Saturday, September 9, 2017

She Will Be Missed

Jennifer was a loving wife, mother, daughter and sister.
She was courageous in the fight of her illness and was an encourager of many who knew her. She will be greatly missed.

Wednesday, May 17, 2017

The Spoon Theory...

Many years ago, I heard about "The Spoon Theory". At first, it didn't make a lot of sense to me. I was new to my diagnosis and was basically flying by the seat of my pants. I didn't know a lot about gastroparesis and how the gastroparesis would effect my day to day living. The Spoon Theory was created by Christine Miserandino who suffers from Lupus.

To the average healthy person, whenever they wake up in the morning, the day is theirs. They can do daily mundane tasks such as showering, getting ready for the day or doing a load of laundry without experiencing the physical effects. Whenever they become tired, they can just recharge by resting or sleeping. If needed, they can even continue with their day pushing through the fatigue and tiredness.

To the chronically ill or disabled person, a lot of the times, they make wake up with decreased energy due to their health condition. They have to loosely plan their day in hopes to conserve and use their energy in the most proficient way. A way of measuring how much energy one has is where "The Spoon Theory" comes from.  Patients sometimes refer to themselves as a "Spoonie". A spoon is a way of measuring a patient's energy. Depending on the patient's health and medical condition determines how many spoons that person is allotted per day. Whenever the patient runs out of spoons, they have to stop and recharge. They simply can not push through. It varies with each patient but recharging may take a  few hours to days. Each patient is different. Once their body recharges and recovers, then they can resume their daily tasks.

In the beginning, I was horrible with conserving and using my energy in the most proficient way. Whenever I worked, I would wake up early since I had to commute to work. Some mornings by the time I was ready to leave home or got to work, I would be dragging. Some mornings, I would actually have to come in late or simply miss that day of work. I would be up all hours of the night from my gastroparesis and cleaning out so I woke up exhausted and weak. My diet was awful. My food absorption was bad. I was continually bouncing from liquid to solid diets.

It took a long time but I finally learned how to manage my energy and spoons better. Now I have a daily routine that I go by. I do the things that are most important and the rest can wait. Over time, I will try get those things accomplished and it not, it's no big deal. Since becoming a parent, I have been exceptionally careful with my energy. I don't over exert or push myself like I once did. I always make sure that I have enough energy (spoons) left for my daughter. She is my number one priority. If I don't get the laundry folded, oh well. I'd rather give her that energy.


Photo Credit:

Gastroparesis Friendly Recipe: Easy and Quick...

If you're like me, you have a ton of Pinterest recipe pins but don't ever get around to making all of them. There are only so many hours in a day and a lot of recipes don't fit into a GP patient's diet needs. Some evenings when it is time to start thinking about dinner, I am too tired to follow a recipe and cook something that is time consuming. I want something that is easy, quick and simple. A little while back, I ran across a Pinterest recipe that caught my eye. It is called "The Italian Wonderpot". I read through the list of ingredients and the recipe directions. I have to admit, I have been burnt a few times with Pinterest pins so I try to do my research to make sure that the recipe fits our family's palette and grocery budget. I do not like finding a recipe that calls for a spice that is hardly used at our house and costs four or five dollars. I don't consider those recipes to be budget friendly.

While I was reading the recipe, I realized that this would be something that I could eat too. The ingredients were things that I am currently able to eat without huge regrets or repercussions. It is also budget friendly and EASY! All of the ingredients are added to one pot so there is little clean up. Who likes seeing a sink full of dishes before dinner?

I added and changed a few things to the recipe to make it more to our liking. Since my husband likes to have some type of protein with his meals, I baked some chicken breast in the oven. I seasoned it with basil, oregano, salt and pepper. Once they were out of the oven, I simply sliced them into little strips so he could put them on top of his pasta. The recipe calls for a 28 ounce can of diced tomatoes. I opted to use a smaller 14 ounce can of petite diced tomatoes. The recipe mentions using frozen spinach. I however had some fresh spinach on hand and added it just before the pasta was finished. I wanted the spinach to wilt but still have its fresh green color.

