A platform aimed to fight pancreas disease with support and knowledge

December 2020 issue 2
Dearest warrior friends,
As we step into the final stretch of 2020 and begin the preparations of heralding in a new year, I believe I'm not the only one experiencing mixed emotions. For many of us 2020 has been a year fraught with anxiety, uncertainty and a hefty dose of fear. Being in the category of people carrying the extra weight of co-morbidities is stressful. Many of us have lost loved ones and had to take extra measures of precautions. And as the weeks turned into months, we have had to tap into those coping mechanisms, adapt and adjust. So if there is one huge thing I learned this year, that we have this powerful ability to tap into that reservoir of strength that we all have inside of us. We can view a global pandemic as a challenge, rather then a disaster. And when we do that, our entire mind set shifts, and the going gets a bit easier. Because if we view it as a challenge, the executive function part in our brain wakes up and we become compelled to make decisions, problem solve and continue to plow through.
Some of you may know, that I became symptomatic with pancreatitis at the age of 6. and over the next 10 years two of my siblings got sick too. Pediatric pancreatitis has a very special place in my heart. I am so thankful that Dr Haija, from Cincinnati Children's has agreed to join The Pillar in our new Pediatric column. Thank You DR Haija! Please don't hesitate to contribute questions and topics you would like to be addressed.
Also joining us is Angele Heller. Angela is a social worker at the @Pancreas center of Columbia and serves as our wonderful support group facilitator. Angele inspired me to start The Pillar initiative. This issue, Angele shares some wonderful tips on how to navigate social situations during the holiday's. Don't miss this!
I wish you all a beautiful meaningful holiday. Have a merry Christmas, happy Hanukkah, and a happy New Year!!
Stay safe and be well, Aidel
Pain stemming from pancreas disease can be debilitating. In an effort to lower some of the pain, we need a trusty sidekick. Heating pads are lightweight, compact, portable and reliable. As long as you have an electrical plug, you are good to go! But the market is flooded with option, which one to get? Here is a small breakdown of some of the top heating pads, and their pros and cons. Note: you can now select Amazon smile to donate a portion of proceeds to the National Pancreas Foundation


  • Pure enrichment purerelief XL: This heating pad has consistently ranked as one of the best. Pros This pad feels amazingly soft on the skin, has 6 heat settings and heats up quickly. A bonus 5 year warranty is included. Cons- the remote and cord are a bit too bulky Click here

  • Sunbeam Xpressheat heating pad: This pad is exceptionally well made. It is conveniently sized, perfect to take along with you on the go. Pros- it has a one hour shut off which is a great safety feature. The pad is also machine washable. Cons- the cord is bulky and difficult to get out of the way Click here

  • GenianiXL heating pad is affordable, effective and built to last. Pros- this pad is flexible to use in any body location, is machine washable and includes a 5 year warranty Cons- it is not as large as described, it does not include an auto shutoff safety feature Click here

  • Sable xxxl heating pad- This pad comes with 6 different temperature setting. Pros- known for its comfort. This pad includes a built in auto shut off Cons- this pad does not do so well in the washing machine and the controller is too close to the pad. Click here



Mark your calendars:
National Pancreas Foundation inaugural
"Rocking Party" virtual gala and fundraiser!

The NPF is proud to host a spectacular gala which will feature entertainment by rock legend Peter Frampton!! Awards will be distributed and some exciting new initiatives will be revealed. You don't want to miss this dazzling gala scheduled on Saturday January 30 2021 7:00- 8:30 Get your tickets here



Medtronic insulin pump upgrade will finally have the ability to pair with your phones!

If you have Diabetes3c and are using the Medtronic system, you know the frustration of not being able to see your trends on your phone. This is now about to change with the 770g upgrade. No longer will users have to take out their pump to check blood sugar levels. click to view eligibility criteria


Is stem cell therapy a potential treatment for pancreas disease?



