the work, which can initiate the cascade of breakdown at or beyond that weak link. Physical therapy can also play an important role in the restoration of overall physical function including muscular strength, cardiovascular endurance, and balance and proprioception. All of these aspects of function are essential to optimal performance of daily life tasks, especially if you have any kind of strenuous demands on your life (i.e. children, sports, job activities, sex, etc.).

Thankfully, many abdominal surgeries are now performed laparoscopically, reducing the invasiveness of the procedures. Minimally invasive procedures have been shown to decrease recovery time, complication rates, and length of hospital stay. (Reeve, 2016) This translates to less disruption of muscle, nerve, connective, and other body tissues improving post-surgical rehabilitation.

EXERCISES

This is by no means meant to replace the professional opinions of your personal physician or physical therapist who can actually lay eyes on and evaluate you, and recommend an individualized program based on what you actually need. But here are some of my favorite basic core exercises to prescribe (and that I do in my own workouts):

The Abdominal Draw In (DI) is one of my favorites because it recruits the deepest of your core muscles - the Transversus Abdominis. This muscle has horizontal fibers that, when activated, function like a girdle around your abdomen giving your spine support and decompression. The DI also simultaneously recruits your pelvic floor muscles which, if you remember from previously in the article, are the bottom of the “box,” and strengthening them can help if you have any sort of urinary incontinence problems (though that’s a whole other topic that I could spend some significant time on). For this exercise, I usually instruct my patient to lay down on their back with knees bent, feet flat on the bed, and tell them, “bring your belly button down toward your spine, like you’re trying to fit into a tight pair of jeans.” Another way of thinking of it is “hollowing out” your belly. Make sure you keep breathing during the exercise - don’t hold your breath. Also, make sure to keep your head relaxed on the pillow or the floor if you aren’t using one - don’t try to lift your head up toward the ceiling. (Pro tip: you might get a cramp in your hamstrings - that’s pretty normal in my experience - just stretch it out and you should be alright.) Depending on the person’s strength, I’ll have them hold the contraction for anywhere between 3 and 10 seconds, and have them do about 10 repetitions. I love this exercise because there are so many variations and progressions that you can add in once they have the basic part down. For example:

 Posterior Pelvic Tilt: This one is much more difficult in concept but easy to execute once you understand. I’m including several links on this one so that you can see it in various ways. Just remember that it’s all about the TILT so that your back presses into the bed or the floor (I recommend doing this on the floor because a bed is very soft and the floor gives you a bit more feedback, so that when you feel your back pressing into the floor, you know you’re doing it right).  

Glute Squeezer:  It’s like you’re trying to pinch a penny between your cheeks. 

 Adductor Squeeze with a ball or pillow between the knees

 Dead Bug: This one is more difficult than it looks and is a progression in itself. I always have a patient start by adding just the arms to the DI and do several reps. Then, when they become proficient with that, I’ll have them switch to just the legs. Then, when they get that down, I’ll have them add arms and legs together - opposite arm moving toward opposite leg. If I see that they can’t keep the back in contact with the floor at any time, the exercise is stopped because the core muscles either aren’t functioning properly or are fatigued. 

 Hip External Rotation:  I generally have the person lay with legs bent, feet flat. While keeping one knee stable, the other knee drops out to the side. Then I progress to bands when they are show good stability and strength with this exercise. The photo shows moving both knees at the same time but I always have them move just one at a time until they show they can control it. 

Bridges are a great exercise for basically all the large muscle groups from core to lower legs. For this exercise, lay on your back in the same position as the DI. Squeeze your belly and glutes and raise that booty up off the ground. Try to make a straight line between your shoulders and your knees. Progressions included in the notes at the end. Start with 5-10 reps and progress to a few sets of 10-15 with breaks in between.

Bridges: 
Progressions:

-       Single leg: (Keep your knees together) 

-       Glute bridge

-       Bridge walkout: Essentially you want to maintain a bridge while walking your feet slowly away from your bottom and then walk them back toward your bottom. 