I was really impressed with this recipe. It was full of flavor. Our family will definitely be eating it again in the future. I have left a link to the Budget Bytes website where the recipe can be found.

Italian Wonderpot Recipe:

Image Credit: Budget Bytes

Monday, May 8, 2017

bloating and body image...

As a gastroparesis patient, one of the biggest and hardest things for me to deal with on a daily basis is bloating and distention. I. CAN'T. STAND. IT. I'm not talking about bloating that takes place for a few days a month. I'm talking about bloating that takes place after every meal. It is almost as if I can just look at food and I will start to bloat.

Bloating has been an everyday thing that I have had to learn to deal with. I may sit down to eat something "GP sized" and not too long afterwards, I could pass for being in my second trimester of pregnancy. After dealing with the bloating and distention day in and day out for years, it has really impacted my perception of myself. I am automatically drawn to notice my bloating when I look in the mirror. To me, it is a much bigger deal than what it really is. In so many words, I make a mountain out of a molehill. With this disease, I feel like one of the biggest misconceptions that we deal with, is how the bloating and distention affects our personal perception of ourselves. This is something that is not addressed and talked about enough.

Let me address any conclusions that may be drawn from reading this. I am not anorexic, bulimic or suffer from body dysmorphic disorder. I have been tested for SIBO multiple times. Bloating is just something that I physically experience and feel. I love to eat. I am constantly making a list of foods in my head that I want to try and eat. The silver lining to having gastroparesis for me, is that it has made me love and appreciate food in a way that I didn't before.

Whenever I had my ileostomy placed, it totally changed how my body bloats and how it feels to be bloated. Before my ileostomy, I would bloat all throughout my abdominal area. Now the majority of the bloating is centered right across the middle of my stomach. I have spoken to my doctors about this. The change in the location of the bloating is due to where my ileostomy was placed and how my small intestines lie. I will notice pressure behind my ostomy which can be uncomfortable in addition to the fullness from the bloating. My abdominal muscles and walls have weakened as a result of pregnancy and various surgeries.

I was recently reading about models. As we all know, models have a strict diet and exercise routine. Before a runway show, a model will go on a liquid diet for days. The day of the show, they will abstain from any liquids. All of this is in an effort to have a flat, chiseled out stomach free from any bloating or distention that may be caused by consuming foods or liquids. As my doctor said this past week, it you drink or eat something, it has to go somewhere in your body (your stomach and intestines). Your body is going to make secretions. You're going to change in size regardless of your medical condition. Whenever I read about the models' pre-show regime, I was shocked. Why in the world would you want to refrain from drinking or eating to look that way? You know whenever they walk down the runway, that they have to feel somewhat weakened and possibly suffer from a dehydration headache. As GP patients, we have strict and limited diets and are often unable to eat. Why would you purposely want to do that to yourself in order to look better? I simply do not understand it. Society has placed such emphasis on our physical, outward appearance and less about what is on the inside. After reading and seriously thinking about it, why do I personally let the bloating get to me? It really isn't that big of a deal.


Monday, May 1, 2017

Upper Endoscopy with Botox Injection...

This coming Thursday, I will be having an upper endoscopy(EGD) with Botox which is medically known as an Esophagogastroduodenoscopy. I have had at least six of these procedures in the past and have found them to be beneficial.

Symptoms I experience when it is time for another round of Botox:
  • I experience pain and soreness in my upper abdominal area which is generally located at the top of my stomach right where my lower ribs are centered. It is especially noticeable when pressure is applied, like when I am nursing my daughter.
  • Whenever I just begin to eat, I will start experiencing stomach cramping and spasms. Since this has been something that I have dealt with over the years, I try to mentally remind myself what is going on physically with my body. The sudden fullness that I am feeling isn't because my body is no longer hungry, it is because of my pylorus not functioning as it should. The cramping and spasms are a result of that. I try to slow down my eating and chew my food better. It is not always a helpful and productive process. Sometimes I am unable to finish my "GP sized" meal so over time, if this continues, my weight will drop.
  • It is extremely rare for me to wake up during the night with any type of abdominal pain. (Intestinal pain is a different story.) When I am in need of another round of Botox, I will wake up during the night and experience upper abdominal cramping and spasms.

