Thursday, March 19, 2020

The Whipple Procedure

If you're within the Familial Adenomatous Polyposis (FAP) community, you likely know at least one person who also had the Whipple Procedure. Due to the high precancerous polyp growth associated with FAP, it is common for FAP patients to also develop polyps in their stomach including the duodenum, the area that leads from the stomach to the small intestine. Often these polyps become too large and will block this opening or turn cancerous. Often the polyp(s) can be removed during an EGD procedure but sometimes require surgical removal resulting in the Whipple Procedure. Another common procedure due to a polyp blocking the bile duct is the ERCP (endoscopic retrograde cholangiopancreatography) that results in a stent placement to keep the bile duct open after polyp removal.

The Whipple Procedure is also called a Pancreaticoduodenectomy. This surgery removes the head of the pancreas, the gallbladder, duodenum, and a portion of the bile duct and stomach. In some cases, the stomach is not removed and this modified version of the Whipple is called a pylorus-preserving Whipple. The remainder of the pancreas, stomach and small intestine are then reconnected. The surgery in both instances typically requires 5-7 hours to perform.

Due to the complexity of this surgery it can take months to a year for someone to fully recover and feel like themselves again. With the removal of part of the pancreas, diet changes may be required to help reduce symptoms of diarrhea, gas, and stomach pain and may require medication to help with digestion and reduce acid.

Diet changes may need to include:
  • Avoid or limit fried, greasy or high fat foods
  • Consume fat from healthy sources such as olive oil, canola oil, peanut oil, nuts, seeds and avocados
  • Consume 2.5 cups of fruits and vegetables per day
  • Eat small meals and snacks to prevent feeling overly full and for easier digestion
  • Drink at least 6-12 cups of fluids daily to reduce fatigue, light-headedness and nausea
  • Limit fluid intake during meals to prevent feeling overly full or nauseated
  • Avoid alcohol
  • If nauseated on an empty stomach, small bites of dry food are typically tolerated better than liquids
  • Avoid concentrated refined/simple carbohydrates to prevent glucose intolerance or dumping syndrome symptoms
    • Glucose intolerance symptoms include increased thirst, frequent urination, blurry vision and fatigue
    • Dumping syndrome symptoms occur within 2 hours of ingestion and include flushed skin, light-headedness, weakness, abdominal pain, nausea, vomiting and diarrhea
Vitamins and supplements may be required due to malabsorption following the Whipple procedure. These may include:
  • Calcium
  • Iron
  • B12
  • Vitamins A, D, E, and K
Risks of the Whipple Procedure include:
  • Bleeding
  • Infection
  • Delayed emptying of the stomach after ingestion
  • Leakage from the pancreas and bile duct connection
  • Difficulty with digestion
  • Weight loss
  • Diabetes
It is recommended to choose a surgeon well-versed in performing the Whipple and a hospital where 15-20 Whipple procedures are performed annually for the best results.

My mother required the Whipple Procedure 13 years following the removal of her colon with a permanent ileostomy due to colorectal cancer as a result of FAP. She had a polyp obstructing the opening of the common bile duct that caused a backup of bile and frequent pancreatitis. My mother had a difficult recovery and due to her high level of pain from the surgery became addicted to pain medication for a brief period. The pain medication addiction only worsened her recovery as she was unable to obtain the rest she needed. Soon after her Whipple, she was diagnosed with Type II Diabetes due to the removal of part of the pancreas and she now requires insulin. Years after her Whipple, she began requiring Vitamin D and K on a regular basis. In early 2020, she required an ERCP stent placement due to recurring polyps and scar tissue at the reconstructed bile duct.

The Whipple Procedure is a demanding, risky surgery that no one wants to require but it can be life saving. However, with routine monitoring of polyp development one has increased prospects for the best treatment and health outcomes possible.

Tuesday, March 10, 2020

Finding or Establishing Support Groups

It can feel lonely when you're diagnosed with a rare disease, such as Familial Adenomatous Polyposis (FAP) or Short Bowel Syndrome (SBS). After all, these are rare diseases and so there isn't near the support or media coverage available as there is for well known, more common illnesses. Finding support can be increasingly difficult depending on where you live as well. It's more likely to find support if one lives near a large research hospital such as Michigan Medicine University of Michigan, Cleveland Hospital or Mayo Clinic. Finding support is easier now than it was 20+ years ago when I was diagnosed with FAP and SBS though with technology and social media.

I remember how important my local UOAA ostomy support group was for me after my first surgery that removed my colon and left me with an ileostomy for 6 years before having a straight pull thru. There wasn't usually anyone my age at the meetings but I was able to meet others outside of my family who also had ostomies. Their reasons for their ostomies were not the same as my reason or diagnosis but it was helpful to know I wasn't alone. My pediatric GI also told me about the Youth Rally for kids and teens with ostomies or other diversions for their bladder and bowel and I attended as a camper for four years until I graduated high school and I even went back as a counselor for two years. Between the support of my family, the ostomy support group, my friends and counselors at Youth Rally, and a therapist I was able to learn how to adjust and cope to life with rare disease and an ostomy. My local UOAA support groups even helped sponsor my trips to the Youth Rally and when I returned I was allowed to share my experience and pictures with the support group.

One can find online support for the rare diseases of FAP and SBS by doing a simple search on the web or on Facebook. There are several groups for both diseases including for colon cancer, ostomies, and reversals. A well established online group is Colontown with various neighborhoods to help meet the vast array of needs and conditions that are associated with colon cancer. However, what if you want a face to face group and there isn't one in your area?

Kevin helped establish a Peer Discussion Group for Hereditary Colorectal Cancer in Ann Arbor, Michigan and was kind enough to share his tips for establishing your own group. Kevin recommends:
  • Locating and talking to a genetic counselor about your interest in establishing a group
  • Identify local medical facilities or hospitals that treat Hereditary Colorectal Syndromes such as FAP and Lynch Syndrome. The above HCCF Provider Directory may be of assistance with this as well
  • Talk with a local genetic counselor about identifying doctors who treat Hereditary Colorectal Syndromes to discuss with your interest of establishing a group
  • Identify a meeting venue such as:
  • Speak with the program director at the potential meeting venue about establishing a group at their facility
  • Identify a possible facilitator for the group. Some venues may have requirements for the facilitator such as someone with a social work degree or special training
  • Create a website or social media group for your group. An online Facebook group should be monitored regularly for appropriate contact and is suggested to be a closed group for privacy
  • Once a venue has been secured, communicate the group's details to Hereditary Colorectal doctors, genetic counselors, local papers and radio stations, social media sites, etc
  • Quarterly presentations of topics of interest are recommended such as topic experts including:
    • Genetic Counselors
    • Hereditary Colorectal Doctors
    • Dietitians
Keep in mind that it may also be helpful to get in touch with others who have established groups for any medical condition for guidance in the process, not only those who have established the same type of group you are wanting to establish. Having a partner to help in the creation of a group can be helpful as it is a lot for one person to take on in establishing and maintaining a group. Rural areas are less likely to have genetic counselors but perhaps there is one within reasonable distance or other individuals in the surrounding areas that may be interested in helping to establish a group.

Kevin has generously offered his guidance in establishing your own support group if you would like to contact him via email or phone: 734-476-7425

If you establish your own support group, share it with Life's a Polyp to help promote your new support group!

Tuesday, February 18, 2020

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.

Thursday, January 23, 2020

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.

Tuesday, January 7, 2020

Vitamin D Deficiency

life's a polyp

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.