Posts tagged Batch1
Gastroparesis: Trisha's Story

Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do.

My Gastroparesis Story

My name is Trisha and I am sharing my personal story to give you an inside look at what it's like living with this awful and misunderstood disease. I have had GI-related issues and numerous sporadic episodes of being unable to eat due to pain and nausea/vomiting for many years, but none of the episodes has been anywhere close to being as severe or long-lasting as the issue I have now.

In early February of 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally, due to severe abdominal pain, nausea, and vomiting. As I progressively got weaker and the symptoms increased, my doctor diagnosed me with possible diverticulitis. After a few trips to the ER, with little help and no real improvement, my family and I knew that this was not a stomach bug, so I decided to see a gastroenterologist for my issues.

My gastroenterologist ran a number of imaging tests, but could not find anything that would be causing my inability to intake any nutrition without pain, nausea, lack of appetite, and vomiting. After a couple of months went by and I continued to get weaker and lose weight, I was referred to a urologist and a gynecologist. Neither could come up with a reasonable diagnosis to explain my symptoms. I was referred to a surgeon for a diagnostic laparoscopy. I never made it to that appointment because my husband had had enough of me going from doctor to doctor with no results. I was not improving. Months had passed, and I was still unable to eat, vomiting or dry-heaving when anything went in my mouth, and in lots of pain.

So one morning, my husband drove me to UNC, where I was admitted for testing. I went home the following week on a liquids-only diet. I was unable to drink an adequate amount of fluids following hospital discharge and I became dehydrated. In addition, I was facing awful side effects from Reglan, the medication the doctors had put me on. I returned to UNC and was once again hospitalized.

I had to receive nutrition, and it was clear that I would not be getting it orally. In May 2013, I had to resort to having a GJ feeding tube placed in my small intestine, which I still have today. I have a machine that pumps formula into my body for at least 15 hours a day. I have to wear a backpack carrying this formula all day. At first, it was hard to accept, but my faith helped me gain peace, and I became comfortable with wearing the bag in public. (I admit a more comfortable and stylish bag did help some as well.) I have continued to have rough days but have been able to function "normally" on most days. Nevertheless, the past 6 months have been extremely difficult for me physically and emotionally, as my body has begun having trouble with tolerating enough calories via the tube. Surviving on less than 500 calories a day doesn't give me much energy at all.

I am a 5th grade Science/Social Studies teacher. I love teaching with a passion, and this year is my 15th year as an elementary teacher. However, due to illness and other hospitalizations, I have been unable to work. At first, I was angry and upset. I honestly thought that I was fulfilling my purpose by being a teacher and loving mother, so why was my body keeping me from being in the classroom? I questioned God's reasons for making me endure the pain and suffering of this debilitating disease. I honestly try my best to live my life with as much love, understanding, and patience as I can. With prayers and contemplation, I have come to believe there is another purpose for my life; at least I hope that's what it is.

Some doctors have me diagnosed as having “Gastroparesis” which means a “paralyzed stomach.”  I have learned that the majority of the public and even medical providers/physicians are not aware of this debilitating disease. Some doctors label me as having a “Functional GI Motility Disorder.” Regardless of the label, my life has drastically changed. Since my diagnosis, I have seen multiple doctors/nurses. I have had many return visits to the ER for dehydration, uncontrollable pain and nausea, and feeding tube issues. Every 3 months I have to return to Interventional Radiology and have my feeding tube replaced, sometimes even sooner if it clogs or falls out. I was an active parent, wife, daughter, and teacher before my illness. I was overweight, but otherwise healthy and felt great. Since getting sick, I have lost approximately 160 pounds, and on most days, especially recently, feel too awful to be active. My quality of life has diminished, but I will continue to fight to get it back.

At first, I felt strong and brave, thinking I could live my life the same as always.  I would just have a different way of receiving my nutrition. Instead of eating, I would tube feed. To begin with, I tried feeding at night so that I could feel and look "normal" during the day. But I was not "normal" anymore. I was struggling to get through my day at work, just to come home and crash with my family. I gave up trying to hide my illness, and decided to begin wearing my backpack during the day to run my feeds in hopes that my energy would improve. I wear my backpack all day, regardless of whether I am working, grocery shopping, or going to a doctor's visit.

Although I love my teaching career, I am currently on medical leave because my body cannot keep up with my physical demands. I am praying to regain my strength and get my symptoms under control so I can return to teaching soon, as I miss it greatly. I was hospitalized this past October (2014) for almost 2 weeks because my body couldn’t even handle the formula that I was trying to send through my GJ tube. In December (2014), I had my gallbladder removed, and since then, I have been trying to increase my feeds so I can function and regain my strength. I am currently surviving on less than 700 calories (tube fed) a day.