Results I experience after a round of Botox:
  • Usually within a few days to a week, I will notice a change in the frequency and intensity of the stomach cramping and spasms. The time frame varies with each procedure. Over time I am able to resume my normal diet and amount of food with no pain. 

What is an endoscopy with Botox injections?

An upper endoscopy (EGD) is a procedure that is often performed as an outpatient procedure. It is where an endoscopy of preformed and Botox injections are administered into the pylorus. It is the same idea as a having a pyloroplasty done, just less invasive.

Pyloroplasty: A surgery where the lower part of the stomach (pylorus) is widened to make it easier  for the contents of the stomach to pass through into the small intestines.

Botox Endoscopy: It is generally an outpatient procedure where an endoscopy is performed. The   Botox is administered into the pylorus (the lower part of the stomach). The Botox helps relax the pyloric muscle so food can empty easier.

Pylorus: The lower part of the stomach which is muscular and thick. If the pylorus is thicker, food   has a harder time passing through which could account for stomach cramping and spasms.

Prepping for an EGD with Botox:

At the hospital where I go to have my endoscopies, the general rule is that you are to be NPO (nothing by mouth) after midnight with the exception of the allowed and approved morning medications. With each patient, doctor and hospital, the exceptions will vary. However gastroparesis patients are different with their digestive processes and are often delayed. The hospital where I am going has GP patients be on a clear liquid diet for twenty-four hours prior to the procedure and be NPO (nothing by mouth) after midnight except for the allowed and approved morning medications.


As with any procedure there is the whole waiting process. Once you have been checked in, you will be taken back to a holding bay/room and prepped for the procedure. You will give a brief medical history, check off your medication list and go over any known allergies. After changing into a gown and those fashionable hospital socks, you will have a blood pressure cuff put on, have the leads to a heart monitor and an IV placed. I am always dehydrated and dry so it is always hard for the nurses to find a vein. 

There is a nurse who works in the endoscopy unit at the hospital where I go. Her bedside mannerism and nursing skills are amazing. Years ago when I was having one of my endoscopies, as always, my veins were being hard to find. If they found one, it was either too small or it blew. They called her into place my IV (which has happened several times since). As she was walking up, she starts telling me who I am. She knew what type patient that I was, the disease I had and who my doctor was and not because of my chart. She is that good of a nurse. Her skills are amazing! We need more nurses like that today.

The anesthesiologist and doctor who will be performing your endoscopy will come by and access you. When you are finally ready, they will take you back into the procedure room. Where I go, they generally go through the process one more time to make sure that I am who I am. You will lay on your side, get hooked up to the machines (oxygen in your nose along with blood pressure and heart monitors) and have a bite block placed in your mouth which is secured around your head. Once you are ready and everything is placed, the sedation medication is given.

One time, I had had some type of test before my endoscopy. I was in the room, hooked up, prepped and ready. Luckily for me, the sedation hadn't been given. It hit me, I had to go to the bathroom. It was the biggest ordeal and inconvenience to get everything unhook and reattached. The lesson in this story, use the bathroom before your procedure. It never hurts to try.

In the past, I have been given a combination of Fentanyl and Versed. Recently, I have been given Propofol. Personally I seem to wake up easier and quicker with the Propofol. I do not have the lasting drowsiness. Once sedated, the endoscopy scope is inserted through the bite guard by mouth through the esophagus and stomach into the pylorus. The Botox is administered here.

Post Procedure:

It is a quick procedure. Once you are back in the holding bay/room and awake, your doctor will come in and discuss the procedure with you and your designated driver. Afterwards, you will be discharged. As with any sedation, no driving is allowed. It is a day where you can lay around on the couch and watch tv without feeling guilty. Your throat may be a little sore from the scope. I have never had any issues with nausea after sedation. The success of Botox varies with each person. Some patients experience relief immediately while others do not. The effects of Botox usually last around four to six months for me personally.