So many of us have no idea (and neither did I until I became a Physical Therapist) just how much weak glutes affect our everyday lives, especially as we age! Your glutes are not only part of your core, they help stabilize your back and pelvis, especially during strenuous activities such as lifting, squatting, running, or even walking. They’re important in general propulsion during walking and running, and keep hips stabilized during single leg stance (which we do with every step we take as we are at least momentarily standing on one leg). They help the knee track appropriately and when strong, reduce the risk of knee and back injury associated with lifting, running, etc. That’s why maintaining those strong booty muscles is so important. My basic, go-to exercise is the Clam (or clamshell - the internet seems to like this term better for some reason). Lying on your side, bring your knees and feet together and bend at the hip and the knee such that your knees are slightly in front of the rest of your body. Torso should be on the floor and you can rest your head on your hand, a pillow, or your outstretched arm. Raise the top knee up and out (like a clamshell opening). Keep your feet together and don’t allow your top hip to rotate backwards - it’ll have a tendency to do this so you have to fight against it. Put a hand on your top hip so you can feel if it’s moving posteriorly. Again, start with 5-10 reps and progress to sets of 10 with breaks in between. 

 Clams: 

This is a great little video explaining the importance of the glutes, especially for women, and demonstration of the clam exercise. (Even though he was doing a mild backwards rotation of the top hip) Video
Progressions:

-       With resistance band

-       With ball between feet. And a resistance band if you want. I couldn’t find a picture of this but you can just use a medicine ball or a kid’s toy ball (~8-10 inches in diameter) between your ankles.

Another fantastic glute exercise is hip abduction. Abduction just means any motion that moves a body part away from your midline in the frontal plane. Lying on your side again, legs out straight this time, and hips stacked one on the other with a hand on the top hip to keep yourself from dropping that top hip backwards, raise the top leg out to the side. Make sure to keep your knee and toes point straight toward the wall in front of you, not toward the ceiling. This is how you know you’re activating the correct muscle, otherwise you will get another muscle trying to take over (called substitution). Same starting reps as the previous ones, progressing to 2-3 sets of 10-15 and then adding a weight or band.

Hip Abduction:  Her toes are turned downward in this photo, which is fine, but will be more difficult. You don’t have to do this, just make sure your toes are pointed straight forward.
This video shows this and a couple other exercises.  Video
Progression:

-       With band

-       With ankle weight

Christine Poteet is a Home Health Physical Therapist working in the Oklahoma City Metro area. She graduated from the University of Oklahoma with a Doctor of Physical Therapy and has been a practicing physical therapist for 5 years. She has worked in home health for 2 years but began her career practicing and studying orthopedics in the outpatient setting where she became an Orthopedic Certified Specialist. She truly enjoys helping people reach and restore their physical and health potential. She also has 2 giant fur children who pretty much run (circles around) her life. When she is not physical theraping or dog wrangling, she enjoys road cycling, hiking, and various other outdoor activities with friends and family.

 References

 

1. Akuthota V,  Ferreiro A, Moore T, Fredericson M (2008). Core Stability Exercise Principles. Spine Conditions: Section Articles. Current Sports Medicine Reports (7) 1, 39-44. doi: 10.1097/01.CSMR.0000308663.13278.69

2. Reeve J, Boden I (2016). The Physiotherapy Management of Patients undergoing Abdominal Surgery. New Zealand Journal of Physiotherapy 44(1): 33-49. doi: 10.15619/NZJP/44.1.05

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.

Pets and Chronic Illness

Everyday I'm grateful for my pups. I can't imagine not having them in my life in spite of challenges my health can present in the care they require. There are days that I want to stay in bed or am having a short bowel flare and don't want to move except for when I'm required to run to the restroom for the umpteenth time. They have provided me unconditional love and emotional support without fail. They force me to move when I'm not motivated. I truly feel as though I'd be lost without my pups.

