Relief vs Eating Disorder

A while ago, I randomly came across an article discussing the common risk of eating disorders among those with chronic illness and although not a novel idea, I find myself often thinking back upon this as a new revelation in my life. I hadn't given much thought to the link between chronic illness and eating disorders even in spite of my own previous diagnosis of 'relative anorexia'.

When I was in grade school after my first year of surgeries, my body became accustomed to not eating and so I ate very little even when I was allowed to eat freely. A consulting doctor wanted to provide me with a feeding tube and thankfully, my pediatric GI doctor stepped in and realized that my limited food intake wasn't because I refused to eat or had a desire to lose weight but rather a habit that formed as a result of my chronic ill health. I was placed upon a weight gaining diet and gained from the 80s to 100 pounds.

Through the years, particularly after my second round of surgeries, I have endured a very strong love/hate relationship with food. Food causes me great pain and inconvenience at times yet food is a necessity for survival and typically I enjoy the pleasure of eating. In spite of the pleasures of food, I still feel my very best when I fast for long periods. There are many days that I can easily fast for 2-3 days with little complaint. Not eating isn't a body image ordeal for me; the relief of not eating sometimes outweighs the pain and discomfort of eating. I feel my very best when I don't eat and when I'm underweight. I actually feel lighter, healthier, and more free without the heaviness of food and the digestion process weighing me down. And yet I realize this is unhealthy - one needs regular food intake to sustain proper health and nourishment.

The feeling of severe bloating and fullness, toxicity, and pain after eating has at times led me to finding relief through the use of agents with laxative properties, such as milk of magnesia or foods with laxative effects, or vomiting - although with seldom invocation and never with a premeditated intent such as in bulimia. Last night was such a night. I stood over the toilet and debated...do I want to vomit to relieve some of the pressure and pain or do I want choose the healthier choice and let my body complete digestion on its own. Once again, I realize this is unhealthy behavior but at times I find the possibility for relief overpowering.

Understanding the desire and need for relief from pain resulting from eating leads to understanding the fine line between relief and an eating disorder. Habits are easy to form, especially when they are positively rewarded, such as pain relief. These habits can become compulsive and obsessive in a short time as the cycle is continued. The line between relief and eating disorders becomes smaller and smaller and we can be left with greater issues than those with which we started.

It's been 20 years since the way I look at food changed and during that time my body's reactions to food have changed multiple times and each time a new set of trial and error learning commences. I don't easily accept change and often must undergo several backfire events from resisting adaptation before I will begin to alter my behavior and adjust to a new set of rules.

Adaptation is necessary to prevent further complications such as the risk and side effects of eating disorder like behaviors. It is an ongoing learning process as we gain understanding through trial and error and in discussion with others to learn from their experiences and insights as well. It's necessary to discover how our body reacts to certain foods and in what quantities as well as taking into consideration our altered digestion that presents with challenges to absorption and digestive processes. Such discovery will allow us to make better eating choices while reducing negative side effects. Yes, easier said than done. 20 years later and I still strongly resist what I know is in my best interest when it comes to eating and my food choices as I often cycle between healthy eating and overindulgence and poor food choices. Recognizing our harmful choices and behaviors is a start to changing harmful to healthy, as without recognition there is little room for change. Recognizing and understanding the struggle of one evil - pain - against another evil - unhealthy behaviors - helps us to make better decisions and realize the consequences of both choices.

Finding the balance between health issues and diets can be tricky as some diets for different conditions contradict one another, such as renal and diabetic diets yet renal failure and diabetes are often seen together. For healthy food choices and information view the following guides for ostomates and those with short bowel syndrome. Encourage and support one another among the struggle. If you think you or someone you know has an eating disorder, seek help.

