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!