As always, I am not a doctor. I am just sharing my past experiences with Botox. Each patient is different so the results will be different. 

Wednesday, April 26, 2017

easy, quick and safe GP foods...

As a gastroparesis (GP) patient and mommy of a very active toddler, some nights by the time dinner rolls around, I'm exhausted. My day may have consisted of cleaning out. I may have spent the day dealing with nausea or weakness. I may have spent the day just being a mom to my daughter and fulfilling those responsibilities. There is one thing about life with this disease, no two days are the same. Something is always changing.

Generally speaking at our house, two types of meals are usually fixed. My husband has "his food" and I eat my "GP friendly food". Our daughter's meal is usually a combination of the two of our meals. She's currently in her "toddler pickiness" phase which is perfectly okay. Regardless, she gets a variety of food options to help broaden her palette. Looking back over my life, I have come to realize that I wasted so much time being picky and close minded about food. If I could have one redo, it would be that, to be less picky and open to different foods.

Some nights when it is time for me to decide what I'm going to eat for dinner, well let's be honest; it is more like "What can my stomach handle tonight?" As I stated before, no two days are the same with GP. I have good days where my diet isn't so limited and other days where I can handle just a few types of food. On those rough days for me personally, it is about getting something into my stomach to help me get through the evening. I'm usually not looking for what is the healthiest option or most nutritious. I'm just looking for something that is easy and quick. It's real life and in the moment. We're all individuals who are in different places and situations in life. What works for you, may not work for me so let's please be opened minded.

MorningStar Farms Chik'N Nuggets

I am not able to properly digest chicken. It always gets stuck in my GI tract which results in it barely moving through. I discovered these vegetarian nuggets. I really like the taste of the Chik'N Nuggets especially when I use a type of sauce to dip them in. I have the option of baking them in the oven or putting them in the microwave. Either way, I feel like I am getting some type of "meat" with my meal without the repercussions of truly eating meat. MorningStar Farms offers a broad selection of meatless meal food options.

Uncle Ben's Ready Rice

I discovered this rice some time ago. It is really convenient to have on hand. I usually keep several backups in my pantry for whenever those rough days occur. It comes in a variety of 21 different flavors. My favorites are the Original and the Creamy Four Cheese. It only takes 90 seconds in the microwave to prepare. There are no preservatives in the rice so I feel comfortable about feeding it to my daughter.

For years now, whether it was during a flare up, after a surgery or after giving birth to my daughter, I would eat the takeout Japanese rice flavored with shrimp/Yum-Yum and soy sauces. It was one of my all time safe foods. It occurred to me one day to just use this Original rice along side of my sauces and I had QUICK and easy Japanese takeout rice without having to leave my house or exert a lot of time or energy. As we all know, some days you just have to conserve your energy.

$$ Here is a coupon I found on the company's website. $$
Who doesn't like saving money? 

Idahoan Fully Loaded Instant Potatoes: Buttery Delicious

I know, I know, instant mashed potatoes. Potato flakes! There is nothing when it comes to food that I love more than homemade mashed potatoes that have been boiled on the stove and whipped to rich, buttery perfection. However let's be real here for a moment. Some nights, I don't feel like waiting thirty to forty minutes for mashed potatoes, forget the energy that goes into peeling and preparing them. On those nights, I pull out these. They come in three different flavors but my favorite is the Buttery Delicious. They don't have the same taste and texture as my homemade mashed potatoes but they work on those nights. I usually dress them up by substituting the water for milk and adding some additional butter or cheese depending on my stomach and mood. After any GI tract related surgery, this is the first food that I go for, mashed potatoes. I know that regardless to what condition my stomach is in, I'm going to be okay eating mashed potatoes.

Campbell's Condensed Soup : Chicken and Stars

I absolutely love this soup. Personally I enjoy a thicker based soup so I don't add water to it like the directions say to. I just heat it in the microwave. I love anything that has salt in it so the saltiness of this soup is perfect for me. Whenever my intestines become inflamed and enlarged, I always eat the Chicken and Stars soup because the stars are already tiny so it just helps with digesting and moving throughout my intestines. The Campbell's soup brand offers a lot of different varieties of soup.

$$ Here is a link for a coupon that was found on the company's website. $$

So there are a few of my quick and easy go to foods that are safe foods for me to eat on those rough, real life days. I'd love to hear what some of your safe foods are!

