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

Health Maturity: Reaching New Milestones

Living and coping with a chronic illness from a young age pushed me into a level of maturity my peers wouldn't reach for decades. The responsibility of taking care of my own health, appointments, medications, diet, and more aren't typically tasked by most individuals until they reach at least young adulthood and if in good health, even years afterward. In my young years I learned a multitude of lessons providing invaluable skills and values to last me a lifetime. I learned perseverance, ambition, how to thrive and survive, hard work, responsibility, compassion, empathy, health intelligence, my body, fear, distrust, hopelessness, and anxiety. It is these last lessons that became so ingrained within my psyche that I was left with Post Traumatic Stress Disorder and emotionally crippled, fixated in an inability to mature and grow to complete independence and trustfulness. During health crises, I would regress to a child like state and mentality filled with terror.

Due to this fixation, I remained with the same doctor, a pediatrician for 20 years. My parents are always available to help support me through my health issues and in the past I required 24 hour care while in the hospital. I feared being alone and I feared doing too much myself while hospitalized due to pain and risk of increased pain. For example, I usually require multiple tries for an IV and once successful  I refused to move my IV arm as I learned that increased movement causes the IV to require replacement faster and I typically required a new IV at least once per hospitalization. I was rarely left alone due to the combination of lethargy, pain, fear, and difficulty completing tasks.

After 8 years of stabilized health and no hospitalizations, my streak ended. I was unexpectedly faced with multiple challenges I've been dreading for years in addition to hospitalization. I am in the process of obtaining an adult GI doctor and my doctor has been out of the office due to her medical assistant's death. As a result, I didn't really have a doctor assigned to follow me and provide orders when I suddenly required an adult GI doctor.
Due to ongoing depression, I restarted taking Zoloft medication and began experiencing lack of appetite. I was surviving on primarily cheese and crackers for 1.5 weeks. During this time I became dehydrated and Wednesday morning my blood pressure bottomed out to 88/58 resulting in near fainting. I fell backwards and hit my head at work. My coworkers forced me to the ER. My stubborn self wouldn't have gone to the hospital had I fallen anywhere other than work and  my coworkers knew it. I happened to be having a GI bleed this day as well - a normal monthly event for me. I was to be released from the ER after receiving fluids and I was scheduled an appointment with my to be  new GI adult doctor for the next day to be followed by a scope. As I was leaving the ER my blood pressure bottomed out again and this time I would remain in the hospital for four days. The hospitalization would lead me to new milestone achievements in my level of maturity. I was given a new IV without any tears this time. After I settled into my room, I sent my mother home and I spent the majority of the days and throughout the nights on my own. I provided my own care, even taking a shower. I received upper and lower scopes - my first ever scope with my pediatric GI doctor to be present. I require general anesthesia for scopes as I wake up otherwise and I have a preferred anesthesiologist who my pediatric GI doctor always tries to schedule with due to my level of comfort and trust with this particular anesthesiologist. These scopes would be performed with another anesthesiologist and a partner of my new adult GI doctor. I was anxious regarding the anesthesiologist and although I previously visited with the GI doctor and felt comfortable with him, I was overcome with anxiety and tears in the procedure room. The anesthesiologist and nurses provided reassurance and I quickly drifted off and awoke in the recovery room. I was informed that I have a few stomach polyps and four ulcers in my ileum and biopsies would be performed to test for cancer and Crohn's Disease. The GI doctor explained that ulcers in the small intestine are common in Crohn's and would like to cover all bases in my care. At my last scope in 2007 I had polyps in my stomach and small intestine. It was at that time my pediatric GI doctor gave the prognosis of developing stomach cancer by age 30. I'll turn 30 in just over one month. I anxiously await the result of my biopsies.
That night I ate my first solid food since prior to the hospitalization and that night I suffered the consequences of severe diarrhea and pain. I was given morphine for the pain and experienced negative side effects including intense nausea and intoxicated symptoms. After receiving Zofran, I required Phenergan to stop the nausea. The following day another partner of my new adult GI doctor visited with me and released me once I felt ready, stating he understood that I know my body and what I need better than any of the doctors.

I was discharged and I'm still coping with the inability to eat very much food due to severe pain. This is similar to how food affected me after my surgeries in high school. It took years for my body to adjust to food and only experience intolerable pain after large or rich meals. I'm extremely frustrated with this return to debilitating pain with any amounts or types of food but am taking it a moment at a time to readjust and resume my normal eating habits.

I made it home with my health, sanity, and a lot of milestones to be proud of. I survived a hospitalization without constant care, stayed the nights by myself, without my pediatric GI doctor overlooking my care, my first scope in 8 years, and changed doctors. I truly dreaded all that was to come about during this trial but I survived and am filled with a sense of hopefulness, relief, and pride. I can't believe I made it through especially with minimal difficulty and only brief PTSD symptoms.  I've been frightfully dreading these milestones for decades and all in one week I finally surpassed each one. Reaching a new level of health maturity has provided me confidence in my ability to face future hospitalizations, procedures, and changes.

Celebrate your milestones for each takes thousands of small steps 

to reach that moment in your life.