As medical advances continue to rise, patients with pancreas disease are left wondering "are they working on a cure for our disease"? As stem cell therapy gains momentum, scientist are exploring the potential role stem cell therapy play in rejuvenating pancreas tissue and preventing complications. Read the latest updates here

Dr John Poneros MD is an Associate Professor at Columbia University's College of physicians and surgeons, and the medical director of the Pancreatitis program at the Pancreas center of Columbia. He also serves as the Director of the Endoscopy unit and clinical chief of the Division of Digestive and Liver Diseases at NYP/Columbia, and is also a fellow of the American Society of Gastrointestinal Endoscopy and New York Society for Gastrointestinal Endoscopy. Dr Poneros has also been instrumental in establishing the New York region's first Pancreatitis support group. Please refer to #Resources for contact information.

Question: Thankfully, the medical community continues to have a better grasp of pancreas disease. Years ago, ERCP procedures were performed frequently and the risk of a resulting rebound acute flare was not established. Currently, ERCP procedures are done very cautiously in favor of the less risky EUS. What is the difference between an ERCP and an EUS? For what reasons is one indicated over the other?

Answer: Let's describe the differences in both procedures and compare its role in pancreas disease.
An Endoscopic Retrograde Cholangio-Pancreatograpghy A.K.A ERCP requires the passing of an endoscope and subsequent catheter into the pancreatic duct, or into the bile duct, and we inject contrast. We are then able to obtain a good visual of the state of the pancreas and its bile ducts. ERCP procedures are an excellent tool for therapeutic treatments. It allows us to remove stones/sludge, place stents and procure biopsy samples. However, the pancreas is a sensitive organ and easily reacts to invasive probing of the ERCP scope. Patients without a history of pancreatitis are most prone to a post procedure flare of pancreatitis, such is the sensitive nature of the pancreas. ERCP procedures should be performed cautiously and only when less invasive approaches have been explored.
An Endoscopic ultrasound A.K.A EUS is used for diagnostic purposes. However, because EUS procedures have evolved and become very cutting edge, EUS can at times go beyond its diagnostic capabilities and assume some roles of therapeutic treatment. A good example is the Celiac Plexus block, the non narcotic alternative for pain relief. Another example of how the EUS has evolved, is the ability to perform biopsies, if we notice a lesion, without resorting to an ERCP. in addition, stent and stone removal therapies have also evolved. AN EUS carries a very low risk of a post procedure flare and is very well tolerated.
If a patient is requiring repetitive ERCP procedures, I highly recommend considering a more long term solution, such as possible surgical intervention. ERCP procedures are invasive, pose a great risk of an acute flareup and can unwittingly damage more and more of pancreas tissue. This can potentially have a negative consequences when it comes to a successful outcome of surgery. For example: repetitive ERCP procedures can damage Islets of Langhorne cells, lowering the chances of a successful AIT graft.

The Takeaway: ERCP's are primarily for therapeutic interventions, while EUS carries the role of diagnostic purposes, plus some therapeutic treatment. The aim should always be to start with least invasive first.
While ERCP's definitely has a place in the treatment of pancreas disease, It's important for patients to ask: Can this be done through an EUS? Will this procedure do more harm then good? What are the long term effects? Information is power. Research, ask questions and become educated.
Dr Beth Schrope MD. PHD. is an associate professor of clinical surgery at the Pancreas center of Columbia as well as director of the pancreatic cyst surveillance program. Dr Schrope is an active member of the American College of Surgeons, the American Hepato
pancreaticobiliary Association, and Society of Surgery of the Alimentary Tract Dr Schrope is the author of numerous publications in the fields of bariatric surgery, medical ultrasound and GI surgery. Dr Schrope is also the sole editor of a new textbook on Surgical and Interventional Ultrasound. Her research interests include novel applications of autologous pancreatic islet cell transplantation, pancreatic cysts and pancreatitis. Dr Schrope serves as the medical director of the National Pancreas Foundation new York Chapter. Refer to #Resources for contact information.
Question: Patients undergoing surgery are counseled to walk, walk, and walk some more immediately post op. This is not an easy or pleasant feat. Can you share the benefits of walking post op, how it aids in recovery. And the risks of being too sedentary?

