Saturday, June 23, 2018

Lessons Learned From not Eating

It has been 10 months since I have eaten anything. (If you are new to the blog, check out THIS post, as it explains the history behind the madness).  This has been a challenging trial, to say the least. There are many things I have learned about myself, as I have had to endure this. I have also noticed things about the world as I have observed places and experiences that involve food. Spoiler: It’s everywhere.

I was throwing up all day every day in the first part of my recovery. I just thought it was a normal symptom due to having 90% of my small intestine removed. Unfortunately, after about a month of vomiting, they discovered through a CT scan that there is an obstruction (blockage) in my remaining intestine. The two pieces of intestine that were reconnected closed up, creating a blockage with little to no room for anything to pass through. Anything I was trying to eat had nowhere to go and would just come right back up. It was the most miserable month of my life.

I sadly realized that I would have to go without food before they would open me back up to remove the obstruction. My medical team has agreed that the best way for me to get my “food” right now is through a central line that rests at a vein near my heart. The best way I can describe it; is like an implanted IV on my chest. It is inserted through my neck and comes out my chest. I used to have a PICC line that was on my arm, but as the months have progressed, I now have it in a different location. Every night I hook myself up to a big bag of liquid nutrients and run it for 14 hours. Many people think that I feed myself through a special tube into my stomach, but I do not have the ability to handle “tube feedings” at the moment. However, I hopefully will in the future! 

 At first it was difficult to just be in the same room as food. When my family sat down to dinner I would go upstairs until they were done. I had such a hard time fixing Samantha food that I would make it at record speed just so I didn’t have to look at it. That first month I didn’t want to go anywhere where food was being served. I quickly realized there is no escaping food.

Food is everywhere.
I know this sounds obvious, but I truly did not really consider this before. America is definitely known for its abundance of fast food. At times it feels like I can’t even drive down the street without seeing at least ten billboards for all things greasy, fried and delicious. We recently went on an 8-hour road trip and the highway was scattered with pictures of fast food. If you ever need to know how many McDonalds there are from Orlando to Louisiana, let me know!

Something that I quickly came to realize is that there are very few social activities that don’t involve food. Every church function, girl’s night out, party or gathering was heavily centered on food. I also realized that almost all our date nights involved going to a restaurant or having a treat afterwards. It has been difficult, but I have still gone out to eat with family and friends in order to not let this control my life. As I have watched others indulge, I have realized how much I myself, love food.

I have always loved sweets and snacks. It was common for me to put the kids to bed and have a late night treat to reward myself from the stresses of mother life. Almost everyday my schedule involved a Diet Coke during Samanthas naptime. I love to cook, bake and try new recipes. Tasting my creations is so rewarding and I love sitting around the dinner table with my family. My negative association with food stems from not eating the healthiest things. I love fruits and vegetables, but I will admit that I was not examining or tracking my calories or ingredients. I also came to realize that I have an emotional connection to it. If I were stressed, bored, unhappy, celebrating, etc., food was involved. I believe this has added to the difficulty of abstaining from food for so long.

It’s been eye-opening.
Where I once thought of food as a treat and something to indulge in, I see it as a way to sustain life and to fuel your body. I thought that not being able to eat would make my cravings center around junk food, and while I do still crave in-n-out and movie theatre popcorn, I have found myself longing for salads, fruits and vegetables. It is as if my body knows what it needs in order to sustain itself in the long run. My body craves nutrients and vitamins that I used to get by eating.

This has been a big learning experience, and my whole mindset has changed with food.  I have learned so much about nutrition as I have had to have this special “diet”. I have learned which vitamins and minerals are needed to sustain life, how much of them I need to get, and just how important nutrition is! I hope that one day when I am able to eat again, I will want to fuel my body with wholesome food that will continually heal my body. Being 29 years old and feeling like a 70 year old has made me yearn to feel healthy, and I know good foods will be a key component in my nutrition when I am able to eat.