Celebrating Birthdays and Survival

Today I am 30 years old. Most people fret over reaching 30, leaving their 20s and "younger days" behind. My mind is elsewhere today as I survey my life in awe. I've miraculously reached an age I never believed I would reach. I have surpassed ages I shouldn't have passed. Like many with chronic health issues, being told that I shouldn't have survived a situation or I'm not likely to live past a certain age isn't new to me. I've heard such statements since I was 9 due to complications and medical negligence and again throughout high school and into college during a several year recovery period from my reversal and subsequent complications.

I recall lying my head on my mother's lap as she sat on the couch stroking my hair and I told her how I loved her and said my farewells. I could feel the life draining from me, peace beginning to surround my spirit. I was uncertain how many more moments I had remaining but I knew they were coming to a close. I watched her tears run down her cheeks as she gazed upon and told me how she loved me. I had never felt such peace and have never again since this time.

I was back in the hospital soon after, veins being pumped with electrolytes and blood coursing life back into me for another day. If this had been delayed in its delivery by a few more days, I wouldn't have survived. There were many weeks my doctors weren't sure if I'd live to see them the following week due to risk of heart attack or brain seizures. Over the following years my health would gradually improve and become stable again.

Due to my ongoing health crises, I came to fervently believe that I would not live past the age of 21. I held this belief so firmly that I completed all of the end of life documents and arranged the details of my funeral according to my wishes and distributed copies of this information to my executors of my will. This belief was further cemented as I began to develop precancerous polyps within my stomach and my pediatric GI doctor predicted I would develop stomach cancer by the age of 30. The treatment of which I was still unsure I would be willing to subject upon myself.

My conviction was so strong that I was left amazed when the clock struck midnight on my 22nd birthday and I was still breathing. How could I still be living? I have wondered this many times throughout my life. I have been prepared for death for 2 decades and at times I feel as though I have been teased with death and the chance for peace from my health issues, particularly on the most difficult days. I remain ready for the day of death, waiting for the day that I was told would come so long ago.

And yet I continue to survive. And survive quite well in my opinion. I had many years of struggles and presently I am battling chronic nausea, pain, and difficulty eating after a recent hospitalization. I remain standing amidst the battle. Cancer free. Precancerous polyps free.

I have learned a lot over the course of my disease and I have gained a unique understanding of myself, life, death, the world, and what Familial Polyposis (FAP) means for it all. FAP isn't a death sentence to me. It doesn't guarantee to shorten my life expectancy...it simply complicates my life. I won't know how it affects me otherwise until the progression of developments occur. FAP affects each person differently to a drastic degree. My grandfather had very little problems after he received his ileostomy until his death at age 81 from stomach and esophageal cancer due to the FAP. Others are not so fortunate and children are presenting with symptoms and precancerous polyps at younger and younger ages. Each person's story and battlefield is different though in the position of landmines. I refuse to believe I have no choice in my footing amongst the landmines though.

Life's a Polyp Shop

Donate to NORD FAP Research Fund

Refeeding is a Pain

I started the weekend early. Normally I try to sleep in, catch up on my rest and delay eating. The sound of my husband preparing for work kept me awake. My short to-do list for the day running through my mind. I'm awake, no need to try to force a return to sleep.

Completing my errands, I grab the largest cup of coffee the convenience store offers. Enjoying gulping down my lightly flavored coffee will help delay my solid food intake. I have my meals planned out today...even though I usually don't follow my meal plans. I'm aiming for a protein shake at noon. I'm rarely able to make my coffee last more than half an hour though. I have a food obsession and have difficulty delaying or slowly ingesting food or drink even when I know better.

I'm starting to feel hungry and my mind is reeling with possible food options. I'm unable to force myself to delay eating any further. I devour half a sandwich, the protein shake no longer sounding fulfilling. I wait, hoping I didn't make a mistake and cause myself to become sick once again. In less than 10 minutes my stomach feels full and a low grade pain begins to radiate through my abdomen. In the course of half an hour this pain may have me doubled over wishing I hadn't eaten. I hope I was able to prevent this severity by only eating half a sandwich rather than a full sandwich.