Answer: Successful recovery after major pancreatic surgery can be a tough road, especially if you were managing a chronic, debilitating illness before surgery. It is well known that good nutrition is paramount for healing and well-being, but less appreciated is a safe return to physical activity. 
Although it can be difficult, with abdominal incisions and pain and fatigue, walking is the first and best place to start to regain your energy. Ideally you want to walk 30 minutes a day – but it doesn’t have to be all at once! Even three ten minute walks a day are helpful. Walking in your house or hallway may be a good place to start, but feel free to go outside for some fresh air. You may want a companion, at first, until you feel confident and steady on your feet. 
Walking helps increase strength and restore balance, and can actually prevent certain complications such as blood clots. Laying in a hospital bed – or your bed at home for that matter – too much can cause pooling and stasis of blood in your legs, which can lead to dangerous blood clots. Walking helps restore your circulation; even rotating your ankles while in bed or in a chair helps maintain a healthy circulation.
In a study done by the NCBI, post operative ambulatory activities, reduced the patients length of stay. Patient not complying were found to have a longer length of inpatient stay, and reported higher post operative complications. Click here to view the study.

The Takeaway: If your loved ones are urging you to walk and maintain physical activity post op, listen to them. It is hard in the beginning, but it will accelerate your recovery and begin to build back your stamina.

 

*The Pillar would like to spotlight two incredible teen heroes who have taken the monumental step of a TPAIT. @jaylenNoud-BUILTforBattle and @Gracie-CincinnattiStrong You are both an inspiration of grit and endurance! May the rest of your recoveries go smoothly, a beautiful pain free life awaits you on the other side!!*

*I implore all of you to please continue to keep @Rebecca-Rebeccah'sWish in your prayers. the example of true tenacity and perseverance, Rebecca needs the love and mercy from GD. The past few month have been extremely challenging for Rebecca and the Taylor family, yet continue to inspire with there faith and trust. Rebecca, you have an army behind you. Keep fighting.*

*My dear TPAIT sister is undergoing another surgery. Please send positive vibes her way @JennyLorealHudgins-Jones. Thank you.

Sabrina Toledano MS, RD, CSO, CDN has been working with patients in the Pancreas center of Columbia Presbyterian. Sabrina has vast experience and is knowledgeable in counseling patients on how to optimize their nutrition while living with pancreas disease and undergoing pancreas surgery.

Question: Exocrine Pancreas insufficiency is a common and inevitable outcome of pancreas disease. There remains confusion on the diagnosis process of EPI. What is the preferred way to test for EPI? Other then the standard diagnostic process, what other symptom indicators can alert a patient to evaluate and seek treatment for EPI?


Answer: There are three main diagnostic tests to asses Exocrine Pancreas Insufficiency.

The 72 hour quantitative fecal fat stool collection remains the gold standard. This test shows the extent of malabsorption, by comparing total fat in stool output. the limitations of this test require the patient to consume 100 grams of fat daily. for many patients with pancreatitis, this is not realistic. in additions it requires the patient collect stool for 3 days. This is not a pleasant task.

Another diagnostic test is the qualitative fecal fat test. This is a one time stool collection, and a positive result indicates malabsorption. Patients must consume fat, but there is no particular amount of fat to consume. The limitation in this test is, the result is only based on one stool sample. Hence there are many false positives/negatives.

The third test is known as the fecal elastase test. This test is most commonly ordered in the outpatient setting. It is also a one time stool sample and does not require consuming fat. Results less the 200 ug/g indicate insufficiency. Its limitation to this test is that watery stools can cause a false low result. Fecal elastase does not monitor the response to pancreatic enzyme replacement therapy.

Clinical symptoms should guide a patients next step. If patients are experiencing any symptoms of steatorrhea, such as yellow, light colored bowel movement; floating, foul smelling, oily bowel movements; abdominal pain, cramping, foul smelling gas after eating, then pancreatic enzyme therapy should be initiated.
 
The takeaway: There is not only one method to test for EPI. Evaluate your current status of disease, empower yourself with information on these three types of stool tests, so you can make an educated decision on what is the best one for you. In addition, If you have received a negative result, but symptoms show otherwise, you can ask to have the other tests done.
 
  • Hi There, I am Hunter from California. I have Pancreatitis and It means a lot to me to be able to help people and make there lives a little better. I hope you like the gingerbread cookie and stuffing recipe I've made and have a great holidays!