And hey, when I am trying to keep myself positive I just remind myself that I have finally lost all that weight I was having a hard time losing. Ha! Hardest diet ever…I do not recommend.

I have just gotten my surgery date scheduled for August 14th. This is where they will remove the obstruction and repipe my intestines so that things will be able to pass through. Although my anatomy will never be normal, hopefully I will be able to eat a few things after! We are very excited about that.

So many people have been helpful and caring in this process. People have regularly brought over food for Peyton and Samantha so I wouldn't have to spend more time in the kitchen. They have had us over for dinner, and Peyton has always tried to be very quiet with his eating/snacks. I so appreciate everyones helpfulness and understanding in this crazy situation. The other day Samantha even told me that her ice cream wasn't very good, in order to help me feel better. I am lucky to be surrounded by so many caring individuals. 

Monday, March 19, 2018

I get by with a little help from my friends.

Since my diagnosis and hospitalizations I have often had people ask me how I am doing. It is always such a loaded question, like, where do I begin? How much do they know? How much do they want to know? Should I be honest, or should I act like I am doing good?

            Most of the time I say something along the lines of, “I am hanging in there.” or, “today is a good day.” I just figure no one wants to hear, “Well, I threw up all night and I haven’t pooped in a week, but enough about me, how’s the family doing, Susanne?” Turns out, people don’t just ask this question to take up time. They genuinely want to comprehend how I am doing and what they can do for me. I learned this when recently a friend asked how I was doing and I replied with, “I am feeling so much better.” She then turned to me without skipping a beat and said, “Okay, thanks for accommodating me. How are you really doing?”

            I paused and just let it roll. I may have rolled it too eagerly because pretty soon I was a sobbing mess, but my friend didn’t falter or awkwardly change the subject. She listened. She sympathized. And the surprising part was she thanked me for being authentic because then she was better able to understand my needs. It was there that I was realized that being vulnerable doesn’t make you weak; it makes you stronger for being genuine.

            The other thing I have learned is that people want to help, people want to be needed. I have seen this countless times as I have watched my tribe of family, friends, acquaintances and strangers have offered their love and assistance. This has been a very humbling experience for me…to say the least. I have always wanted to do things myself. I have a really hard time asking for help. I would almost rather serve everyone around me before asking someone to lighten MY load. I always thought like asking for help made me inferior, but then I would get upset when some of my friends kindly refused my help when I offered. By the way, why is this a problem with women? It seems like men easily can text someone, “hey bro, wanna help me move my whole house this Saturday? K, cool.”

            After my incident happened and I was on the long road to recovery I literally could not do certain things. I have felt so much love for people who jumped right in to fulfill the things I could no longer do.

            I feel love as I watch people deliver dinner to Peyton and Samantha. I feel love as I see a whole ward of mothers look after my children when I am in the hospital. I felt love as my new friend, a cosmetologist, came to my home to wash, cut and style my hair the night I got home from the hospital. I felt love as my friend came to the hospital armed with girls night in activities and proceeded to curl my  hair and paint my nails. I have felt love as people have sent baby blankets, get well soon cards, inspiring books and beautiful flowers. I felt love as I have been given countless priesthood blessings from so many willing men. I feel love when my daughter shouts to me as I am laying down, “I hope you  feel better!” I have felt overflowing love as I have watched my mother, father, and in-laws dedicate months and months of traveling to Florida to help us. I feel love as a friend has been doing my laundry. I felt love when our friends came and spent their vacation watching my kids, cleaning my house and running errands for me. I felt love when a few days after my surgery my husband carried me into the hospital shower and washed my injured body, completely drenching his fully clothed body in the process.

            I often have thought about this whole situation as a nightmare and an experience that impaired my life within a few minutes. I have recently started to try and shift my thinking to all of the incredible blessings that I have seen and the love I have felt as this has transpired. Had this never have happened I never would have become closer to my husband, my parents, my sister, Peytons coworkers, my new friends and fellow church members.