I despise how this disease makes me feel guilty over missing family events and not being able to attend some of my children’s activities. I hate not being able to easily go out to eat, to sporting events, camping, vacations, or any of the other things I enjoyed prior to my illness. I am young and should have lots of life ahead of me, but instead I am struggling to find a cure or treatment that can allow me to actively live again. It's hard to fathom that there is not a cure for gastroparesis/FGIMD and that I may have to deal with feeling like this for the remainder of my life.

Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do.

I am angry at times. My insurance will not cover my formula that is required for me to survive and puts hurdles in my way before covering certain treatment options. Sometimes when I see a new doctor or nurse, I have to TEACH THEM what is wrong with me, what kind of medications I need that work, and which medications I have to stay away from. I am heartbroken when I make some exciting plans with the family, but then I have to cancel because of being sick. I want MY LIFE back!

I have been blessed, though, with receiving help and support from those around me. I am fortunate to have found a wonderful gastroenterologist who actually listens, seems to genuinely care, and attempts to help me manage my symptoms. Additionally, I am appreciative of the support I receive from my ever-growing GP community.

I am a firm believer that everything happens for a reason. I have faith. Through this storm, a wonderful bond was formed with two of my fellow GP warriors. We are using social media and our advocacy group to create web pages, community pages, Twitter movements, gastroparesis-related events, letter writing campaigns to elected officials, the media, and medical providers.  We are writing and distributing petitions, making awareness videos, creating fundraisers, and participating in all sorts of other activities to support the GP community. We have formed a magnificent team. I have come to realize and accept that God has set forth this path for me. I HATE GASTROPARESIS!  It has been a thorn in my side, but I am finding my way.

Gastroparesis: Brittney's Story

It is really scary having a disease that even medical providers do not know exists.

A Day in the Life with GP

It is 1:30 in the morning.  The monster that dwells within my stomach wakes me from another nightmare.  As I sit up, the intense nausea practically brings me to my knees. I am dry heaving. Some people compare this to having the flu.  In my experience, gastroparesis (GP) makes having the flu look like a walk in the park. What I am going through is worse than any hangover I have ever had or the time I got food poisoning. I take a Zofran for the nausea, and I relocate to the recliner so I can sit up.

The minutes seem like hours. Time passes by so slowly. It is now 4:30 a.m. I have been sitting in the chair unable to go back to sleep. I am having anxiety. The stress this sickness causes is indescribable. I am also very depressed. At times I have thought about suicide, but so far I have not acted on those thoughts. When I am in a flare (that is when my symptoms are worse than usual,) I become very scared and confused. My mother calls it crossing over to the dark side. My thinking is negative and irrational. I want to die. The psychological aspects of this disease are almost as bad as the physical, and they do feed off each other. Even though I see a therapist and take an antidepressant, my mind has turned into my own worst enemy thanks to GP. Whenever I can sleep, GP haunts me in my dreams. I never really can escape.  It is relentless, and I suffer 24/7/365.

It’s around 5:30 a.m., and the worst part of the sickness is starting to pass. As my old Dell Desktop is booting up, I have to go to the bathroom. I praise God the laxatives have worked. When I first got sick I suffered from chronic diarrhea.  It was so bad I spent a good portion of my time on the pot. I have had my share of accidents in the bed and in my pants. That has to be one of the most demeaning feelings I have ever experienced in my life. I don’t have to worry about that anymore, though, because with all the medications I take, I now suffer from the opposite problem. Sometimes I go for days without going. When I finally do have a bowel movement, it is extremely painful. I am usually impacted and the feces must be digitally removed, which makes me bleed from my rectum. That entire experience is physically and emotionally brutal. Who knew a simple bodily function could be such a traumatic ordeal?

It just took everything I had in me to feed my cats. I feel bad for my pets. I can hardly care for them anymore. My mother usually has to remind me to feed them. I never talk to them or play with them nowadays. I just don’t feel well enough to participate in those types of activities anymore. Those are the kind of things I used to love. GP has truly touched every area of my life.

I am weak and shaking. I can hardly think straight as I sit down at my computer. I am so cold. For some reason I am always so cold. I turn on the heating pad and pile the blankets up over me. I live in Arizona, where it is over seventy degrees outside right now, and I am still freezing! I can’t even begin to imagine living in a cold weather climate with a diagnosis of GP.

Shivering, I log onto Facebook. Last April I took a turn for the worse and ended up with a flare that lasted months. I was so sick I could not leave the house. All I could do was sit at the computer. I ended up meeting other people online just like me, who also suffer from GP. That is one of the only good things I have gotten from this horrid disease. I have made many great friends that mean the world to me, even though I have never met them personally.  I also found many support groups where these same people shared their experience, strength, and hope with me. I have read GP only affects about 5 million people, and the medical community does not know much about it. In fact, the ER staff had to Google search “gastroparesis” upon my last admit. They had never heard of it. Neither had I before I got the diagnosis. It is really scary having a disease that even medical providers do not know exists. My regular GI doctor has only had three people in his entire career with GP. His other two patients are diabetic. I am the only person he has ever treated who is “idiopathic” (which means they do not know what caused the GP).  So, the GP community on Facebook has taught me more about this disease than any doctor has – and more than what I have been able to read about on the Internet.