Ruhle and Zia

My first real pup that I was solely responsible for was Ruhle, an Aussie mix. I found him at a camp
ground along a river. He ate hot dogs from us for dinner and the next day followed us along the river bank as we canoed down the river. We asked around and he was just a lone campground dog so we took him home. For the entire trip home, he curled up next to my feet in the truck floor bed and was calm as long as he was touching me. My goal was to train him to be a therapy dog and take him to work with me at the nursing home I worked for. He completed three levels of obedience training and obtained his Good Canine Citizen certificate. He loved learning new tricks and loved to perform them. He absolutely loved children and was an incredibly loving pup. When he was 4, we started fostering dogs for the local Humane Society and that's when I fell in love with a little female Carolina Dog and so we adopted her and named her Zia. Ruhle and Zia became extremely close. As he aged, he became like a grumpy old man and no longer enjoyed going to dog centered events. He loved our pup Zia but didn't enjoy other dogs so much anymore. He developed Kidney Disease and he unexpectedly passed when he was 10. Losing him broke my heart and Zia's heart. She wasn't herself without Ruhle so I decided she needed another buddy. I was looking for an older female pup this time, small to mid size, who would get along with Zia well. The female I wanted to adopt was too large and dominant for Zia. Zia is small but all muscle and stands her ground. I wouldn't be able to bear the thought of her fighting and being at risk of being hurt by another animal. And I discovered she does better with male dogs. We went to another shelter and I spotted a medium to large 2 year old male Catahoula mix who

Azriel ad Zia

had spots like Ruhle. And I just knew - I needed to get to know this dog. He wasn't what I was looking for at all as a companion for myself and Zia. The shelter let him and Zia out in a fenced yard and they got along well - he was even submissive to Zia. He has a large scar on his hip and a torn up ear. He spent a year in the shelter and is terrified of men. He definitely has a traumatic history but he took to me right away. We took him home as a trial and within a couple of days I knew he was for us. I named him Azriel. He is attached to my hip, is still learning some commands and although he remains scared of men, he has shown the ability to love on male friends of mine if they're patient with him. Zia even acts like she likes him on occasion and will at times run around with him. She no longer acts withdrawn and sullen.


There are plenty of studies showing the physical and mental health benefits of animals. According to Maslow, one of our hierarchy of needs is belongingness and love. Animals help meet this need, particularly for those who live alone. According to the Centers for Diseases Control and Prevention, animals have also been shown to increase fitness and happiness while decreasing stress with lower blood pressure, cholesterol and triglyceride levels, feelings of loneliness and improving socialization and exercise opportunities. Caring for an animal not only provides benefits to physical and mental health but it can also teach responsibility. Studies are showing that the responsibilities of caring for a fish helped teens better manage their diabetes and helped children with ADHD focus their attention. Children who read to animals have also shown an increase in social skills, sharing, cooperation, volunteerism and a reduction in behavioral problems. Children with an Autism Spectrum Disorder have shown decreased anxiety, improved social interactions and engagement with peers from a few minutes of interaction with guinea pigs. Service dogs, Therapy dogs and emotional support animals have for a long time demonstrated how helpful an animal can be physically and emotionally.

A pet is not necessarily for everyone. When considering adopting an animal, one needs to take into consideration the financial and physical requirements a pet will demand. Some pets may be less expensive in their maintenance and care than others. A high energy animal may not be the best idea for everyone. Housing and outdoor access will vary from animal to animal as well. Who will provide care to your pet if you travel or are unable to care for your pet for a period of time?


We can receive companionship from all sorts of animals though so if a dog or cat is not a particularly good fit, perhaps a different animal would be such as fish, rabbit, bird, hamster, etc. If you're interested in adopting an animal but unsure what may be the best animal for you, talk to someone at a rescue group, shelter, veterinarian clinic, or pet store such as Petsmart or Petco.