Wednesday, April 19, 2017

Gastroparesis and Dehydration...

How many times as gastroparesis patients have we had to go either to the doctor's office or to the emergency room for an IV to combat a horrible bout of dehydration? I honestly could not tell you how many times this has happened to me. Over the years, it has gotten to the point where I would rather feel awful and be miserable and just tough it out on the couch then to go sit for hours while waiting for an IV to rehydrate me. It has always been a game of "what if" for me whenever I consider going to the ER. I am always double guessing myself.

  • Maybe I'll start to feel better soon.
  • Is it truly worth exposing myself to something else like the flu or a stomach bug?
  • What if the ER doctor has a horrible bedside mannerism and thinks that the GP is "just in my head" or that I'm seeking medical attention or better yet, prescription drugs.
  • How much is this ER visit going to cost?

The majority of the time, I will just stay home and sip on Gatorade. At times, I have been so weak that I could barely walk to the bathroom. I will experience blacking out episodes, increased pulse rates, nausea, passing out and let's not forget the dehydration headaches that last for DAYS. The whole experience is awful.

A company reached out to me (*see the disclaimer below*) and told me about their new product called Speedlyte. It is "A New Generation Oral Rehydration Solution". It was developed by a biotech company for people with severe dehydration issues. It is FDA approved and recognized by both Harvard University and the Massachusetts Institute of Technology (MIT). They sent some samples of their product. I was somewhat skeptical at first because I'm not a scientific person. I don't fully understand the science behind the Speedlyte solution. Speedlyte really does work. It is something that I am going to keep on hand and have readily available for whenever those rough, dehydrating days happen.

Currently it is only available in an orange flavor but more flavors are being developed. Personally, I was not a fan of the orange flavoring. The taste of Speedlyte kind of reminded me of a prescription colon prep or Miralax. It has a salty taste to it. Whenever I'm really dehydrated and miserable, I'm going to pretty much drink whatever. At times like that, suddenly I am not so picky. I just want to feel better. There are no artificial ingredients and it has 46% less sugar than the leading oral rehydrating solutions.

As always, discuss with your doctors what will work best for you before trying something new and different. Use your own discretion. After all, I'm not a doctor and we're all individuals who have different bodies and systems. What works for me, may not work for you. I have linked the company's website below with all of the information regarding Speedlyte. If you have any questions regarding their product, contact them and ask. Their customer service is great. You can contact them and they will send you some samples to try. Who doesn't like a sample?! I have also provided a couple of links where Speedlyte can be purchased.

I am not a doctor. I am a gastroparesis patient. This is not a sponsored post. I was not paid for my opinions on this product. Please use at your own discretion.

Thursday, April 13, 2017

Binge eating...?

Binge eating is a pattern of disordered eating which consists of episodes of uncontrollable eating. It is sometimes a symptom of binge eating disorder or compulsive overeating disorder. During such binges, a person rapidly consumes an excessive quantity of food. A diagnosis of binge eating is associated with feelings of loss of control.

How many times as gastroparesis patients have we felt that we have "binge ate"? To us the definition of binge eating is very different from the Wikipedia definition. I have discussed this numerous times over the years with my GI doctor. It is actually quite normal and nothing to be ashamed of. Each and every one of us have a different reason as to why we feel that we "binge eat". For me personally, I begin my day out with a small breakfast. I am not able to eat a normal sized breakfast due to my GI tract becoming so overwhelmed with that amount of food. To be honest, most mornings, I am still working on digesting my dinner. Anyway, it makes my medication less effective and I will feel the effects of that throughout the day. It simply is not a good combination so I try my best to avoid it.