During the week, between coffee and a few snacks while at work I've managed to skip meals during the day and instead have a largish meal for dinner. This has allowed me to remain working. It's been a few days past a month since I started eating solid food again. Refusal to force an appetite resulted in my unexpected hospitalization a month ago. Now I'm caught again in a food dilemma. I am once again enjoying the taste of food and yet eating solid food causes intense pain causing me to not want to eat in order to prevent the resulting pain.

This week a former ICU nurse I work with visited with me and shared her theory that I may be experiencing symptoms similar to that of refeeding syndrome. I barely ate any food for a 1.5 - 2 weeks prior to my hospitalization and only had clear liquids for 3 of days I was in the hospital. Following my upper and lower scopes I was immediately placed on a solid food diet again without any gradual graduation from liquids to solid food. My coworker explained that immediately resuming solid food after a period of little to no food intake is difficult for the body and can cause serious health risks. Although I do not feel that I am at any serious health risks after a month of eating solid food, it would explain why I continue to have difficulty eating without severe cramping, bloating, and pain. I could understand my body having difficulty readjusting to food intake for a few days but not over a month. But then again...my body is not a normal body. My body reacts very differently to typical issues and circumstances.

My coworker suggested I begin a liquid diet for a few days and graduate to soft, bland foods such as mashed potatoes, applesauce, etc before returning to solid foods. She explained how my body needed to readjust to food even after a month of eating. My body was likely entering a starvation phase and with an already established sensitive stomach, immediately resuming solid food intake doesn't sound like it was a good choice. Since the first night of resuming solid foods, I have been experiencing the stomach pain, early fullness, reflux, and increasing nausea. Desperate for relief, I followed her advice...for a half day at a time. My hunger for solid food winning in the evenings. However, I was feeling better than I have in weeks during the day with consumption of only liquids. Due to my stubbornness, I have yet to actually complete a full day of only liquids thereby not allowing myself to slowly graduate from liquid forms to solid forms. Sometimes it takes longer for me to learn lessons with my body as I fight against what I know needs to be done.

My stomach is rumbling loudly and bloated in appearance, the pain increasing with each 10 minute period. I set myself up for failure by eating solid food this morning. I'm now miserable, envisioning a scalpel slicing my abdomen to remove my stomach and small intestine and the relief I imagine this would bring.

Albeit slowly, I'll commit to a liquid diet for a full day and allow myself to recover. I tend to require completion of several failed attempts before I am ready to submit to that which I do not really want. If I commit now, I may have resolved my own eating dilemma prior to my appointment with my new adult GI doctor next week.

Chronic Illness Teaching Moments: Tracy's Story

This is a guest post written by Tracy Dee Whitt.

I'm sitting in an Ear, Nose, and Throat doctor's office waiting to get a thyroid biopsy. Familial Adenomatous Polyposis (FAP) is a scary disease, it takes so much away from me and my family.

I was asked about what I've taught my children about my health and health issues. I pondered this question more as I sat in that ENT office, waiting again for a test which results may change my life again. How do you tell your children you have a deadly disease? How do you explain to your kids once again why you can't walk through the zoo, today you can't jump rope or play soccer in the yard, why you can't eat their favorite food, why you can't do so much that every parent should be able to do?



The Whitt Family - No Ordinary Family

I don't tell them everything at once, I break it down, and I don't give the doom and gloom tidbits that crawl through my mind weekly (if I'm lucky).

Before sharing how I tell my kids about my disease, I need to explain a little about my family. We're different. First, we adopted both of our children, Jeremiah is 5 and Payton is 7. Because of adoption my children won't inherit my disease, which I'm extremely grateful for. If my children were to inherit my disease I would make different considerations when educating them, so for this post I'm coming from a different angle than some who will read this.

Another factor that makes our family different is our son, Jeremiah, has autism. He doesn't understand my illness and wouldn't if I explained it to him so for this post I will only be talking about my daughter, Payton, and how I've shared with her about my disease and how she's dealt with it.

