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

Socializing in a Pandemic

As the year is drawing to an end and the holiday season has begun, it got me thinking about how different socializing is with my loved ones.

The holiday season doesn't hold much significance for me although my family does have its own traditions. For Thanksgiving, my parents and I like to go to my favorite Chinese restaurant for the treat of Dim Sum. Since purchasing my home a few years ago the tradition has been for my dad's family to join us for Christmas at my house during the first week or two of December for a meal cooked by my parents. Then my parents and I like to have a meal just the three of us on actual Christmas day. My parents and I decided to downsize our holiday meals a few years ago and it has greatly reduced holiday stress all around for each of us.

This year is different though thanks to Covid. My parents and I have been having a meal together once every week or two. We all wear masks and socially distance from one another. We don't even hug each other anymore. We were planning to have Indian Tacos together with my boyfriend, Mike, for Thanksgiving. That was until Mike was exposed to someone with Covid so both of our families decided to cancel any get-togethers. We both remain asymptomatic and are awaiting testing. To truly know if you're positive for Covid, it sounds as though daily testing is what's actually needed. According to Harvard Health Publishing, if you test too early or too late, there aren't enough viral particles to detect the virus. This has made it more difficult to determine when Mike should be tested as we are uncertain when exactly he was exposed or when that person started experiencing symptoms. We also didn't want to risk a false negative and then expose anyone in our families to us if one of us is actually positive for Covid.

My dad is the youngest of 8, the oldest being in her late 80s. As he and his siblings are older, we decided not to host a Christmas meal for the family. My parents and I still plan to have a meal together, however, that is subject to change as life is unpredictable during a pandemic.

Being apart from family for the holidays is a small price to pay to help maintain my health and theirs. I greatly miss being able to hug my parents but my priority is keeping them safe. This is particularly true as I am still working in the medical field and am exposed to many more individuals than my parents.

Technology has been a blessing during this year so that I may text, call, and video chat my parents and my nieces. It isn't the same as an in-person visit or hugging a loved one. It remains an option to be grateful for though. One of my patients told me that every Saturday he and his wife video chat with all of their children over dinner. Each week someone chooses a recipe and every household makes the same meal that they then enjoy while video chatting together.

It has been difficult to not be able to see my friends or my nieces as often as I usually would have this year. I did take the risk of spending a day with my best friend and her family during the summer, Mike and I went on a vacation to Colorado, and I had an outing with each of my nieces this Fall. I feel as though it has been particularly hard on my nieces not being able to have our usual outings as I want to keep them and myself healthy. I'm fortunate to have the companionship of Mike to help me cope with the stress and isolation of this year. Since we are our own grouping, I am able to receive all the hugs from him that I'm missing from my parents. Not everyone who is isolating has that blessing. I am grateful that Mike and I started dating prior to the pandemic starting as I would not have felt comfortable being involved in the dating world during these times. 

Our families have been kind to offer to drop off a part of their holiday meals so that we may still partake as we are able without potentially placing them or others at risk. This holiday season looks quite different than years past but hopefully, we'll be able to look forward to many more holiday seasons together if we remain safe and cognizant during this time.

As the progress of a Covid vaccine advances, I'm hopeful that by this time next year the world will be very different from what it is like today. I wish you all the best health - physically and mentally during these times. Reach out to loved ones as safely as possible - not only for your well-being but theirs as well. We all need one another, perhaps more now than ever. 

FAP and a Feeding Tube: Jeni LeeAnn's Story

This is a Guest Post with Jeni LeeAnn

I grew up knowing I had a 50/50 chance of having Familial Adenomatous Polyposis (FAP). My dad found out he had FAP just before I was born. His mother had FAP and all she knew growing up was that there was some family digestive disease that was killing some family members. She would up dying at 51 years old from complications of a Desmoid tumor when I was age 6.

My story is a little more complex because I was born with no nasal passages and had many surgeries before I could even remember. I do remember spending a lot of time in the hospital and doctor offices as a child. I was always preparing for a surgery or recovering from one. 

When I turned 16 we did the typical scopes to see if I had FAP. Sure enough I had FAP. I don't remember being sad or depressed about it. It was just another thing to deal with. I was no stranger to hospitals and surgery, so for me it wasn't a huge deal.

I had my large intestine removed when I was 20 and reconnected to my rectum so I don't have an ostomy. Life for me was pretty normal for the next 10 years, just yearly scopes and whatnot. I felt blessed and had no major issues.

Jeni LeeAnn

That all changed in 2009 when I started to have nausea, bloating, and pain. My doctor at the Cleveland Clinic did all the normal scans to see what was going on. What would follow would be about 10 years of guessing and uncertainty. He would do 7 surgeries to try to find out what was going on. Two surgeries were laparoscopic and 5 were full open surgeries. Finally, we found Desmoid tissue where my stomach and small intestine meet. It is as my doctor puts it "strategically placed for maximum damage", if it were even one inch lower it would not be an issue.

The hardest part of this time was the fact that I felt crazy. Every test and scan he did came back normal. I felt like it was all in my head. I even tried telling myself there wasn't a problem and would force myself to eat. That would only cause more issues such as being sick for a week following forced eating.

I was incredibly blessed by my doctor, he trusted me and knew what I was was the way it was. He never once said "sorry, I don't see anything on the scans so I can't do anything for you". He always said "I know something is wrong, we just don't know what it is yet". I know if I had many other doctors, they would have given up on me. I am beyond thankful for my doctor, who kept fighting for me.

The last 5 years have been a series of surgeries to put mesh around the Desmoid tissue and keep it at bay. This sadly, only gave me three weeks of freedom for my symptoms and would have a three month recovery due to the amount of surgeries. This seemed like a very high price for only three weeks of freedom. Then things progressively got worse to the point where after my last surgery in December 2019, I was loosing half a pound every day. I just was not able to eat or drink enough. It became mentally exhausting. So we decided to try a feeding tube. In March 2020, I had my Jejunostomy feeding tube (J-tube) placed.

Now, July 2020, I have had my feeding tube for almost 5 months and it has not been without complications. I had issues with granulation tissue as my body was healing from the surgery. The feeding tube had to be placed a second time which created a second hole. Due to Covid19, my doctor didn't want to risk infection due to any leaks from ingesting food or drink so I was nothing by mouth for three weeks until the hole was healed. 

I clean my feeding tube daily, keeping the site dry and flush the tube every three hours to keep it clean and for me to remain hydrated as I have difficulty drinking enough fluids. I complete nightly feedings for 10-12 hours with a nutrition formula I obtain through a home health agency. I obtain about 75% of my nutrition, or 1000 calories, through the feeding tube and about 500 calories from oral ingestion.

The feeding tube has given me my quality of life back. Food now is back in its proper place in life. It's something I can enjoy when it sounds good not something I have to force and get sick from. I feel incredibly blessed.

Jeni LeeAnn obtained a Bachelor's in Ministry Leadership and has served with her church in various capacities for the last 25 years. Jeni particularly enjoys working with her church's female youth as a youth leader.