Another great option that is an alternative to the lifelong commitment of a pet is to foster for a local shelter or rescue group. Fostering allows a shelter/rescue to free more space for another animal in need, provide a temporary home to an animal and one can still benefit from the companionship of an animal while in their care until they've been adopted. Additionally, volunteering at a shelter/rescue group is another great opportunity to benefit from the care of animals with limited responsibility and is a much needed source of help to such organizations.

Vitamin D Deficiency

I remember in high school my doctor told me I was low on Vitamin D and to try to go out in the sunlight more. It wasn't suggested that I start taking a Vitamin D supplement until about a year ago when I complained of my struggle with my chronic fatigue to my adult GI doctor. He decided to draw lab testing various elements other than just my Iron and B12. This time he checked my Folate, Vitamins K and D to be on the safe side. Following the results, I was directed to start taking Folate and Vitamin D to bring them back into range and help combat my chronic fatigue. I was started on a high dose of 50,000 IU a week of Vitamin D for a couple of months with my level to be rechecked. With improvement to my Vitamin D level, I was able to change to 1,000 IU daily to maintain my level improvement and I was able to find this amount over the counter at a local grocery store in the pharmacy section.


It seems as though it is a lot easier to be deficient on Vitamin D than one may realize. We process Vitamin D through sunlight, diet, and supplements but we often are not in the sun enough to maintain adequate Vitamin D due to a variety of reasons such as season, cloud cover, air pollution, skin color, and location to equator and there are a limited number of foods with Vitamin D. There is also the risk of skin cancer with prolonged sun exposure to consider. So it may be likely that a supplement needs to be added to one's daily regiment in order to maintain an appropriate Vitamin D level.


Vitamin D acts as a hormone that functions in the intestine, kidneys, and bone to help stimulate transport of calcium and phosphorus to reduce the release of the parathyroid hormone that reabsorbs bone tissue. Both functions help us to build and maintain strong and healthy bones. Calcium and Phosphorus are both minerals that serve important functions and can be dangerous at too high or too low of levels. Calcium also needs Vitamin D for proper absorption. Vitamin D also helps maintain our muscle function and immune system to fight off illness and infection. Some studies suggest Vitamin D may also help to prevent cancer as well as other diseases such as diabetes, heart disease, high blood pressure, dementia, and multiple sclerosis. Vitamin D is essential to help protect bones from becoming too thin, brittle, or misshapen as children are at risk of rickets and adults are at risk of osteomalacia and adequate Vitamin D can help prevent osteoporosis in adults as well.


Infants who are only breastfed are at risk of Vitamin D deficiency as breast milk contains a small amount of Vitamin D. Therefore, the American Academy of Pediatrics recommends breastfed infants be given a liquid multivitamin or 200 IU daily for their first two months of life and 400 IU afterwards until they are drinking formula or milk that are fortified.


The highest diet source for Vitamin D is cod liver oil followed by sources such as Swordfish, Salmon, Tuna, Fortified Orange Juice and Milk. Other sources at smaller amounts include Fortified Yogurt and Margarine, Sardines, Beef Liver, Egg Yolk, Fortified Cereals, and Swiss Cheese. Vitamin D is fat soluble therefore opting for fat free or low fat with Vitamin D options will result in poor absorption.


Your doctor can easily check your Vitamin D level with a simple blood test and recommend if you need higher or lower amounts of Vitamin D. The Institute of Medicine recommends for the average adult under the age of 70 to intake 600 IU a day and 800 IU a day if over 70. Some professionals suggest these recommendations remain too low for what is actually needed.