  • Happy holidays Y'all, I'm Kathleen from North Carolina. Part of what I love about cooking is how versatile recipes can be! Adding different herbs can completely change the flavor profile of what may otherwise be a boring side dish. With Mom having T3c diabetes and Dakotah having EPI plus gastroparesis it's good to have a variety of things they can eat available. Enjoy!
Herb Flavored Chicken

Lean animal protein is encouraged for patients on a pancreas friendly diet. This recipe utilizes herbs to add flavor without any addition of fat. lean chicken breast, lean turkey or chicken on bone without the skin are great protein options. Lining the pan with parchment, ensures your protein will not stick to the bottom.

  • Heat oven to 425f.
  • Line a Pyrex pan with parchment paper.
  • Rinse and pat dry Chicken breast or protein of choice
  • In a separate flat plate, place a mix of herbs, like rosemary, thyme, parsley or a ready herb mix, such as Herb De Provence
  • Press both sides of chicken into herbs, ensuring herbs stick wo use of oil.
  • Place chicken in Pyrex and bake 20-25 min
  • Garnish with squeezed lemon or lime.
Lemony White Bean Salad

Legumes are packed with protein and fiber. Legumes also contain properties that promote a friendly microbiome. This White bean salad is light and a nourishing plant based side dish. For easiest digestion, soak beans overnight prior to cooking.



  • Rinse, drain and pat dry your favorite canned beans or soak overnight a package of beans and boil in water until soft.
  • using small amounts of water in place of oil, brown garlic, lemon and Dill in a small saute pan until fragrant
  • Place beans in a salad serving bowl
  • Stir in browned aromatics, mix and serve.

To make this more of a complete meal:
  • Boil cubed potatoes, in season Squash (tri color squash for a beautiful presentation), layer on top of beans.
Roasted Carrots

This dish can be adapted using any of your favorite vegetables such as, cauliflower or mushrooms. Oven roasting is another smart method to prepare food without using any fats in the dish.
See the brilliant hack for tossing veggies, adding flavor, without the use of oils!


  • Using a juicer or a food processor, add plump ripe tomatoes. When the consistency is juice, you can add any spice or herb.
  • In a bowl or a bag, toss veggies of choice with the juice and allow to "marinate"
  • Roast veggies on parchment lined pan at 425, until desired doneness.
  • Reserve any extra juice. store in fridge for future use or pour into ice cube molds, freeze, and you now have a great non fat flavor booster when you need it!
Nonfat Christmas Stuffing

Holiday Is not the same without the traditional stuffing! Hunter absolutely nailed it with this pancreas friendly version of a classic traditional stuffing. No need for the butter or eggs, I have a feeling your guests will love this one!!

*Toast 4 slices of bread in oven for 8 minutes. remove, cut into cubes and toast again or additional 5 minutes until crispy.

*Chop 1 onion and 1-2 carrots and celery stalks and place in a parchment lined Pyrex.

*Combine 1 TSP of garlic powder, onion powder, poultry seasoning and Parsley powder. 1/2 TSP Rosemary, Sage and Thyme 1/4 TSP Salt and crushed black pepper. add to Pyrex.

*Add 1/2 cup of homemade or prepared low fat vegetable broth

*Add toasted, cubed bread and chopped veggies

*Add 1/4 cup Cranberries (optional)

*Bake covered at 350F for 20-30 minutes
Gingerbread cookies

I think we can all agree that the holiday season is not same without the beloved gingerbread cookies. This recipe is pure genius! The Icing is high sugar, so feel free to omit. Its an excellent recipe even without the icing.

