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.

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.

Vitamin D Deficiency

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.

Balancing Chronic Illness and Socializing

Belongingness is a hierarchical, psychological need and socializing is an important part of that for everyone regardless of health. But that doesn't mean we have to be in a near constant state of socializing with others, does it?

I'm a bit of an introvert myself so I need time to myself to recharge after extensive socialization and on top of that, I don't feel well a lot of the time due to my chronic illness. Additionally, in order to support myself my priority is maintaining full time employment. To do so, this requires my constant attention to my health needs so that I may recover from the last week of work so that I may work the next week. It is an ever-present cycle of care that I must balance and protect for my livelihood.


My work as a social worker involves talking to chronically ill patients all day long 5 days a week. Between providing care to my patients and maintaining my relationships with my co-workers, I'm often exhausted upon my return home and I don't necessarily want to socialize with anyone else. I want to recover from the day. I am emotionally and physically drained by this near daily ritual that is employment. And if I am going to socialize on most days, I prefer messaging versus verbal communication except on rare occasions and of course during in-person interactions. I'm also not one for spontaneous social activities - I like to plan ahead so that I may prepare myself to be able to attend and participate as well as I possibly can. The unpredictable nature of chronic illness does not always allow for activities or socialization even with the best intentioned plans.


Balancing a social life and chronic illness is a common struggle. Too little socialization fosters isolation and depression but too much socialization drains us of our reserves to maintain our physical health. We often pay the following day or days after extending ourselves beyond our physical limits. An occurrence we often push ourselves to do on particularly good health days as we want to leave our homes, our routines, and rejoin the world and our loved ones in activity and socialization. Thus, it is far too easy to isolate ourselves away but then the double edge sword of trying to protect our physical health can also cause damage to our mental health at the same time. Maintaining friendships amidst chronic illness can be quite the challenge as well.


My best relationships with others, platonic or romantic, are those with individuals who not only take an interest in understanding and respecting my daily health struggles but also do not take my at times lack of presence personally. I don't require nor desire constant communication and because of my health, I am not always the most reliable for being able to keep scheduled activities. Even if that activity may be a friend coming to my home while I lie in bed in my pjs, that doesn't mean I will physically feel up to a visit even in the most conducive of situations for my health. Sometimes I feel more comfortable being along than in the presence of others.


Nevertheless, in spite of all the challenges and personal preferences, socialization is important for our well-being. Fortunately, with today's technology it is easier and faster to be able to communicate with others than it has ever been before. In person socialization can't be replaced but we can still develop meaningful, deep friendships with others through the phone and social media. We can receive and give comfort to others through these interactions as well. It may not be the same as the physical touch and care of another but it is not something to be dismissed either. Regardless the format, we must continually strive to balance our social needs and our health needs for the best outcomes for ourselves.

Keeping it Simple

A few years ago I underwent an intensive transformative time as I was separating from the love of my life and in the midst of this heart wrenching, soul destroying period I was also losing others in my life I hadn't expected.


It was at this time that I wrote the following revelations in Let the Fire Burn :

"No longer care what others think of you. When you lose respect for someone, that person's opinion no longer means anything anyway. Don't waste yourself on those who have already lost your respect. Cherish those who are true to you - those who are supportive, loving, caring, and there with you through the brightest and darkest times of your life - not those who try to create dark times, tear you down, harm you with their malicious intent and manipulations, leave you without explanation. Don't let yourself succumb to the power of others, especially when it is a harmful power. You don't have time for that nor should you.

Don't take the dangerous, personal issues of others on as your own. People will attempt and succeed at betraying, manipulating, deceiving, and harming you. The reasons for others to inflict such pain on another is deep seated within them. Stop trying to decipher the reasons behind their actions. Their reasons don't need to make sense. Their reasons are just that, theirs. Not yours. Do not take on more pain simply because another is engaging in harmful behavior towards you."

That year I learned a multitude of lessons, none of which were easy. Not only was I having to cut ties with others of my choosing but I also had others choose to cut their ties with me. I felt abandoned and betrayed by those I held close for so many years, individuals who I had bared my soul to. It had all been in vain. It didn't matter how much I had cherished individuals in my life, nothing could stop what was being set in motion.