The body may have difficulty absorbing or processing Vitamin D due to issues such as:

• Kidney or Liver Diseases
• Cystic Fibrosis
• GI diseases/conditions
• Gastric Bypass Surgery
• Obesity

There are medications that may also lower Vitamin D level such as:

• Laxatives
• Steroids
• Cholesterol Lowing Drugs
• Seizure Control Drugs
• Rifampin
• Orlistat

Signs of low Vitamin D include:

• Frequent illness or infections due to lowered immunity, particularly respiratory tract infections
• Fatigue
• Bone and Back Pain
• Depression
• Impaired Wound Healing
• Bone Loss
• Hair Loss
• Muscle Pain

It's important to have your doctor monitor your Vitamin D level not only to ensure that you're obtaining enough Vitamin D but also to prevent too high of a Vitamin D level.
High Vitamin D can cause:

• Nausea, Vomiting, Constipation, Poor Appetite
• Itching
• Increased Thirst and Urination
• Weakness
• Weight Loss
• Confusion
• Heart Rhythm Problems
• Kidney Damage
• Pancreatic Cancer
• Ataxia - a condition that can cause word slurring, stumbling

Vitamin D supplements come in two forms - D2 and D3. D2 comes from plants and requires a prescription whereas D3 is the form that is made by the body when the skin is in contact with the sun and is found in animal sources. D3 is available over the counter and is more easily absorbed and lasts longer in the body from dose to dose.


Even if you are not exhibiting signs of Vitamin D deficiency it can be helpful to request a Vitamin D level check just to be on the safe side.

Anemias and Bowel Disorders

Anemia is a common disorder for those of us without a colon, particularly if we are also missing a part of our small intestine.
Anemia occurs when a person doesn't have enough healthy red blood cells to carry adequate oxyen throughout the body. This condition can cause:

• Fatigue
• Weakness
• Pale or yellowish skin
• Irregular heartbeats
• Shortness of breath
• Dizziness or lightheadedness
• Chest pain
• Cold hands and feet
• Headaches

It's important to catch anemia early as the symptoms can worsen with prolonged anemia and there are increased risks to the heart. There are two types of anemia common for those with bowel disorders:

• Iron Deficiency Anemia

This occurs when there is a deficiency of iron. This lack of iron makes it difficult for the hemoglobin to be produced which enables red blood cells to carry oxygen. In addition to the common symptoms of anemia, a person may also experience:

• Inflammation or soreness of the tongue
• Brittle nails
• Unusual cravings such as ice, dirt or starch
• Poor appetite

For those with GI issues, simply increasing food intake of iron rich foods is not typically enough to correct the iron deficiency anemia. Iron pills and iron infusions are common to help manage iron deficiency anemia. Iron pills can be Ferrous Sulfate, Ferrous Fumarate, or Ferrous Gluconate with the latter being easier on the stomach than the former. Vitamin C (250 mg daily) can also help with iron absorption. It is important not to drink tea within two hours of taking iron supplements as the tannins in tea can interfere with iron absorption. It's important to consult your doctor regarding how much iron to take as at high doses iron is toxic.


Try incorporating these iron rich foods into your diet:

• Red meat, pork, poultry
• Seafood
• Beans, lentils and peas
• Dark green leafy vegetables
• Dried fruit
• Iron fortified cereals, breads and pasta

• Vitamin Deficiency Anemia

This occurs when the body doesn't have enough Folate, Vitamin B12 and Vitamin C that's needed to produce enough healthy red blood cells. This also is called Megalobalstic Anemias.

In addition to the common symptoms of anemia, Vitamin Deficiency Anemia can also cause:

• Weight loss
• Numbness or tingling in hands and feet
• Unsteady movements
• Personality changes
• Mental confusion or forgetfulness

It is common for those with bowel disorders to also be low on folate and Vitamin B12.


Folate is also known as B9 and is found in fruits, leafy green vegetables, nuts, and enriched grain products. Folate can also be taken as a supplement, commonly in a daily multi-vitamin.


Vitamin B12 is found in meat, shellfish, eggs, and dairy products and can be taken via an injection, oral solution or in a pill form. Cyanocobalamin is the synthetic form of Vitamin B12. Vitamin B12 also needs to be monitored as too high of a level can cause inflammation to occur.


Vitamin C can be found in broccoli, citrus fruits, strawberries, sweet peppers and tomatoes and can help with the absorption of iron.