*2/3 cups apple sauce
*3/4 cups Brown sugar
*1 tablespoon molasses
*2 Ener-G egg replacer eggs or flax egg
*1 teaspoons vanilla
*3 cups all purpose flour
*1 TSP baking soda
*1/2 teaspoon salt
*1 TBSP ground ginger and Cinnamon
*1/2 TSP Ground Allspice and Clove

Cookie Icing:
*1 and 1/2 cups confectioner sugar

*1/2 teaspoon vanilla extract

*1 teaspoon agave syrup

*1 to 2 tablespoons warm water
*Pinch of salt

Prep the egg replacer. Whip the eggs with a beater until foamy. *Mix all cookie ingredients in bowl and stir in the beaten replacer eggs (or eggs). Scoop and flatten dough into balls on parchment lined sheet pan. Bake 350F for 10-15 min. Let cool.
*Icing: Combine all ingredients to warm water, until desired consistency. Set in fridge and drizzle gingerbread cookies.





Fat free Baked Donuts

The holiday of Hanukkah is based on the miracle of oil. Hanukkah is an eight day oil feast. Swapping out the traditional deep fried Doughnuts seems like a challenge. Lo and behold, this Hanukkah (or the rest of the year) you can have your doughnut and eat it too!

*Flax egg mixed and left to thicken (3 TBSP water, 1 TBSP flax meal)
*2 TBSP maple syrup
*2 TBSP apple sauce
*1 cup reduced or fat free milk of choice
*1 cup flour
*2 TSP baking powder
*1/4 TSP salt
*1/4 coconut sugar
*1/2 TSP cinnamon
*1 TSP vanilla
*nutmeg, pumpkin pie spice, apple pie spice to taste

Heat oven to 350F
Prep the flax egg, mix flax meal with water and allow a few minutes to thicken

Combine the rest of the wet ingredients with the flax egg and mix to combine

separately combine the dry ingredients and fold into wet
spoon into silicon donut molds

Bake for 10 minutes or until a toothpick comes out clean

Allow to rest and pop out the doughnuts
Flavor Variations: add fat free add ins to create various flavors. grated carrots, grated apples, dried fruit etc...
Topping variations: reduced whip, coconut cinnamon sugar, grated fruit zest etc..
‌


Dr Maisam A. Abu-El-Haija, MD,MS was inspired to pursue her career in pediatrics, knowing that their growth and health are so essential. As a Gastroenterologist, Dr Haija specializes in pediatric pancreas disease, growth, nutrition and general GI related diseases.
Dr Haija has won many awards, including the clinical care achievement award from Cincinnati Children's. Her research is focused on Acute Pancreatitis, predictive models for severe pancreas disease, resulting outcome of Diabetes, Chronic Pancreatitis and Total Pancreatectomy Auto Islet Transplant.
In her free time, Dr Haija enjoys to travel and explore new beaches. Her hobbies include exercise, outdoor activities and cooking new recipes with her two children.
Question: It is well known among patients, that as disease progresses, the pancreas begins to "burn out". The outcome is that the official key indicator, enzyme levels, do not rise anymore. Can you expound more on the process more on the "burn out" process? What are some steps caregivers can take when lab results show negative markers, but symptom prove otherwise?

Answer: In an attempt to understand the "burnout" process, we need to delve deeper into the mechanisms of the pancreas.
The pancreas is consists of various tissue cells that carry out different functions. The role of the Acinar cells are, to secrete digestive enzymes, namely lipase, protease and Amylase, that break down our fats, proteins and starches. One of the possible pathways of Pancreas disease, is that the secreted enzymes may activate prematurely. or that the pancreas does not have the capacity to deactivate them. With prolonged inflammation (chronic phase), the pancreas tissue slowly die and Acinar cells get replaced by scarring.
In cases of Acute Pancreatitis, the pancreas is inflamed, and the Acinar cells overproduce, causing Lipase levels to elevate abnormally. In cases of chronic pancreatitis, when in a diseased state of Exocrine Insufficiency, much of the Acinar cells have lost function already. This is the "burnout" disease state. The pancreas is inflamed, atrophied and diseased, causing great pain. The enzyme levels however, are unable to rise anymore.
It is critical that patients should be under a knowledgeable care team that understands this disease course. I highly recommend timely follow ups including imaging and labs. I suggest asking the patients team for a letter explaining this disease and contact information, that can be presented in the ER. To address this problem, Click here to see this wonderful initiative created by the NASPGHAN committee in collaboration with the NPF, Mission: Cure and Rebecca's Wish.