And so while in my own depths of depression, I had to learn to let go. Letting go didn't come easy to me but at some point that changed. Instead of holding onto feelings of abandonment and betrayal, I focused on the freedom from drama. My life was chaotic enough as it was, I certainly didn't need added drama. I stepped away and allowed others to do the same and when I accepted that I was able to let go of the stress caused by others.

Nowadays I keep my circle tight. Outside of work, there are few who I deeply engage myself with. It's not anything against others, it's a matter of simplification. With fewer people, there is less stress and mess. Those I remain close to also accept that I may not talk or visit them for long stretches of time. We both know though that the other is just a call away if one of us is needed for anything. We don't take things personally with each other and we don't create drama for the other. These are deep, meaningful yet simple friendships that sustain us. These are the type of friendships I not only want but also need.

It's okay to take a step away from someone or something. Sometimes it is necessary for our mental health. Learning to step away has taught me not to take the actions of others personally even if it was meant to be personal. It no longer matters. What does matter is self care and happiness. These are things that are within our own hands and others cannot take it away from us without our permission. I stopped giving my power over to others and I've never looked back.

Anemias and Bowel Disorders

Anemia is a common disorder for those of us without a colon, particularly if we are also missing a part of our small intestine.
Anemia occurs when a person doesn't have enough healthy red blood cells to carry adequate oxyen throughout the body. This condition can cause:

• Fatigue
• Weakness
• Pale or yellowish skin
• Irregular heartbeats
• Shortness of breath
• Dizziness or lightheadedness
• Chest pain
• Cold hands and feet
• Headaches

It's important to catch anemia early as the symptoms can worsen with prolonged anemia and there are increased risks to the heart. There are two types of anemia common for those with bowel disorders:

• Iron Deficiency Anemia

This occurs when there is a deficiency of iron. This lack of iron makes it difficult for the hemoglobin to be produced which enables red blood cells to carry oxygen. In addition to the common symptoms of anemia, a person may also experience:

• Inflammation or soreness of the tongue
• Brittle nails
• Unusual cravings such as ice, dirt or starch
• Poor appetite

For those with GI issues, simply increasing food intake of iron rich foods is not typically enough to correct the iron deficiency anemia. Iron pills and iron infusions are common to help manage iron deficiency anemia. Iron pills can be Ferrous Sulfate, Ferrous Fumarate, or Ferrous Gluconate with the latter being easier on the stomach than the former. Vitamin C (250 mg daily) can also help with iron absorption. It is important not to drink tea within two hours of taking iron supplements as the tannins in tea can interfere with iron absorption. It's important to consult your doctor regarding how much iron to take as at high doses iron is toxic.


Try incorporating these iron rich foods into your diet:

• Red meat, pork, poultry
• Seafood
• Beans, lentils and peas
• Dark green leafy vegetables
• Dried fruit
• Iron fortified cereals, breads and pasta

• Vitamin Deficiency Anemia

This occurs when the body doesn't have enough Folate, Vitamin B12 and Vitamin C that's needed to produce enough healthy red blood cells. This also is called Megalobalstic Anemias.

In addition to the common symptoms of anemia, Vitamin Deficiency Anemia can also cause:

• Weight loss
• Numbness or tingling in hands and feet
• Unsteady movements
• Personality changes
• Mental confusion or forgetfulness

It is common for those with bowel disorders to also be low on folate and Vitamin B12.


Folate is also known as B9 and is found in fruits, leafy green vegetables, nuts, and enriched grain products. Folate can also be taken as a supplement, commonly in a daily multi-vitamin.


Vitamin B12 is found in meat, shellfish, eggs, and dairy products and can be taken via an injection, oral solution or in a pill form. Cyanocobalamin is the synthetic form of Vitamin B12. Vitamin B12 also needs to be monitored as too high of a level can cause inflammation to occur.


Vitamin C can be found in broccoli, citrus fruits, strawberries, sweet peppers and tomatoes and can help with the absorption of iron.


To help manage both my iron and vitamin deficiency anemias, I take several medications:

• Ferrous Gluconate 28 mg from Puritan Pride - I take 2 pills every time I eat something but I allow a 2 hour window between consumption of tea and these pills
• B12 Microlozenge 5000 mcg from Purtain Pride - I take one pill three times a week. I take the microlozenge with food and let it melt under my tongue before swallowing for best results. I've found that if I chew it and don't take it with food then it isn't absorbed and taking it three times a week helps keep my B12 level below an inflammation level.
• Vitamin C - I cut a 500 mg tablet in half so that I'm taking the recommended 250 mg a day to help with iron absorption and thereby stretching my supply of Vitamin C. I found that 250 mg tablets are more expensive than the 500 mg tablets.
• Multi Vitamin with Folate - I take one daily to help maintain my folate level.