I start my medication regime in the morning. Around two or three in the afternoon, I may have a few bites of a snack. It is mostly just to satisfy the need to chew something. If you've never experienced that, I realize how odd that sounds. By dinner time in the evening, I am usually pretty hungry. It all depends on how nauseous I am. I will eat a "GP sized" dinner and feel extremely full after eating it. Don't you just love the feeling of satiety? Your body feels full and satisfied before you're done eating your small meal but you're still hungry. It is one of the oddest feelings and sensations associated with gastroparesis. It took me a long time to understand exactly what was going on. I would feel full and have abdominal bloating and distention but I would still be hungry. 

After my daughter goes to bed at night, I consider this to be my "down time". I usually read, watch tv and eat a snack. Combine that snack with dinner, I usually go to bed feeling extremely full and bloated, almost to the point of being miserable and questioning why I "binge ate" that snack. However I'm still hungry. My GI doctor explained to me that basically I am just making up for not eating during the day. It is my body's way of catching up so to speak. So to all of us gastroparesis patients, we're not binge eating. We are just making up for those lost calories and nutrition.


Thursday, April 6, 2017

Spring Gastroparesis Favorites...

I love watching monthly favorite videos on Youtube. As all of us gastroparesis patients know, each day can be different with our digestive systems; what works today, may not work tomorrow. Our lives are filled with a lot of uncertainty when it comes to food and it can be frustrating at times. I thought I would share some of my favorites that have been working for me over the past month or so.

Tropicana Essentials Probiotic Juice - Peach Passion Fruit

I have always been an avid fruit lover but let's be honest here, most fruits are not "GP friendly". This has a wonderful fruity taste with no added sugar or artificial flavors. Did I mention that there are probiotics in the juice? I have been having trouble digesting my probiotic pill each day so by drinking this, I know that I am getting some amount of probiotics in my system each day.

Gatorade G Series Thirst Quencher - Strawberry Watermelon

I have not always liked the Gatorade taste. Over the years, I feel that my tastes have changed and I have actually grown to love Gatorade. I prefer the Gatorade G2 Series because it has a lower amount of sugar but the G2 Series does not offer a strawberry flavor and strawberry is my favorite flavor. We stumbled across this flavor, Strawberry Watermelon in the grocery store so I thought that I would try it. It was a hit! I love putting a bottle in the freezer, letting it get really cold almost to the point of becoming a slushie and drinking it. I find it to be really refreshing and replenishing after a long day of cleaning out.

Sensible Portions Garden Veggie Straws - Zesty Ranch

These taste amazing and do not leave me feeling full and bloated after eating them. Over the years as my diet has varied, whenever I would be on a strictly liquid diet, one thing that I always missed was crunchy foods. These Veggie Straws are crunchy and full flavored. I love ranch flavoring so these definitely satisfy my need for something crunchy and savory. They contain no artificial flavors or preservatives, are gluten free and non-GMO. Whenever my toddler asks for these (repeatedly), I feel good about giving them to her for her snack.

Chobani Flip Greek Yogurt - Key Lime Crumble

I saw a commercial advertising this exact flavor. Whenever I saw that there were little white chocolate chips in it, I was sold. I love white chocolate and prefer to eat it over milk or dark chocolate. For those of us white chocolate lovers, foods usually contain milk chocolate so whenever I see something that contains white chocolate, it usually comes home with me. I really enjoy eating Greek yogurt because of the added protein. This product itself has 12 grams of protein. Whenever I eat it, I feel as if I have enjoyed a full size piece of key lime pie but haven't consumed something that had no nutritional benefit.

Spring Baking Championship 2017 on The Food Network

Just because my diet is limited, it doesn't mean that I don't enjoy watching a good baking or cooking show. I love watching the bakers on the Spring Baking Championship create and bake these amazing little desserts with such flavor and detail. They almost look too good to eat.

Food Whore by Jessica Tom

Whenever I was pregnant, I discovered novels that pertained to foods and the restaurant life. I immediately fell in love with this category of books. I came across this book while searching for my next "Food Novel" to read. I thoroughly enjoyed reading this book. It is a light read but the food descriptions are so intricate and detailed. It was almost as if I was looking at the food myself.

Thursday, March 30, 2017

Types of ostomies...