The Takeaway: It is troubling, that clinical markers may not indicate disease, yet disease is there and treatment is warranted. Build and maintain strong relationships with the care team. Have an open discussion. Be proactive and request a plan be put in place in the event you find yourself in this situation. Be well!










MS. E. Angela Heller is currently the social worker in oncology department at New York Presbyterian Hospital/Columbia medical center. She has presented extensively at national and international symposiums on subjects like palliative care, Mesothelioma, narrative medicine and emotional aspect of Ostomy care and team building. Angela holds a social work degree from Indiana University, and has been employed By Columbia's medical, surgical and outpatient oncology unit for 34 years, as part of the interdisciplinary team that addresses the emotional needs of cancer patients and their caregivers. She created a peer to peer program for woman at risk breast cancer program. in addition, she facilitates bereavement, pancreatic cancer and breast cancer support group. Most notably, Angele facilitates the first ever Pancreatitis psychosocial support group In New York.
If you would like to join the support group refer to #Resources for contact information.
COPING WITH PANCREATITIS DURING THE HOLIDAYS
“The joyful season”. Yes, as children this is usually how we anticipate and view the
upcoming holidays. But as we grow into adulthood, responsibilities and demands,
both financial and familial, and other stressors inevitably come with the holidays.
Add to this a diagnosis of pancreatitis.
Food and the holidays are so intricately linked and therein lies the dilemma. As I
have learned in the past year as the Social Worker facilitating the pancreatitis
support group here at the New York Presbyterian Hospital/Columbia University
Medical Center, dietary issues and gastric discomfort can be persistent concerns
with this diagnosis. Add to that the emotional investment we all have in
celebrating traditions through preparation, presentation and enjoyment of foods
that are so often the worst possible options for those coping with pancreatitis.
How do you navigate through these potential pitfalls? All of you have developed strategies to cope. Here are a few that I have picked up along the way in my interactions with the pancreas team and our patients.
  • Know what works for you. For most of you, this is not your first rodeo”! You eat every day so you know the foods you can and cannot tolerate.

  • Watch for hidden fats in holiday foods. If you take pancreatic enzymes you may need to adjust your dose during holiday meals. Touch base with your Registered Dietician to discuss spacing time and dosage.

  • Although you do not need pancreatic enzymes to digest alcohol, beware of mixed drinks that may contain eggs or cream.
  • Be prepared for the “curious”. If you find yourself at a gathering and encounter an individual who “puts you on the spot” and questions you about your dietary choices, pivot away from giving personal information and gracefully introduce another subject. In a future article I will go more fully into techniques for changing the subject to spare uncomfortable social interactions but briefly I suggest answering “ I’m on a special diet “and changing quickly to a different subject Ask the questioner about their outfit, holiday plans, comment on the festive atmosphere. etc, etc. You get the picture. I think of it as being like Teflon. Let it slide off. Don’t let the focus be on your specific and personal dietary needs.

Although sharing food is one of the central aspects of holiday celebrations, gathering to catch up and celebrate with loved ones, listen to music, watch holiday movies, decorate together, exchange gifts, play games and many other traditions are also equally enjoyable.

This year with COVID 19 in our midst the holidays will be different. Gatherings will be smaller than in past years. Celebrations will be cancelled due to transportation risks. Nonetheless, keep the focus on your wellbeing.
You know what works for you. Enjoy and have a Happy Holidays!
The sobering reality of the altered digestive tract following a TPAIT. The pancreas is removed, together with gallbladder, duodenum, spleen and small portion of the stomach. A roux En Y is the anastomosis usually performed to reconstruct the tract. Patients face an irreversible altered digestive tract. Indigestion and other GI upsets remain symptoms that effect Post TPAIT day to day life.
  • Having your care followed by a pancreas specialist is highly encouraged. To find a center by state please visit the NPF website for a list categorized by location. Please visit Please note: this list is currently in the process of being revised.

  • Telehealth medicine means you can consult with The Pancreas center of Columbia, cross country. If you would like an appointment with GI Pancreas specialist Dr John Poneros Please Email or Call (1212)305-4795

  • If you would like to have a surgical consult with Dr Beth Schrope Please Email or call
(1212)305-9441
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