For your best functioning, it's a good idea to have your doctor monitor your iron levels and vitamin levels to determine if you are low on any levels and to develop a plan to treat any deficiencies. 

No, My Food Choices Aren't The Problem

I have a long history of chronic pain caused by eating and no, it isn't my food choices that are the culprit. I appreciate others being concerned about my well-being but unsought advice gets to be tiresome, particularly when I've been dealing with my health issues since I was 9 and the particular issue of pain when I eat since I was 15. I think I have a good understanding of my own health issues and symptoms.


A lot of people are quick to tell me "It's what you ate", "You shouldn't eat so much" or "You have an allergy, try this diet". I have been tested for food allergies and intolerances, they were all negative. And the pain happens with everything I eat and even a gulp of water is enough to cause excruciating pain and stomach cramps at times. The only things that sometimes don't cause me pain are saltines, tamales, and Arby's Roast Beef Sandwiches and even then I'm sure if I ate enough of them, they would cause pain too. Sure, over eating causes me pain but the pain is just worsened by quantity. Even small meals or snacks cause me pain and discomfort. Reducing my intake of filling foods such as pasta, rice, and bread do help to reduce my pain but I still have pain regardless. I have some level of discomfort with everything I eat - it just varies on severity. And there are times that I can eat something and have one level of pain and eat it again the next day and the pain level is something different.


I started experiencing excruciating pain every time I ate after I had my ostomy reversed via a straight pull thru. I required another surgery within a year to remove adhesions that were causing a stricture of my small intestine. It took several years after this last surgery in 2002 before my body was better able to tolerate food. The pain never fully went away although it did significantly lessen - that is until 2015. With my hospitalization in 2015, I started having chronic pain and nausea when I eat and the nausea occurs sporadically throughout the day and night as well. Additionally, my adhesions now cause me a higher risk of intestinal blockage and now I'm unable to eat raw or undercooked vegetables or I will have a blockage. This makes it harder to eat light, healthy foods in an attempt to further reduce my pain.


Since 2015, I've undergone various procedures and tests and the conclusion is that my chronic pain and nausea are a result of my adhesions worsening again. They're just not to the point of requiring surgery. During a period of testing in 2017, it was discovered that I had C-Diff and that was the cause of worsening my GI symptoms as my stomach and intestine were inflamed and irritated from the infection that was wreaking havoc on my body. I remember during this time I was being told by others to "try this diet, you have food allergies". I held off from trying the diets these individuals suggested because I wanted to give all the testing I was completing a chance to identify a source and for treatments to be tried before I changed my diet. I'm glad I didn't jump on the diet bandwagon as it turned out my weight loss and severe pain were actually due to the infection I didn't realize I had.


I'm glad to hear that certain diets have really helped others and I wish everyone the best of luck but a diet isn't always the answer for everyone's health issues. It certainly isn't the answer for my symptoms.

Why I'm Grateful I Didn't Become a Mother

For the majority of my life I planned on having a child and I was going to do what was necessary to have a child and end the cycle of Familial Adenomatous Polyposis (FAP) in my family with me so that I wouldn't pass it on to my child. I had a surrogate ready and willing and we were saving for the IVF that would be necessary as well as the egg selection to prohibit utilizing my eggs that had the FAP gene. However, I never felt quite ready to take the plunge and start the IVF process. The timing seemed off but the longer I procrastinated, the older I, my husband and my surrogate became nearing the age that pregnancy may not be recommended. I also was heavily concerned with the risk of pregnancy complications to my surrogate and if necessary, how the restrictive abortion laws of our state would affect her if she required to terminate the pregnancy in order to protect her health and life. I couldn't bear the thought of being the cause of harm or death to her when she was doing me a favor by agreeing to be my surrogate. After a lot of deliberation, I came to the conclusion that it would be better that we forego attempting to have a child and so I said goodbye to that dream. It was a heart wrenching decision that took a long time to fully process and accept. It was a difficult decision but I knew in my heart, it was the right decision for me.