To help manage both my iron and vitamin deficiency anemias, I take several medications:

• Ferrous Gluconate 28 mg from Puritan Pride - I take 2 pills every time I eat something but I allow a 2 hour window between consumption of tea and these pills
• B12 Microlozenge 5000 mcg from Purtain Pride - I take one pill three times a week. I take the microlozenge with food and let it melt under my tongue before swallowing for best results. I've found that if I chew it and don't take it with food then it isn't absorbed and taking it three times a week helps keep my B12 level below an inflammation level.
• Vitamin C - I cut a 500 mg tablet in half so that I'm taking the recommended 250 mg a day to help with iron absorption and thereby stretching my supply of Vitamin C. I found that 250 mg tablets are more expensive than the 500 mg tablets.
• Multi Vitamin with Folate - I take one daily to help maintain my folate level.

For your best functioning, it's a good idea to have your doctor monitor your iron levels and vitamin levels to determine if you are low on any levels and to develop a plan to treat any deficiencies. 

What We Need From You

Chronic illness is a challenge, period. It's a challenge for those who live with the illness on a daily basis, for caregivers of the ill person, and for those who are involved with the person outside of the home. Chronic illness often leaves those in its wake feeling frustrated and helpless. The ill person struggles to live daily life with the symptoms of chronic illness and friends and family are limited on what they can do to help the ill person. To make matters worse, those of us with chronic illness are often hesitant to ask for help from others due to feeling burdensome and are frequently at a loss ourselves as to what may be helpful. To help all of us, here's a list of things we need from you due to chronic illness.

We need you to be available.
Chronic illness can be extremely isolating at times, particularly if it is a rare disease. Depending on the diagnosis, it can be difficult to identify and communicate with others with the same illness. Social media has helped close the distance among individuals with the same illness but in person visits remain different from online communications. We are further isolated due to difficulty to physically leave our homes except for our medical appointments. Even when we want to visit with others we may not physically feel up to visiting regardless of the communication form. We frequently experience hospitalizations and may only experience encounters with medical providers. Your presence in person, on the phone, or online is a tremendous support to us when we are able to do so.

We need you to listen and encourage.
Due to the elevated risk of isolation among those with chronic illness, we are at higher risk for depression. We easily become frustrated, discouraged, and depressed regarding our health issues and daily struggles. Your willingness to listen to our concerns and to encourage us along the way has an immense impact on our mental health.

We need you to be understanding and forgiving.
Changes in our health and abilities often causes us to feel angry and frustrated as we are adjusting to chronic illness. Furthermore, when we don't feel well we may be ill tempered. We don't mean to direct our frustrations and anger toward others. A gentle reminder when we are acting unfair will help us to realize any damaging behavior and allow us the chance to correct any harmful behavior. Your understanding and forgiveness is paramount in this process.

We need you to help us feel accepted and loved.
Chronic illness typically means changes to our bodies and abilities that may not be visible to others but we remain acutely aware of such changes. We may have difficulty accepting such changes and become insecure and self-conscious of our bodies, symptoms we are experiencing, abilities, and our self-worth. We all want to be accepted by others and this desire may be heightened by chronic illness. Your acceptance helps us to accept ourselves when we are struggling with self-love and acceptance.

We may need your physical assistance.
Chronic illness is high maintenance requiring ongoing medical management that includes frequent medical appointments, tests, procedures, medications and more. These tasks are demanding physically and mentally. As abilities are challenged by chronic illness, we may require your physical assistance in the form of transportation to appointments, assistance obtaining and taking medications, household chores such as cooking, shopping, and cleaning. Changes in our abilities often leaves us feeling as a burden on others resulting in our hesitancy to ask for physical assistance even when it is greatly needed.

We may need you to help us find assistance.
Chronic illness can easily create financial difficulty due to inability to work temporarily or permanently. Our finances may easily be overcome with medical expenses. Locating appropriate resources is not an easy task when one is sick. Therefore, your assistance in locating and applying for resources may be of great service to us during a time that we are having difficulty physically or mentally functioning.