I had my colon removed when I was 18 years old (I'm now 36). The removal of such a large organ has caused some issues for me and thus we've talked to Payton a lot about the result of not having a large intestine. (I say 'we' because my husband is very supportive and helps to share with Payton about what I can and cannot do, why my body is the way it is.) This has led to discussions about my disease. 

I tell Payton that I've had my large intestine removed because if I hadn't, I would have cancer. I haven't really explained what cancer is to her because I feel it would cause her to worry too much. She knows her great-grandma died of cancer (different from what I face because this grandma didn't have FAP) and Payton's intelligent so I'm sure in some way she's connected some dots. Frankly, she probably avoids asking too much because she knows the end results of the word 'cancer'.

When I get tests done, she knows about them and knows what they're for. Although she doesn't know the scope of everything, she's aware that mommy has a disease and life is different because of it.

We try not to make life too different, but having this disease and adding a child who has nonverbal autism, life is going to be unique. We try to make it as normal as possible. We are very family-focused and we try to tailor our adventures to fit everyone's abilities.

I've also really focused on getting all I can out of my good days. I only have so much each day and there are days when I don't have anything at all - I'm exhausted and in pain. On the good days I try to spend quality time with my kids. I take them often to hug, hold them, and do any activity with them they enjoy.

Overall, Payton is empathetic to how I feel but there are times when she gets tired of not being able to do something because I'm sick or because I'm sleeping. There are many times I feel guilty because I have this disease, mainly because of how it's affected me. I get so frustrated and a large part of that frustration is around what I can't do with, or for, my family.

So, how do you tell your child about your serious rare disease? It's hard, I don't know that there's a simple way to go about it, especially when it's a disease that's trying to take your life with every breath you breathe. Cancer conversations are horrible to have with children. I think the best way to go about it is slowly and simply, making terminology as simple as possible and leaving out the catastrophic information as long as you can without shutting your child out completely.

I believe that when a parent has a serious illness it can create a compassionate child. I've seen this in our daughter, but more so because of her brother's autism, and this is probably because it's something we live with daily. Many conversations center around Jeremiah's disABILITY.

Because of living with autism and having open conversations about it, Payton has become an awesome advocate for special needs. She is extremely accepting of people who are different and so loving toward others. She is also very helpful with her brother even when I don't ask a thing of her. She knows. She has an innate ability to understand that I need help with Jeremiah and she goes out of her way constantly to assist him. I think so much of who she is stems from having the family she does (both because of her brother's autism and my illness). We explain and openly talk about so much and we are also very supportive of one another.

The family I grew up in treated this disease far differently and in the end it wasn't the best for me. This disease has killed several of my extended relatives including my Grandma, she passed at age 47 when my mother was 22. My mom saw this disease take her mother in such a horrible, unthinkable way, yet she put it under the covers and didn't face its reality. She didn't have a colonoscopy until she was 39, she's extremely fortunate she didn't have cancer and the doctors were able to remove her colon and she's still alive at age 62.

However, this approach of blanketing it and not facing reality caused me to not see what could happen to me. I lived in a sort of utopia. I knew I needed to get regular colonoscopies but I didn't really understand the full devastation FAP can cause. I skipped those colonoscopies for years, probably due to my mom being fine when she was 39 and not having any other complications. I didn't understand that it's not as simple as removing every polyp. I didn't realize how fast this disease can escalate. There was a lot I didn't know. Open communication and further learning could have helped me know what to watch for.

My mom never wanted to talk about her mother's passing, in fact, it affected her so much that she hardly ever spoke of her mom, even the good times. Her death had wrenched my mothers heart so much that she wasn't even able to talk about her. Because of this I never learned about my Grandma, what she was like, what she loved to do, what her best qualities were. Nor did I really know how FAP had taken her. I didn't need to hear every detail at age 15 but as I saw my 20s passing it was something that should have been talked about. I needed to know what I'm facing.