And then a year later, my life changed and I was divorced. I not only was grieving the loss of my marriage but I was also re-grieving the loss of my dream to have a child. Even though I had decided to forego becoming a mother, with the divorce I was forced to fully let go of that dream unless something once again drastically changed in my life. If I were to become a mother, I would either have to make the conscious decision to attempt IVF with a donor or another life partner, adopt a child, or become attached to a life partner who already had a child.

In spite of all my dreams to become a mother, I am grateful that I am not a mother though. Deciding to become a single mother would not be an easy task and not one that I could easily financially afford either.  It would be a difficult life on my own as a single mother, financially and physically, and I still would face the struggles of living with chronic illness and caring for a child as before but now I would be on my own doing so. Finding a life partner with a child already is a real possibility as it is hard to find someone around my age who doesn't have a child or children.

I've also become accustomed to my life as it is and as much as I previously wanted a child, I don't feel as though I'm missing out. I'm still able to enjoy the company of the children who are in my life and I'm able to do so without the stress and financial burden of raising a child. It is a well working system actually. I'm able to engage these children in fun and exciting activities when I'm able to do so and if I'm sick that day, I simply need to tell their parents so. I've also been blessed with these children being understanding and supportive when I am feeling ill.

The decision to not have a child is not necessarily an easy decision and it takes time to process. It was a long road to travel but ultimately I am content with my decisions and where my life is now. It has been helpful in my acceptance to acknowledge the realities of the struggles I would be presented with in my situation as well as the good things that make up my life. I've discovered it is possible to live happily childless even though that was not my initial plan. I have made peace with my life decisions and it has helped me to appreciate my life just how it is.

A Tribute to My Ex Husband

I don't regret my decision to divorce my now ex husband even though I wish our marriage had worked. But sometimes there is pain we can't overcome or it's not in our best interest to remain in a particular relationship. That was sadly the case for my marriage but I remain grateful for him. Too often we focus on our heartache and pain, forgetting what was good and what remains positive in spite of it all. Today I want to give credit where credit is due.


He is a kind man with an astounding heart. He is always there for a friend or family member in need. He works hard and cares about those around him. He was everything I was looking for in a partner. He did his best to always give me what I wanted or needed in our relationship. He listened to me and supported me, he provided me care when I was ill.

My ex husband and I are not friends, per say. I don't know what we are exactly. But I do know that if I need him, he's always there for me - from our 1st date to years after our divorce. We made a promise to each other when we separated that we would remain there for one another and he has kept his promise thus far.



Us with Zia and Ruhle

When we were together, we adopted two dogs - Ruhle and Zia. We loved them both dearly and they were extremely attached to both of us. When we separated, I took the dogs with me. I think he realized how much I needed them or maybe he's just that kind of a person. A couple months ago, our 1st dog to adopt together, Ruhle, suddenly passed away while staying with my ex husband while I was on vacation. He took care of everything for me with Ruhle's passing and we mourned together. Since then, I've adopted another dog to keep Zia company. They unexpectedly escaped my yard recently and I called my ex husband to let him know. I didn't expect him to do anything but I wanted him to particularly know about Zia missing. He was willing to drop everything at work and come help me find the dogs. Thankfully, they came home eventually.

He does more than just help me with the dogs too. If I need help with a home project, he will take care of it for me if I ask him. He works long hours but if I need him, he's there - whatever it may be, even if I just need to talk. He's always been like that.

I always say it's a shame what happened to our marriage. He was loyal and loved me deeply. He gave me everything I wanted and he was everything I wanted in a life partner. We were a perfect match. Like any couple, we both did things to hurt each other that we regret but we loved each other with all our hearts. Unfortunately, he made some life decisions that broke my trust and I couldn't recover from it. But I will always give him credit for all the good that he embodies. I have forgiven him and am not bitter toward him. He remains near perfect in my eyes. He is a good person and in spite of our divorce, I can't imagine my life without him in it in one way or another. We may never be friends again but we'll always be there for one another.

Reviewing FAP Monitoring and Testing Results

Currently my GI doctor completes upper and lower scopes of my GI tract to monitor my Familial Adenomatous Polyposis (FAP) every two years. In 2015, I started developing duodenal polyps that were precancerous adenoma polyps caused by my FAP and fundic gland polyps in my stomach. I have an intestinal ulcer above my reversal connection site in my small intestine as well that requires monitoring.