Facebook is also how I socialize.  Since I am always sick, many of my “friends” no longer have anything to do with me. It is hard to make plans to go out when I never know how I am going to feel. Half the time I end up having to cancel.  I have all but given up hope of ever finding a potential mate who will accept me being sick. I have no sex life at all. I am so very lonely.

However, I am fortunate to have my family by my side. I had to go home to live at my parents’ house about a year ago because my symptoms became so bad I could no longer work. I ended up losing my apartment and everything in it. I filed for disability and got denied. I have appealed that decision. Who knows how long it will take before I am approved? In the meantime, I am flat broke, and I am on public assistance. Twice in the last few months they have told me my medical insurance has been cut off.  Both times were apparent mistakes, but do you know how upsetting that was? I have never been so afraid in my life. I really wish I could work and be self-supporting; relying on the government is really unreliable.

Okay, I have taken my morning meds, and I ate breakfast.  My breakfast is the same every day: one Activia yogurt. Since I got diagnosed, I have been on the GP friendly diet. I can no longer eat the things I love. The diet is very restrictive. Following the diet has helped decrease the violent vomiting, but I have developed a fear of food. To be honest, I only have about 10 different “safe foods.” Since I am always sick, I don’t really consider them “safe foods.” At any rate, I am terrified of eating anything new or different outside of those 10 things. I have lost a little over 80 pounds since I have been diagnosed with GP. I do not go out to eat at restaurants anymore. When I first got sick, just looking at all the food on the menu and seeing what the other customers were eating was more than I could take. The smells of all of that food made me even more nauseated. I hate getting sick in public so I just don’t dine out. Even watching television is rough. All those commercials with all that yummy food I can’t have really messes with me sometimes.

Then there are the holidays! I usually become very depressed during what is supposed to be a happy time. In America, our holidays are all centered on food. Hell, I can’t even have cake on my birthday anymore. The last time I did that, I wound up in the emergency room. It is really tough, but at least I can still eat. Many people with GP rely on tube feeds and TPN for their nutrition. I struggle with maintaining my weight, malnutrition, and dehydration on a continual basis.

It is now about 9:00 in the morning. My 70 year old caregiver is awake. My mom has become my caregiver. It makes me feel so bad knowing that I should be the one taking care of her. I also wonder what will happen to me when something happens to her. Right now, I do not have the finances or physical and mental well-being to take care of myself. My future does not look too bright, does it?  In the meantime, watching me get sicker and sicker is killing my family.  My four year old grandson does not understand why I can’t play with him for more than a few minutes at a time. That kills me.

Now it is time to get dressed. I mostly wear baggy sweat pants as I can’t stand to have anything restrictive around my tummy.  It takes all of my energy to stand in the shower. I did not shave my legs all winter long. I only wear makeup on special occasions, which is pretty much never anymore. I have not had my hair done in about two years. I was a real girly-girl before I got sick. I was never without hair and makeup. I always wore a dress and high heels. GP has robbed me of my femininity, my sexuality, and my self esteem.

From about 3:00 in the afternoon until I go to bed is usually the best time of day for me. On a good day, I will usually try to do something around the house. It has become increasingly challenging to clean and do my laundry. This is also the time of day when I try to arrange my doctor’s appointments. I am too sick to go in mornings. Can you imagine being too sick to go to the doctor? Can you imagine the doctor’s office being the only place you ever really go?

Now it is dinner time. Just recently, I had to go to liquids only for dinner. It is so hard to watch everyone else eat a burger and fries while I get broth or a nutritional shake. After dinner I try to walk around the block. Remember, I have little energy, but I do believe this little bit of activity helps with motility. I watch television for the remainder of my day.

It is now about 8:00 in the evening. I take my laxative and hope for gentle overnight relief. I fill up my pill cups for the next day. I take so many different medications now that I have to place them in cups, so I can keep track of whether I have taken them or not. I have forgotten to take them, or have taken too many on occasion, and this has led to problems.

There are very few medications available to treat GP. When I first got diagnosed, I was on Reglan. That medicine has a black box warning. I started having side effects that are now permanent. Now I take Domperidone.  It also has serious potential side effects, and I have to get regular EKGs.  Dom is not approved for use in the United States. I have to order it online from Canada. It takes about ten to thirty days to receive. One of my biggest fears is that I will not receive my medication on time. I get very sick within a day of not taking the medication. I also fear the day it stops working.