            If you are struggling with a difficult situation, may I share with you what I am starting to slowly learn? There is good.  Find it. Hold onto it and try and grasp it when you feel like you can’t go on another minute. Feel love as people administer service for you. A nurse in the hospital shared something with me when I was being discharged and overwhelmed at the thought of recovery. She said, “Someone asked me if I could eat an elephant.” Of course, I replied, “No!” To which they told me, “You could…one small bite at a time.”

            Remember, the Lord has not given you more than you we handle. These trials and hardships will make you so much stronger in the future. I know this can be difficult to hear when you just want to curl up in a ball and sulk in self-loathing. But, I know that you (and all of us!) were not sent to earth to be miserable.

            So if you are going to walk away with anything from this post; let it be this. Be vulnerable. Ask for help, feel love through the help and look for the good. I know you can do it!

Friday, January 5, 2018

A Year Without Food

I went home from the hospital with something called a PICC line. (In fancy doctor terms it stands for a peripherally inserted central catheter. You’re welcome.) The best way I can describe it is similar to an IV you would get in your arm except it is inserted into your arm and the line goes into the main vein near your heart. A PICC line is where they can give you nutrients, medicines and draw blood labs. We inject vitamins into them every night. They use this instead of a regular IV if the person will need this more long term. Because I am not eating enough to sustain me, I get my daily nutrients from this line every night. Around 8:00 I hook myself up to a big bag of medicine that runs for 14 hours. This gives me all the nutrients and vitamins to keep me going. I think it is rather amazing that a bag of what looks like water can keep a person alive. Thank goodness for modern medicine!

At first it was hard to be hooked up to something all night. I felt limited and tethered to my bag. It was hard to carry around and also sleep with a tube on me all night. However, as time has gone on I rarely even notice it. Peyton has always encouraged me to not let the TPN (the bag of nutrients) hold me back and limit my lifestyle. We got a backpack to hold my medicine and that has been so helpful. I hook that thing up, strap it to my back and I am good to go. I have taken it to Samantha’s soccer games, church, the movies, the store, etc. A lot of people are surprised that they don’t even notice that it is not just a regular backpack.

When I came home from the hospital I was on limited foods and eating applesauce, chicken broth, crystal lite, and very small bits of “approved foods” like really moist chicken, and lactose free yogurt. I was very nervous about how my body was going to react to the foods. The small intestines is the place where the majority of your nutrients, food and vitamins are absorbed so I was nervous to see what would happen if I didn’t have much of that piece. I was also receiving tube feeds through a tube in my stomach that would keep my intestine working.

After I was home for about 2 weeks from the hospital things went from bad, to worse. I would throw up constantly, all day every day. I felt awful, depleted and hopeless. I would sleep with a bucket next to my bed because without fail I would throw up multiple times in the night. I was running on little energy because whatever my body was eating was coming right back up. They decided to do a CAT scan and discovered that I have an obstruction. This is due to more of my small intestines being necrotic. This is best described as a blockage. Anything I was eating or bile I was secreting had nowhere else to go. I was admitted back into the hospital for some additional tests. They administered multiple endoscopies where they put a balloon down my throat, blow air into it and to try open the obstruction up but after about 3 of those, they said they were not working and it was too dangerous to keep doing.

 I then had a tube inserted with two bags to drain my small intestines and my stomach. This is NOT a colostomy bag. It drains bile. Which, you’d be surprised at how much that is! I still have these attached to my stomach that has required me to be creative in my clothing. The great part about these two bags is I am not throwing up all day anymore! The bile now has somewhere to go and it no longer has to come up. I have felt so much better since they inserted this tube.

( Heres a picture of my two bags. I guess we're at that point in our relationship where I can show you things like this.) 