Duodenal polyps are a particular concern for those with FAP as FAP polyps often continue to reoccur in spite of removal. I was ecstatic to hear that there were no duodenal polyps present during this scope. These polyps are precancerous and will turn cancerous eventually. The duodenum area for polyp development is concerning due to the risk of requiring a Whipple procedure. No one wants this high risk surgery that results in the removal of the head of the pancreas, the duodenum, gall bladder and the bile duct. My mother required this surgery and it was a very long, difficult recovery for her that nearly cost her life in return and led to the development of diabetes. Additionally, abdominal surgery such as the Whipple, increases the risk of developing a Desmoid Tumor - which FAP patients are already at a higher risk for Desmoids.

I have had several sessile, fundic gland polyps for a few years now. There are several and they are small and in the upper portion of the stomach and are usually benign. However, according to Mayo Clinic, when fundic gland polyps are associated with FAP, they can become cancerous. Sessile polyps are flat, broad based and also considered to be precancerous. Stomach polyps can also cause symptoms of nausea, tenderness, anemia, and blood in stools. These polyps may very well play a contributing factor to my chronic nausea that I started experiencing in 2015. The use of Proton Pump Inhibitors to reduce stomach acid also increases the risk of developing these polyps. I require Prilosec to help reduce my acid reflux and it also seems to help my intestinal ulcer.

I asked my GI specialist if I should change to a different stomach acid controlling medication to further help heal my intestinal ulcer. He advised me that medications, such as Prilosec, focus primarily on the stomach acid and don't really treat intestinal ulcers. My ulcers decreased from 4 to 1 since taking Prilosec yet I'm unable to fully heal my remaining ulcer. This is particularly a concern for me as my ulcer created a hole in my intestine when I was in high school. I went several years later without taking any medication for the stomach acid and without the medicine my one stable ulcer developed into 4 bleeding ulcers. I have to be mindful of my ulcer as it often bleeds to this day, especially when I take Lonox/Lomotil to slow my bowel or if I do not use the restroom for long periods of time. My ulcer actually bleeds less if I use the restroom frequently. My doctor said for an intestinal ulcer that is near the anus, then a suppository or an enema can be used to help treat the ulcer. I am not able to tolerate anything inserted into my anus and therefore this was not an option I could entertain. After my scope was completed, my doctor advised that these would not be a viable option for me regardless as the ulcer is higher in my intestine, above my connection site than he previously realized and it is too high up to be able to be treated with such methods.

Overall my scope results were positive - no duodenal polyps this time, my fundic gland polyps that were biopsied were benign, and my ulcer was stable and also tested negative for Crohn's Disease and cancer.


I go back for a regular check up in 6 months and I will continue my efforts to maintain my health as I await my next set of scopes.

Birthday Struggles

My birthday is a bit of an emotional roller coaster at times for me and has become increasingly difficult for me to enjoy as the years pass by. I shared earlier this year about how my birthday and New Year's start a period of mourning as my fears about the future are intensified. Over time, birthdays have changed from a triumph of survival to a period of mourning.


Often individuals enjoy taking off from work on their birthdays as a way to celebrate. I prefer to work on my birthday so that I can be surrounded by coworkers and celebrate with them versus being home alone on my birthday. This got me thinking and I realized that even as a child, I felt that my birthday wasn't anything special - it was insignificant - which led me to feel that I too was insignificant. I didn't deserve anything significant to occur on my birthday and it was significant when someone remembered to wish me a happy birthday. As the mourning of my birthday years worsens with time, I particularly do not want to be home alone allowing myself to wallow in my mourning.


Since I entered a brief period of depression surrounding my birthday last year, I expected the same to occur this year. I was pleasantly surprised with myself when this didn't occur - at least to the depth of last year's birthday. I struggled in the morning with feelings of sadness and even welled up with tears at times but I was able to fight off the tears and turn the day around by the afternoon. I pushed away my fears about the uncertainty of the future and instead I enjoyed my the birthday lunch my coworkers provided me and appreciated all the birthday wishes from loved ones and even strangers online. I thought I would be in an emotionally fragile state once I got home and asked a friend to spend some time with me. But once again, I surprised myself and was comfortable in my alone time.


