CareClinic App

The CareClinic App Team contacted me about sharing information about their app to help manage general health and medical conditions. I will let their guest post delve deeper into the app but I wanted to share my thoughts on the app first.


Disclaimer: There are several apps available to manage health and medical conditions, I do not use any of them so I do not have a personal opinion on CareClinic versus another app. This blog post is simply to provide information on an available tool for health management.

I didn't realize at the time that this app is not only for those with health conditions but also for anyone in general even if there is no history of health issues. This is a nice feature for organizing one's health goals and plans to reach identified health goals in addition to medical conditions.

I like that there is the option for desktop login as well as via smart phone. I signed up for the free membership and to my surprise both of my rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome - were in the drop down menu for possible health conditions to select. That alone was impressive.

There is a tutorial for creating your self-care plan as well as templates one can use. Care plans can be created for a multitude of purposes including physical and mental health. Care plans allow you to add your medications, planned therapies, activities, and nutritional intake on a calendar with reminders.

Reports can be viewed showing tracked adherence, symptoms, calories, activities, weight, therapies, sleep and custom values with any correlations found in the data tracked.
Below is a full list of the features in CareClinic with descriptions.




CareClinic Features

This is a guest post by the CareClinic App Team

It is often evident that during times of the constant fast-paced lifestyle, we’re glued to our smartphones without the awareness or presence of mind for our own wellbeing. Often forgetting that there are options for the betterment of our own health. Given the current climate we’re living in right now, it is only more prevalent that a smartphone can be beneficial in providing access to platforms for improving lifestyle and wellbeing. One such app that enables this is CareClinic.

All Inclusive Solution

CareClinic.io is an all in one care management platform, that provides more than just the features of a standard health tracker. Here is a platform that empowers users in managing their acute, chronic and preventive medical care in one fully integrated online-to-offline system; such that for the user benefits of tracking, measuring and behavioral insights.

 The platform is offered on desktop, tablet and mobile for iOS and Android; with a free membership option and a premium membership option for additional added features and insights. Upon signing up to the platform users are assigned a user ID (for data privacy protection) with full level of encryption and allowing users ample options to save their health information in a structured way, so the information may be used to generate personal qualitative insights for their convenience.

Features

CareClinic’s features allow users the opportunity of utilizing the health journal app functionality to share notes or write down day-to-day health or chronic conditions in one place at any time. With the capabilities of tracking prescription medications, over the counter medications, pills, supplements, symptoms and mood tracking along with day to day lifestyle habits, physical activities, nutrition, therapies, vitals and custom values as a personal log and journal as their personal care plans.

The platform provides users with a way to automatically integrate health data to not have to enter activity details manually each time. From the internal database, users can search and assess the medical library (clinically sourced and referenced) and update their care plan at their convenience.

Users may add contacts to their care team to monitor their progress. This feature enables them to get reminders of any missed dosage to follow up or keep track of their wellbeing. This functionality is great for seniors or geriatrics, or those who may rely on care providers (be it a guardian, family member or personal care support); as for doctors, nurses, and even family. Not only does the platform benefit users, but it assists clinical and healthcare providers, providing them oversight of a user’s care plan and journals for better oversight.

The platform helps users track health measurements that are vital to themselves, their family or their care provider with ease. The benefit of generating reports, provides context on progress to help optimize lifestyle goals. The user information can be assessed and analyzed to provide availability of charts, logs, and correlations all of which can be useful in better understanding with deeper insights. To learn more about CareClinic and how it can help you or a loved one, please visit https://CareClinic.io to download the App for Android or iOS.

Managing Diarrhea Through Diet

Diarrhea is a common complaint of those with GI issues and diet can play a role in worsening or lessening this symptom. Registered Dietitians (RD) offer a valuable service to anyone wanting to improve their health or manage a disease through diet. I've worked with several RDs during the course of my career in the medical field and also privately sought weekly appointments with a RD to teach me and my now ex-husband about the diabetic diet to help my husband at the time manage his Diabetes appropriately.


I visited with one of the RDs I work with about tips to help lessen diarrhea and upset stomach for those with GI issues. She advised the following:

• Avoid or Limit: Fatty, Fried, and Spicy Foods
• High fat foods slow stomach emptying and cause the digestive system to work overtime which can cause nausea, bloating and stomach pain and harm healthy gut bacteria and increase unhealthy gut bacteria. Fatty foods are broken down to fatty acids causing the intestine to release fluid, resulting in diarrhea. 
•  Greasy foods are high in fat and not healthy fats that are found in foods such as avocados, fish, extra virgin olive oil and butter
• If you're eating a lot of protein, switch to lean meat choices rather than those with higher fat content and cook your meat by baking, broiling, or steaming rather than higher-fat methods such as frying
• Spicy foods contain capsaicin, an irritant to the body, which irritates the lining of the stomach and intestines thereby creating a laxative effect in order to quickly remove the capsaicin irritant
• Eating spicy food with some dairy can help reduce or neutralize the effect of capsaicin on the digestive system
• Be mindful of your fiber intake and sources:
• Soluble Fiber helps to bulk the stool by absorbing water and slow digestion
• Soluble fiber sources include white breads, rice, potatoes, dried beans, oats, oat bran, barley, citrus fruits, apples, strawberries and peas
• Insoluble Fiber adds bulk to the stool and helps food pass through more quickly through the GI tract
• Insoluble fiber sources include wheat bran, whole grains, cereals, seeds, and the skins of many fruits and vegetables
• Small frequent meals throughout the day are easier to digest than 2-3 large meals
• Limit sugar intake, especially artificial sweeteners
• Sugar stimulates the release of water and electrolytes in the gut resulting in diarrhea
• FODMAPs include fructose, artificial sweeteners, and lactose that are a poorly digested sugars
• Limit caffeine as it stimulates the intestines resulting in increased bowel movements or diarrhea
• Caffeine is found in coffee, tea, chocolate, most sodas as well as coffee and chocolate flavorings

Gluten can cause diarrhea, and other bothersome symptoms, for someone who is gluten-sensitive as gluten causes inflammation in the small intestine for these individuals.


 Additional diet information regarding managing diarrhea may be found at International Foundation for Gastrointestinal Disorders.


I heard through Familial Adenomatous Polyposis groups several individuals reporting improved GI symptoms by following the Anti-Inflammatory Diet as well. The idea is to avoid foods that may trigger or worsen inflammation in the body as some foods or ingredients have this effect on the body. In 2014, I participated in a health study and followed this diet with noticeable improvement to my GI symptoms. You can read about my experience with the diet here.


Every person is different and while some foods may be more upsetting than others to one person versus another, these are some general recommendations that may be helpful. Always consult your physician and consider enlisting the help of a Registered Dietitian in your area for personalized care and recommendations.

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.

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
• Start by searching for genetic counselors through this directory:
• NSGC Genetic Counselor Directory 
• 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:
• Hospitals/Health Centers
• Community Centers
• Cancer Support Community
• 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!

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.