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.