Although the sadness I tend to experience around my birthday lessened significantly, I also didn't experience a surge of triumphant feelings about survival either. And that's okay. I was content with a lessening in sadness allowing me to more greatly enjoy sharing my birthday with my loved ones.


Whatever holidays serve has painful reminders to you, may the next be easier. Sometimes our fears and mourning never fully dissipate but they can lessen and we can still enjoy the good times, particularly with others. It can help to utilize coping tools to reframe our negative thoughts to allow us a reprieve.


Here's to an even better birthday next year.

5 Steps to Take When Coping with Grief and Chronic Illness

This is a Guest Post by Elise

There are good days and there are bad days when dealing with a chronic illness. The fact is that you just don't know what will happen tomorrow, or even an hour from now. But, having a chronic illness or losing a friend to one does not mean there is nothing you can do to manage the pain and grief. "Manage" is the key word. How do you manage your grief?

What is Grief?

Grief is a natural emotional response to loss, brought on by loss. Small or significant, it is okay to grieve and for most people the more significant the loss the more intense your grief. How you grieve and how long is up to who you are. Factors such as your personality, life experiences, faith and your coping mechanisms all play a role.

How to Cope with Grief

Coping with grief can be difficult, so here are five first steps to take when you have a chronic illness or are dealing with the loss of a friend who you've lost from a chronic illness.

• Express your Feelings

If you don't express your feelings, you are bottling those feelings in and possibly doing yourself an injustice. This doesn't mean you need to cry on the shoulder of a stranger when sad or yell at your colleagues when angry, but, it is okay to tell a friend, family member, or coworker ho you are feeling, that you need the comfort of someone near you, or to be left alone for some time.

• Take Care of Your Health

Turning away from your health could mean no longer exercising, eating poorly, or losing routine in your life. Both physical and mental health can be at risk during your grieving process, so taking time to focus on your health is important. One way to start is by creating a nighttime routine such as a bath or shower, prepping your clothes for the next day and reading a book to fall asleep. Adding small things such as essential oils, calming music or even adding breathing and meditation to your routine are great ways to relax your body and mind.

• Understand the Inevitability of Bad Days

Bad days are going to happen. You may wake from a restless night, be plagued with difficult thoughts, or you're just having a bad day. All of these are legitimate, and when grieving you will inevitably have difficult days. Understanding that these days will occur will not make your grief fall to the wayside, but you will know that tomorrow may be better.

• Don't Forget - Moving on Doesn't Mean You Must Forget

A common myth about grief is that if you try to move on you must forget. If you lost a friend, it means you should put thoughts of that friend aside. If you are coping with a chronic illness this might mean you should forget the good times before your illness. This simply is not true. There is room in us to both manage the grief as well as remember our loss.

• Seek out Support

Support groups, therapy and confiding in someone you trust are not easy to do for many people. When you grieve these can be even more difficult. However, knowing that support is available to you is important. Understanding that you are not the only one (often the case when grieving) can be encouraging and help you cope with your emotions and pain.

Grief will affect everyone at some point in their life, but when dealing with a chronic disease, yours or that of a loved one, your grief can take longer to manage. However, it is important to know that there are coping solutions to help you keep yourself moving forward.

Elise is a freelance writer located in North Carolina that regularly covers health and wellness topics for Mattress Advisor. She is especially passionate about understanding and researching mental health and loves to educate others on the topic through her writing.

Cruising to Hawaii and Beyond

My parents and I decided to embark upon another cruise for this year's family vacation - this time to Hawaii and British Columbia.




Lahaina, Maui

My mother and I both have Familial Adenomatous Polyposis and Short Bowel Syndrome - she has an ileostomy whereas I have a straight pull thru. Vacations and activities are always a concern as we require daily medications to help us function and my mother requires to change her ostomy appliance approximately every 4 days. On our last vacation to Florida, my mother required almost daily ostomy changes due to leaks and she almost ran out of appliances. She even had to change her ostomy appliance while in the airport on our way home! She was blessed though without any issues with her ostomy appliance this trip even though she packed 14 changes for our 11 night cruise just to be on the safe side. I took my Lomotil medication daily to help slow my Short Bowel Syndrome to allow me to participate in activities. Unfortunately, Lomotil irritates my intestinal ulcers causing bleeding and risk of lower hemoglobin at a faster rate thereby shortening the length in-between iron infusions and the effectiveness of my daily iron medication. I also have to be mindful of my Lomotil because it can increase my risk of intestinal blockages. My chronic nausea was exacerbated by tour buses and the rocking of the cruise ship at times but overall remained manageable.