Currently, I am seeing a motility specialist at Mayo Clinic. There are not many treatment options available for me. I am going to start alternative therapies. I see a chiropractor next week and I hope to see an acupuncturist and Chinese herbal medicine doctor in the near future. I am also going to be checking into Botox injections and a Medtronic stimulator. As I mentioned, I have no money, and I do not think my insurance will cover those procedures, but I am still going to look into it. At this point, I am desperate to feel better, and I am willing to try just about anything.

I go to bed at around 9:00 p.m. This is when I pray. My faith in God is what gets me through the hell I endure every day. So, I hope and pray for a good night’s rest without nightmares.  Then the monster that dwells within wakes me about one o’clock in the morning to rear its ugly head again…

Gastroparesis: Regina's Story

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Hi, I am Regina. I am 50 years old. My story begins January 28, 2008, with a middle of the night trip to the emergency room for uncontrollable abdominal pain and vomiting. Let me first say that prior to this date, I was a pretty healthy woman, working two jobs and traveling a lot for work. On this dreadful night in 2008, I was so sick I had to go to the ER. I had no idea what was going on, but they ran some tests and said my gallbladder was filled with stones and sludge and therefore had to be removed. I arrived at the ER at 4:30 a.m. and was in surgery by 9:00 a.m. I awoke in recovery in severe pain and figured this was normal post-surgery pain. But the pain continued, even after receiving pain medications.

By day two, I was vomiting again and could not stop. I could not eat or drink. By day five, they had me somewhat under control and discharged me with paperwork describing a diet to follow after gallbladder removal. The next few months consisted of weekly trips to the ER for pain and vomiting, as well as several more hospitalizations and tests in an effort to figure out why I was still in this condition. By May, I was unable to work consistently and decided to go on short-term disability until they could find a way to cure this problem.

Then a gastroenterologist at the local hospital suggested that perhaps I see another gastroenterologist at UPENN or Temple University, as he thought that perhaps I could have gastroparesis as a result of the surgery. I did my research (as I worked in the healthcare field as a Fraud Investigator for a major insurance company), and determined that the best place to go would be Temple, as they had a section of the GI department which was dedicated to gastroparesis. I made an appointment to see the head gastroenterologist there, Dr. Parkman, but before I could get to that appointment, I was hospitalized again locally. Eventually, I was transferred to Temple. They kept me in Temple for almost a month, running every test I had never heard of, and by the end of that hospitalization, they told me I had severe gastroparesis.  My Gastric Emptying Study showed 96% retention after four hours. In August of that year, I had surgery for a Gastric Stimulator.

The stimulator helped me only a little. I continued to have repeated hospitalizations over the next few years, and my condition only worsened. By Feb 2011, I had gone from a physically active, 165 pound, athletic woman to a 90 pound version of who I used to be. During one hospitalization, they refused to discharge me until I agreed to let them insert a g-tube and a j-tube so that they could put me on tube feedings and keep me from becoming malnourished and losing more weight. I now weigh about 120 pounds, but I continue to suffer from near constant abdominal pain and intractable vomiting. I am still hospitalized multiple times a year and have had several different types of procedures and surgeries, including Botox injections.

To this day, I am nowhere close to the normal woman I used to be. She is long gone. I am now a weak, somewhat feeble woman who often needs to use a wheelchair to get around, as I sometimes do not even have the strength to walk around my apartment. They say that there are no more answers for me at this point in time and I just need to accept my condition. I am fifty years old, and I am limited as to what I can do. I am restricted to a full liquid diet, and every time I eat, I end up in the ER within hours or days. I cannot be around sick people at all, or I will get sicker than sick, and inevitably, I end up with an infection ten times worse than what I was exposed to. I have had multiple instances of MRSA and other staph infections that have put me in the hospital, and even nursing homes, for months at a time.

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Despite the difficulties associated with my gastroparesis, there are several things I have learned about myself and about my life since my diagnosis. I was always a very career oriented person and my job was my life. I loved the travel that came with the job, and after being diagnosed, I did not know how to define myself as a disabled, non-working person. But what I learned over time is that my job did not define me and neither does my illness. I may not be able to help others in the same manner I did while working, but by being a part of the support groups I am in, I am now able to help others in a different way. I believe that my God uses me to help others through my life experience. I can help people who are newly diagnosed by assuring them that gastroparesis is not a death sentence; rather, it is another obstacle that I can overcome and that teaches me I am stronger than what life throws at me. I have made several wonderful friendships with men and women from all over the globe. And though I have never met these people, we help each other tremendously on a daily basis. We band together to try to create awareness and change for the way the medical world handles our illness. There is still so much to learn about gastroparesis, and if I can be even one single voice that is heard in the world of this devastating illness, then I can turn the negative into a positive and perhaps help others who are diagnosed in the future.