For several years now, I have wanted to write about the various types of ostomies. There seems to be a lot of confusion and misconceptions out there regarding ostomies. Generally speaking, there are three types of ostomies.

Colostomy: A colostomy is where the colon is surgically diverted through the wall of the abdomen to create a stoma.

Ileostomy: An ileostomy is where the ileum, which is the lowest part of the small intestines, is surgically diverted through the wall of the abdomen to create a stoma.

Urostomy: A urostomy is where a stoma is created to help divert the drainage of the bladder and urethra.

There are different "subcategories" within the realm of ostomies such as J-pouches but today we are just talking about generalized ostomies. The reasons as to why a patient may need an ostomy vary. A patient may have a blockage or obstruction, cancer, GI conditions such as Crohn's, Diverticulitis and Irritable Bowel Disease (IBD), infection, an injury that resulted in the need for an ostomy or motility issues. The reasons are vast. Some ostomies are temporary while others are permanent. It just depends on the patient and the medical situation.

Monday, March 20, 2017

Looking back...

As human beings, when we mature and grow older, our outlook and perspectives change. Next month is my thirtieth birthday. As I look back over my twenties, I can see how I have grown and changed as a person. If someone would have told me what my twenties would entail, I would have never believed them and possibly questioned their sanity. This time of year always make me reflect on what I have been through with my gastroparesis. I am so thankful to be where I am today in life.

Years ago when I was in the process of preparing to have my colon removed, it took about six months for everything to fall into place. I had to have further GI testing, additional GI consults and opinions and a procedure done to rule out the diagnosis of Hirschsprung's Disease. During one of my GI appointments at Temple University Hospital in Philadelphia, I was seeing one of the nation's best GI doctors who specialized in motility disorders just like my local GI doctor. I remember conveying my wishes to him to have my colon removed and asking his opinion on the surgery. I explained to him that my local GI doctor recommended the surgery. Without the surgery, he didn't expect me to live to see my thirtieth birthday. Shockingly this GI doctor disagreed. He thought that the surgery was too big of a risk. The outcome would not justify the risk. I remember thinking that yes, medically he is qualified to tell me his opinion. He had devoted his life to medicine and studying how this disease "works" but he didn't know on a personal level what it was like to live with my disease every day. I wanted to live a long and full life.

Fast forward a couple of years and I was in the same situation again, needing an additional surgery to save my life, an ileostomy surgery. The day I met with my surgeon is a day that will I remember for the rest of my life. Originally I had went to my surgeon that day to see if he would remove the remaining eight inches of my colon that was a left as a hookup for my small intestines. He explained that by removing the remaining colon, he would be putting me at risk for obstructions and the possibility of my intestines "falling" which would cause a whole list of complications that could not be fixed. An ileostomy was my only surgical option at this point. My GI tract was delayed from the gastroparesis. There was no guarantee that an ileostomy would work. If this surgery failed then my GI tract would be considered to be "in failure" and a transplant would be my last option. The cleaning out regimes eventually would stop working. Transplants are not a fix all, end all solution. They come with their own set of complications.

After leaving that appointment, I realized how short life could really be. Things that I had wanted for years to have and be in life may not actually be possible or happen. The following few weeks were really hard for me. People my age were out pursuing their careers, getting married and having babies. I was at home cleaning out and picking out ostomy supplies. I honestly didn't think I'd ever get to be a parent.

As with all things, time does wonders to one's perspective. Over next few years, I grew as a person. I accepted my new "normal" and way of life. I grew to like and even appreciate my ileostomy. It had saved my life. The night before my ileostomy surgery, my body began shutting down. It was horrible. I have never been or felt so sick in my life nor wish to do so again. My parents explained to me later that their prayer was that I survived the night. Now as a parent myself, I can't imagine how hard that must have been on my parents to see their child in such a state. I can't imagine how hard it was for Jacob, my husband. I never would have imagined that four years post ileostomy, I would be married and have a nineteen month old daughter. My gastroparesis is still "there" and it still affects my daily life, nothing has changed. I still have to do my clean out regimes and watch what I eat. I am so thankful and appreciative to be here living the life that I do.