We flew into Honolulu on the island of Oahu and spent three days there before the ship left for the


Hanauma Bay

island of Maui. We spent an extra night in Oahu to allow us time to travel to Waikiki so that I could obtain another Hard Rock Café shirt for my collection. While in Waikiki, we enjoyed a seafood dinner on the beach at Hula Grill. While roaming around Waikiki we watched street performers sing and dance. The following day we spent the morning at Pearl Harbor to visit the memorials and museums there before embarking upon the cruise ship. On our third day we went on an island tour that took us to the National Memorial Cemetery of the Pacific, Hanauma Bay, and Halona Beach Cove and Blowhole.

Me doing IFly

The next day was a sea day and we cruised by the Napali Coast on Kauai - a sacred place to Hawaiians with a mountainous shoreline. While at sea my mother and I participated in IFly Indoor Skydiving on the ship. We were both nervous as we are not particularly thrill seekers but by the end of it we were glad we had the experience. One participant was in the tunnel with the instructor at a time and the instructor communicated through hand signals on what we needed to do in order to maintain stability in the air. He didn't let us float too high or too low and ultimately it was a fun experience. The ship also had a flowrider surf machine available at no additional cost to passengers but that was beyond my mother's and mine's interest level although it was enjoyable to watch others attempt and even succeed at the flowrider.

We arrived in Maui for two days allowing us time to attend a luau where we learned about and


Maui Plantation

watched Hawaiian dances, clothing, and traditional Hawaiian foods. We roamed around Lahaina, Maui looking at local shops, restaurants, and museums. For our second day in Maui, we went on a tour taking us to the Maui Tropical Plantation where there were beautiful gardens and a restaurant with gift shop, Kepaniwai Park that showcased houses and gardens of various nationalities that have become a part of Hawaii, and McGregor Point and Hookipa Beach Park on the North Shore where we saw giant sea turtles on the beach and surfers amongst the waves.




Victoria, British Columbia

We spent the next 5 days at sea making our way to Victoria, British Columbia. Once there we spotted whales, seals, sea lions, an otter and two bald eagles while on a whale watching tour before heading to Vancouver, British Columbia. On our way into Vancouver we passed under a bridge where we were greeted by onlookers and the media as our particular cruise ship was the largest ship to pass under this particular bridge and was the first time this particular cruise ship had done so. It was an exciting moment onboard as it seemed all 4,500 cruise passengers gathered on the upper decks to watch this moment. It was hard not to get caught up in the excitement of all the other passengers and onlookers. We were allowed to disembark in Vancouver but decided not to go sight seeing as we had completed a tour of historic sites in Vancouver on our previous cruise to Alaska.


The next morning we easily made our way to the airport as taxis were waiting for us and we had a smooth flight home. I had always wanted to visit Hawaii and I'm grateful I had been able to share this experience with my parents.

I Still Grieve My Marriage Years Later

Today is my wedding anniversary. It would mark 8 years of marriage and 10 years together. As I look back over the memories that my wedding anniversary brings forth I remember that within a month of dating, I knew I was going to marry him. I had found my perfect match to create a life with full of our hopes and dreams. I had finally found the one for me.

Our wedding was perfect for us. We had a Blues Brothers themed wedding that was fun and light hearted. We had details of the movies interwoven into our wedding from handcuffs, converse shoes for the ring bearer, black suits and sunglasses for the men, and dancing down the aisle to Blues Brothers music by every member of the wedding party. I made my dress from my grandmother's wedding dress and my jewelry from that of my great aunt's. There was a lot of thought put into our wedding ceremony and reminiscing on my wedding day still brings me joy as I cherish all the memories of the details of that day.

I made the decision to end my marriage over 3 years ago now. It was a difficult decision to make but I fully accept my decision and I have no regrets regarding that decision. Even though I am no longer in love with my ex husband, I still find myself grieving my marriage in spite of my acceptance.