We need you to help advocate.
As a patient, we benefit from advocating for ourselves but your advocacy on our behalf would also be advantageous. We may not always have the physical fortitude to speak up or we may forget questions to ask. You can help us by attending appointments with us and listening to the information presented by medical providers. Additionally, advocacy efforts on a larger scale directed toward public awareness and legislation are stronger with participation by patients and loved ones.

We need you to help us enhance our physical comfort.
Chronic illness often is exacerbated by physical symptoms that are distressing and even painful. We've learned little tricks to help ease our discomfort such as using heating pads, rubbing a painful body spot, or even taking a nap. When you are near, you can help by handing us objects such as a heating pad or our medication so that we may limit our movements, particularly when movement is painful. Sometimes a gentle rub on the afflicted body part or even something as simple as playing with our hair can be soothing. We often fight fatigue that negatively affects our sleep schedules. In such cases, helping us limit our nap time will help us maintain an appropriate sleep schedule while boosting our energy.

We need you to take care of yourself.
Lastly, we realize that providing care and comfort to a chronically ill person can be difficult on others and want your well-being to be taken care of as well. Caregiver burnout can be detrimental to all involved and the last thing we want is our illness to be harmful to you. We understand that one cannot provide around the clock care for us and maintain one's own well-being. Self-care is important for everyone, not just those with chronic illness.

We may not say it enough but all your efforts to support and assist us in the walk of chronic illness is greatly appreciated and we are far better off with you in our lives than without you. We thank you for all your efforts.

When Chronic Illness is a Deal Breaker

It was only about an hour of my time, he had already asked me out on a date. But that all changed when I told him about my health. I've never had someone point blank tell me my chronic illness was a deal breaker for them. My boyfriends and friends have always been supportive and understanding of my health issues. I've been fortunate to surround myself with empathetic individuals.


I do not know what his reasons were nor did I care to know. I knew what was important, it was a deal breaker and although taken aback a bit, I was glad to know sooner rather than later and I hadn't wasted that much time on our conversation. My first thought though was "I'm glad this happened now and not when I was a teenager or young adult". I had my ostomy when I was 9 until I was about 15. Growing up with an ostomy was very difficult for me emotionally and mentally. My self esteem suffered greatly under the pressure of growing up with an ostomy and later it would be an issue after my ostomy reversal and dealing with Short Bowel Syndrome. I was not as confident in my body or my health issues nor was I as honest and upfront about my health as I am now. How devastating it would have been for my fragile ego as a teenager or young adult to be told that my health made me not good enough for a relationship. Now I realize this is not a reflection on me but on the person making such a statement and so I am merely grateful to have that person out of my life.


It also worried me about this person in particular as he cares for children as a nurse practitioner in a children's emergency room. If he could be so non-understanding with an adult, how is he treating his young patients for their health issues? And what about his future partner as her health declines over time? My heart ached for these people affected by his poor attitude toward illness. I escaped with very little time invested but my well-being is not in his hands.


Working in healthcare myself, I look forward to romantic interests and friendships with other healthcare professionals as we are accustomed to dealing with illness and all the usual worries individuals have about illness and symptoms can be put aside with healthcare professionals. Evidently this is not the case for all healthcare professionals but I still believe it is with the majority of us. Most of us are desensitized to symptoms of illness and disease and so we can let our guards down with one another. I suppose with any other field or persons, there are good ones and bad ones.


If you are confronted with a person who decides your worth is not deserving due to your illness, I encourage you to not take it personal and try not to let it affect your mental well-being as this is a pure reflection on that person and not on yourself. You are greater than this judging person. You are worth a lot and deserving of all the love and kindness in the world just like anyone else. Your illness does not detract from you as a person. If anything, it adds to you as you are a survivor with wisdom and strength others are not privy to with their good health. Hold strong in yourself and shrug off the haters.