There are some benefits to me living in that utopia but more information would have been better. For example, there's a good chance I wouldn't have done foster care or adopted a special needs child if I'd known what I know now. However, I'm so glad I did, it's been the best decision I've ever made.

These conversations are difficult and so much more for parents who have children who inherited this disease. Take it one step at a time and know that none of us are going to do it perfectly.

Tracy Dee Whitt authors the blog LovinAdoptin, encouraging and supporting adoptive and foster parents as well as those living with autism. She can be found on Facebook, Twitter, and Pinterest.

Against the Odds

When I was unexpectedly rushed to the hospital and admitted for four days, my only concern was my ability to continue with my travel plans with my husband and parents to Alaska on a cruise the following week. An Alaskan cruise is a bucket list vacation for my mother and I, we've been planning and preparing for over a year and there wasn't anything that would make me miss our cruise short of being held hostage.



Seward, Alaska

After a limited appetite leading up to my hospitalization and 2.5 days without solid food while in the hospital, my stomach has not been able to tolerate food properly since resuming a solid food diet. I have been experiencing
severe stomach pain, cramps, and bloating shortly after eating and the pain lasts for the majority of the day and at times into the next day. I attempted to return to work immediately after my hospital release but my body rejected my attempts and forcefully informed me of my inability to resume normal work and activity. I was forced home for the next two days.



Snorkeling in Ketchikan, Alaska

My parents and husband urged me to cancel our travel plans due to the onslaught of pain and how it would affect my travel and activity ability. And I must admit, I was uncertain myself although my stubbornness would not allow me to miss this travel opportunity I had been yearning for over the years. With proper rest and limiting my food intake, particularly during the day, I managed to complete a half work day prior to leaving for our cruise. I wasn't sure how much of the activities I'd be able to participate in nor how much I would enjoy even being in Alaska but I maintained my argument that I would be able to enjoy our time on the ship and venture through the cities and excursions as able. I would watch my food intake, rest when needed, and take Lonox and pain medications to maximize my participation ability. Some days were more difficult than others due to the stomach pain but to my surprise and relief I was able to enjoy the majority of our trip, complete all excursions, and participate in many activities.




Hubbard Glacier. My husband spreading awareness of FAP

We spent an evening in Anchorage before driving to Seward for our cruise departure. Docking in Juneau, Skagway, Icy Strait Point in Hoonah, and Ketchikan we enjoyed whale watching, a train ride through the White Pass Yukon Route, nature walks, local culture education, and snorkeling. Our last day was spent touring Vancouver, British Columbia and to my surprise I managed to walk 5 miles in Vancouver to visit the Hard Rock Casino for souvenirs to add to our Hard Rock clothing collection! We hailed a taxi cab for our return to the train station for time management and relief from shin splints and further risk of dehydration. In spite of daily stomach pain that required rest from activities aboard the cruise ship and mandatory consideration and preparations with food and medication, I thoroughly enjoyed our trip and I didn't want to return home. My soul was touched by the history, culture, and nature of Alaska leaving within me inspiration and peace.



Mendenhall Glacier Juneau, Alaska

Since returning home the pain has yet to subside to my previous normal levels and I am limiting my food intake during the day to allow myself to function with minimal pain at work and during activities. I have an appointment with my new adult GI doctor at the end of the month to review my biopsy reports from my stomach polyps and intestinal ulcers as well as future treatment. I did obtain a copy of the pathology reports stating the stomach polyps were hyperplastic meaning they were benign and not pre-cancerous polyps. My ulcers were typical and without any malignancy meaning I understand that I do not have Crohn's Disease nor did I anticipate I did although I appreciated the doctor covering all bases. During my early college years when I began developing stomach polyps my doctor provided the prognosis of stomach cancer by the time I was 30. I am less than a month away from my 30th birthday and I'm ecstatic to report that my doctor's prognosis was wrong. I may develop stomach cancer later on but not before age 30!


Icy Strait Point, Hoonah, Alaska