After that hospitalization, I went home where they stopped my food intake and my tube feeding. I was (and still am) sustained 100% on the nutrients bag. That’s right, I haven’t eaten anything in almost 5 months. I am allowed sips of water and chicken broth. This has been by far the hardest part of my trial. I love cooking and I love food and when I wasn’t able to eat anymore I mourned that. First of all, you don’t realize how much exposure to food we have. Everywhere you go you see advertisements for food, every church gathering, or activity with friends and family involves some sort of eating. The holidays were obviously the worst. Although Peyton bought me the most expensive water he could find. I would find myself becoming almost obsessed with food. I would have Peyton describe how it tastes, I would watch others eat and tell them in what order they should eat it. At the same time, I have had to withdrawal myself to situations where my favorite foods are being served or take a second and regroup when I am having a craving.

 I miss textures and flavors and chewing! With that said, I have been very strong in this whole process. I don’t say no to activities where there is food and most of the time I sit down with my family at dinnertime. I’m also a wife and mother so I am still cooking for my family. I miss date nights that involved restaurants, late night ice cream treats, and junk food at Disneyworld. I have to remind myself that this is only temporary.

Savages, I tell you!

My surgeon does not want to go in and remove the obstruction for about a year. Her reasoning (which I support) is if she were to go in now so soon after my other surgeries it could compromise the small portion of healthy intestine that I still have. So right now, for about a year I am giving my gut a “rest” and not eating food.

I have some great doctors, surgeons and specialists I am working with. I have a home nurse who comes in once a week to draw labs and clean my PICC line; I go and visit my specialist in Miami once a month and my surgeon who did the surgeries have all been a great support. Even my OBGYN who was watching this all happen, has been a constant support, and we text often. I feel very fortunate to be surrounded by so many capable health care professionals.

Before having Preston I had decided to give birth at a well renowned baby hospital. I called it a baby factory because they just birthed those babies by the minute. But about a month before everything happened I decided to try another hospital, which was much smaller but had all the services a regular hospital would have. I told Peyton at the time I didn’t know why I chose the smaller hospital, but we went with it. Looking back I know I was guided by the Lord to choose this hospital because my surgeon had seen a similar case like this before and if I were to have given birth at the baby factory I would’ve had to have been transported to the downtown local hospital, and it was so time sensitive, I don’t know if I would’ve made it. Plus this allowed me to be close to Preston when he was in the NICU.

Although this is an unfortunate and rather horrifying event, there have been so many blessings through all of this. I feel grateful to be alive. Trust your gut (haha, that’s not really funny, is it?) Listen to the Lord, and he will guide you to where you need to be and with you need to be with.

The other day I was at the Kennedy Space Center and I was wearing my backpack. I had to take Preston out because he was getting fussy and some man yelled out to me. “I see you with your backpack and everything. You’re a great Mom! You’re doing a good job!” I wanted to fist bump the world at that moment. I thought to myself, “Heck yes, I am! I am killin it!”” But ya know, I just humbly said thank you J I never knew proper strength until I had to be strong. For myself, and for my babies.

So many people have offered to cook for Peyton, watch Samantha and Preston for my doctor appointments, drive me places, do my laundry, etc. I feel so lucky that I have my own cheer squad and tribe looking out for me.

The next step in my recovery will be my surgery in about 9 months to remove the obstruction. If all goes well I will be on a specific diet and hopefully be able to wean from the PICC line bag of nutrients. I will then be given tube feedings and hopefully in the future I will be able to eat enough things that my body absorbs to keep me healthy without any tubes or lines. I am hopeful this will happen and I am grateful I am here to endure it with my family. 

Monday, December 18, 2017

Gain a Son, lose a gut.

I’ve probably written this blog post in my mind at least 5 times by now. It is by far the toughest thing I have had to write. You know those disheartening stories that you hear about other people? You never expect these rare and devastating events to happen in your life. Let me start from the beginning.