I was shaken and heartbroken when I awoke from a recent nightmare. I dreamt my ex husband and I were engaged and we lived in a busy, small town. The town was devastated by a plane crash and my ex husband died from smoke inhalation from the fire that was started in the town by the crash. My life had been torn apart before we were even wed.

I realize this dream was symbolic of the loss of marriage I experienced with my now ex husband. I can't escape the loss even in my sleep. I find myself wishing circumstances had been different to prevent our divorce. We made a great couple, we were great together until actions caused trust to be betrayed. I was unable to re-establish trust in our relationship, it no longer was a partnership, and I didn't want to live like that with another person. I didn't want to live with the risk of liabilities placed upon me by others. But I still wish things had turned out differently.

With the loss of my marriage also came the loss of goals, dreams, and a lifetime together. Events without my partner remain emotionally difficult. For example, vacations that would have been taken with him are now taken with different people or by myself. This year will be the first cruise I've ever taken without my ex husband. Traveling to new places has been emotionally difficult without him. I relied on him to navigate and drive us where we needed to go when visiting new places.

My parents recently celebrated their 40th wedding anniversary. As happy for them as I am, such celebrations remind me of what was lost within my own marriage. Not only were dreams lost but the future was lost as well. Now I create my own future without him, without a partner. I still long for a future spent with a lifetime partner, even though it will be with someone different. I was fortunate to find someone I wanted to spend my life with once but will I be so fortunate again? I don't know the answer to that. I hope I will be but not everyone finds someone to spend their lives with and so it may be the case for me. Only the future will tell.

In the meantime, I continue to work on my own personal growth and acceptance of how my life is now post divorce and the countless possibilities that the future may hold. I cherish the interpersonal relationships I have with others even if those are not romantic relationships. I hold tight the good memories of my wedding and that of my ex husband as I look to the future and what it may hold for me.

Exploration and Rare Disease Awareness in Philly

I recently was provided the honor of serving as a member on the Familial Adenomatous Polyposis (FAP) Patient Advisory Board Meeting in Philadelphia, Pennsylvania and was able to explore this historic town while I was there.

Independence Hall

I arrived on a Thursday afternoon and met with a fellow FAP patient and friend who I had the opportunity to meet in 2017 at the Hereditary Colorectal Cancer Family Day. Our hosts had arranged our stay at the Windsor Suites. My friend and I spent the afternoon and evening walking around Philadelphia. We visited the Independence National Historical Park where we saw the Liberty Bell, President's House remains, and Independence Hall. For dinner we visited the Reading Terminal Market where we enjoyed official Philly Cheesesteaks. The Reading Terminal Market is one of the largest and oldest public markets dating back to at least 1893 where you can find a variety of food merchants, locally sourced produce and meats, and vendors with various items for sale.

Liberty Bell

The following day we joined the FAP Patient Advisory Board Meeting. Janssen Pharmaceuticals and CISCRP (Center for Information and Study on Clinical Research Participation) came together with a local marketing research data collection company to discover the experiences and perspectives of FAP patients and their caregivers. The panel of participants included a mix of 10 patients/caregivers as well as doctors, clinical scientists, researchers and Global Trial Leaders associated with Janssen and CISCRP. It was a unique opportunity to not only meet others living with FAP but also a chance to share our experiences and opinions with these professionals for future clinical trials for FAP.

After the completion of the meeting, my friend and I explored the

Mütter Museum, at the College of

Mütter Museum

Physicians of Philadelphia, which showcases medical history. The museum houses collections of bodily specimens, models, and medical instruments. Among the two story exhibit rooms full of interesting objects, we saw Mega Colon, a colon with FAP, and even slices of Albert Einstein's brain! Photography was not allowed in the museum unfortunately. Outside was the  beautiful and serene Benjamin Rush Medicinal Plant Garden where more than 60 different medicinal herbs grow. Following dinner again at the Reading Terminal Market, we joined a few of our newly met FAP friends to visit over drinks before we all headed our separate ways that night or the following day.



Philadelphia City Hall

It was a whirlwind visit to Philly but it was full of historical significance not only of the United States but also an opportunity for patients and caregivers to make a difference in the future of clinical trails for the treatment of FAP. It was an honor to have our voices heard and to meet an amazing group of individuals fighting their hardest against this disease.