We had been living in Florida one month, and I was 35 weeks pregnant when I woke up one morning feeling very poorly. I threw up a couple of times and started to have some cramping. I laid down and felt a bit better. For weeks I had been having Braxton hicks contractions, but they felt similar to the ones I had when pregnant with Samantha. I thought that these cramps were more of the same. As the day progressed the cramps turned worse and they were settling in my upper abdomen, which I thought was unusual. Peyton came home early from work, we dropped off Samantha at our new friends’ house, and we headed to the labor and delivery area of the hospital. They immediately hooked me up to a fetal monitor to track the baby’s heart rate and check on the contractions.

 They were a bit bewildered from the beginning because of where my pain was located. I was having contractions but they weren’t regular. They decided to relieve me from my unbearable pain by giving me my epidural. Then things got really bad, really fast.

After getting my epidural I had relief for 10 minutes before the pain returned. They decided to give me more of the epidural to rise the numbing up my abdomen, but it didn’t work. I started throwing up. Peyton was a great support and held my bucket, but as he wiped my mouth he saw blood.

He hurriedly walked into the hall and called for the nurse who came in and verified that it was blood. After that about 10 doctors and specialists came into the room and they all agreed that it was time to get the baby out as quick as possible via C-section and this would provide them the ability to see what was happening in my abdomen.

I remember them immediately wheeling me into the Operating Room and it felt like all the doctors and surgeons from the whole hospital had joined us. I kept asking everyone through tears who they were and what they were thinking was wrong. Everyone cheered me on and gave me assurance. I remember them pulling Preston out and my doctor exclaiming, “Here’s your baby, Catherine! Here he is!” They took Preston and put him on the exam table next to me. He wasn’t making a sound for what seemed like an eternity, but Peyton told me later it was only a few minutes.  After they got him stabilized they told Peyton to follow the baby to the NICU. They told him that they would need to do a surgery on me and that I would be put under. Before they wheeled Preston out I got to put my hand into the incubator and pat his stomach and hold his hand for a few seconds reminding him to be strong and that I would always love him. This was one event that I can remember with perfect recollection. After that my world went black.

This is all very hard to recollect for you, as my emotions following the next few days were all over the place. There are about 4 days where I do not remember anything. Peyton kept a journal to help me piece it together.

When they put me under after the C-section and investigated further they discovered that almost my entire small intestines was tangled up and had lost blood supply. Because of this, my intestine was dying. The first surgery I had immediately after delivery was to untangle the intestines to see if it would regain blood supply and return to normal. It took them over 4 hours to untangle my intestines, working hard to be delicate with them in order to not make further damage. After they did this surgery they knew they had to go in the very next day to see if untangling the intestines was successful. After the first surgery was Peytons best and worst night of his life thus far. His son had just joined the world and his wife was going to possibly leave it. The surgeon discussed with Peyton the severity of my situation. At this time he told my Mom to come right away and called the Bishop of our church to have them administer a blessing to me in the ICU (Intensive care unit).

The next day when they re-opened me they learned that previous surgery was not successful. They started to remove and resect the pieces that were no longer salvageable. This was difficult because some of my intestine was necrotic in places and healthy in other parts. The only way to do this successfully was to get rid of a good portion of it and then reconnect it.

(Here is my small intestine.) 

For a few days I was intubated and sedated. Preston was still in the NICU and Peyton would spend all day going back and forth visiting his fragile son and wife. I cannot imagine what Peyton was going through emotionally as all of this was happening. Both our families do not live by us, but our new Florida family jumped into action, arranged care for Samantha and had people deliver dinner to the hospital for my mom and Peyton. I will always be appreciative and grateful for our new friends who became our family to help us in our time of need.

They performed various x-rays and endoscopies in my time in the ICU. One day I started to have bad fevers and they decided to do a 3rd surgery to go in and see if I had an infection from the removal. They were relieved to discover that the intestines were okay and they further flushed out my abdomen to make sure it was clean and healthy.

After the 3rd surgery, I started to awaken from days of anesthesia and coming out of the fog of pain medication. What that brought was paranoia, anger and confusion. Peyton’s favorite “ICU moment” was when I exclaimed, “We’ve been duped! This is a magic show that we are in!” I “remember” seeing certain things that were not happening and hearing things that were senseless and outrageous. I also was very confused at what had happened to me.

My days in the ICU were the darkest days I have ever experienced. I was coming in and out of heavy pain medication, which made me sleepy and jumbled. I remember I would cry when Peyton would have to go home for the night because the nights are the times when I would hear imaginary people talking. I was left to my own contemplations. At one point Peyton said I asked them to sedate me so that I would not have to experience another emotional and hysterical night.

Every day Peyton would explain the situation and what had happened to me. He would describe my new anatomy and what the future could mean for me. He would try and use easy words for me to understand due to my foggy brain. Then I would fall asleep to take a nap and I would forget everything that he had told me. He learned to wait a few days to tell me details and to only tell me the pieces that I would need to know at the time.

After 6 days in the hospital I finally felt well enough to go meet my son, Preston. I will never forget this moment. I was apprehensive and nervous to go see him. I had a lot of equipment that I was still hooked up to and my physical comfort level was tolerable but not great. The moment that I was wheeled into his room in the NICU my whole heart burst and I forgot all of my pains for the hour that he was in my arms. He was perfect, and so much tinier than the pictures of him that Peyton had shown me! (5 lbs. 12 ounces). Every day I was able to go up to the NICU and visit him for around an hour. These were my most precious memories in the hospital.

The days passed and I ended up progressing. I was able to drink chicken broth and sugar free crystal light. After 2 weeks of being in the hospital I was able to eat applesauce and yogurt, which was a huge improvement. I had a feeding tube (into my stomach) that gave me my additional nutrients, also. Some days in the hospital were better than others, but after a week in the ICU, I was transferred to the Progressive Care Unit where I spent a month before being able to go home. I lived for the hours where I would be able to see Preston and Samantha.  

The day that Preston was able to go home from the hospital was a day filled of mixed emotions. I was so excited that he was healthy and able to go home and be with our family, but I had a hard time not being able to be there for his first days in our home.

Two weeks later, I was given the clearance to go home. Peyton’s parents flew in to help with Preston, which was super helpful. It was so nice to come home and be with my children full time again. I had missed being with them. I never knew how much I loved being a Mom, until I wasn’t able to do it.

My diagnosis is short bowel syndrome, which is defined as the removal of more than 50% of small intestine. The main function of your small intestine is to absorb the nutrients from the food that you eat. I am still trying to understand what this means for me long-term and my ability to get the nutrients that my body needs.

I have chosen to write about this in my blog for a few reasons.  After I came home from the hospital I wanted to learn more about my diagnosis and to connect and learn from people who had similar stories. This condition is pretty rare and every time I turned to the Internet to find comfort or knowledge I came up ended handed. I want to be the support and resource for someone who is dealing with this frustrating and difficult condition that I didn’t have. If I can tell my story and give consolation to one person who is struggling, it will all be worth it. I have posted a few things on Facebook and there has been such an outpouring of love from family and friends. In the early days of my hospitalization acquaintances, friends, families and even strangers were praying for me. I had never felt so physically defeated but stronger because of the faith of so many people. I truly will never be able to provide my gratitude sufficiently. I am incredibly grateful for so many people who have cheered me on during this difficult journey.

So what now? How is my health since this happened 4 months ago… I plan to do a few other posts updating you on my status. I will tell you this. I am struggling but I am strong. My family has been a great support to me in my depression and meltdowns. I feel fortunate to have such a loving, sympathetic and devoted husband who has been there every step of the way. Every day has gotten a bit better, and I can feel the effects of so many blessings. I can do hard things, and I know that I have many people who will be there rooting for me.