Anonymous Story About Gastroparesis

This story was emailed to me and I wanted to share it, because I want people to know:


A. They are not alone

B. Everyone’s GP is different

C. Your story matters

 
 

My Gastroparesis Story

I am 40 years old and diagnosed with gastroparesis at age of 34. I am short in statue and 75lbs overweight.

I wanted to share my story as I never heard of gastroparesis until I was diagnosed with it 6yrs ago.

In 2013 I kept feeling sick as I wanted to throw up all the time as I felt like I had a rotted gut. I had horrible sulfur burps and oh-man did they stink. It was embarrassing to go anywhere with them. I finally was tired feeling so miserable I went to the ER, they did a CT scan and said my intestine was twisted. I went into surgery that day for a laparoscopic surgery. They found that my intestine was not twisted, but they did remove some scar tissue. I am not aware of where the scar tissue was.

After I had the surgery I started to have severe back pain on the right side and it’s still there today. About after a week of having surgery all my symptoms came back. My primary doctor had me go and have an upper endoscopy procedure. After the procedure I met with the GI and his findings was I have gastroparesis. He said for me to be on a low fat, carb, fiber diet. To not eat lettuce as it is the hardest to digest and to either drink smoothies or purée my foods.

No other information I was given as far as what I can or not eat.

I went online to see what foods are simple to digest as my stomach would take a 2+ days to fully digest.  I did good for a little bit with the change in diet, then started to have issues with keeping food down or I would wake up jumping out of bed before aspirating. (Hate that acid burning in the throat). Luckily enough my body feels it coming to wake me up so I don’t choke or it going back into my lungs.

I went back to the ER as I was not feeling good again and my stomach was extended and very tender. The general surgeon gave me some Reglan to help empty my stomach for a week until I went back in for another endoscopy procedure. This time I didn’t eat hardly anything for 2 days before the procedure, when they where finishing up and pulling the camera out I had aspirated. I had no idea when I woke up I was wet, coughing, and shaking.

I started to have sudo seizures, next thing I knew I woke up in ICU in another hospital about 60 miles from the one I originally was in. The general surgeon confirmed my gastroparesis was causing the stomach pain and swelling. After I was in ICU, my primary doctor said not to take Reglan as it can cause seizures and we don’t know why I had the seizures in the first place. All the Nero test came back normal, so it was determined by a Neurologist doctor that they are Sudo. 

My primary doctor then prescribed me with linzess, which helped. It wasn’t ideal for the gastroparesis, but it was a shot in the dark. Over the past couple of years I have paid attention when my gastroparesis is giving me trouble to make adjustments in my diet. The week I have ovulating I have to be careful of what I eat. I will get migraines and nauseous along with my gastroparesis acting up. The gastroparesis also acts up right before and beginning of my menstrual cycle. None of my doctors know why I have gastroparesis as I do have type 2 diabetes, but it’s managed. I do have polycystic ovary syndrome.

I believe my gastroparesis is caused by hormone imbalance, but my doctors just shrug it off like I am crazy.  I was referred to a surgeon regarding the gastroparesis and I was told by the surgeon the only way to fix gastroparesis is by gastric bypass, since it creates a new hormone within the new stomach. I did have my gallbladder removed in Nov 2009.

Last April 2018 I started sleeping with oxygen as my oxygen levels dropped significantly during sleep. I use mouth devices for mild sleep apnea. Which some doctors don’t get that sleeping with a mask on (sleep apnea machine) and you have jump out of bed because you vomit in your mouth doesn’t work.  However my SO2 drops so I need oxygen. I had Pulmonary Function Test done in September and found my lungs are being restricted. Not sure of the reason yet, I have noticed over the last few months when I eat my SO2 drops. Not sure if it’s because of the gastroparesis causing my stomach to bloat compressing on my lungs. I will be having another PFT test in a couple more months.

Angelina's Story of Hope

It’s a Very Beautiful Storm

By: Angelina

    Gastric Motility and My Experiences as a Medically Complex Patient


Being sick is what you make of it. And I want you to know that no matter what life throws at me, I’m still going to do something amazing. Chronic illness doesn’t define me, and it shouldn’t define you. I’m not going to live my life in survival mode. I want to take good care of myself, so that I can live with my illness and with my passions.


I first confronted my illness in 2007. I was a high achiever. I’ve always been known for my drive. I was in high school and I was captain of the soccer team. I played varsity. I was in constant motion. But all of a sudden, I stopped being able to stand up without being in constant pain. My illness was initially misdiagnosed at a hospital in Rhode Island. Misdiagnosis hurts you, the patient. It doesn’t hurt the care team. Eventually, though, I connected with my current doctor, Dr. Flores. The other doctors had initially told me that I was just stressed out, or that my condition was connected to IBS—Irritable Bowel Syndrome. They just fed me laxatives and made the problem worse.


Dr. Flores could tell that it wasn’t IBS, especially after he did a colonic motility study. That’s where they track 8 segments of your colon with sensors, and they watch your colon. I’ll never forget the day that he walked into my room holding a doll in his hand. The doll had a tube in its stomach. “We have two options,” he said. “We take out your entire colon, or we do a test trial with a cecostomy.” I opted for a button, not the tube. I remember telling him: “I’m too young to have my whole colon taken out.”


Dr. Flores worked with a smaller local hospital at the time. This was before he had begun working at Boston Children’s and I transferred my care. At that hospital, there were so many complications that arose even before I received the button, like when I contracted MRSA from one of my sutures. I remember the day that I initially went into surgery, and feeling that God was with me. I remember praying and praying to just wake up alive.

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Dr. Flores has always listened to me, but I’ve been in medical situations where I felt like my voice as a patient just didn’t matter at all—like no one listened. My voice only mattered to my mom. Since I’ve been here, at Boston Children’s, my voice matters. And now that I finally have the test results and the data to back up my voice, it drives my point home.


My care team at Boston Children’s knows me. Some of my doctors and nurses can read me so well, I don’t even have to say a thing for them to see that I’m in pain—they’re just another layer of my support system. Dr. Flores, Kate, Jenny the nurse…they all know me so deeply at this point, and they can anticipate my needs. Jenny uses the expression “daughter-mama”, and she really treats me like family. Some days she’ll come in, and she’ll say something like: “We’re gonna sit together, and we’re gonna cry together.” She can tell when I’m in pain, and I’m in pain right now. It’s a very beautiful storm. And sometimes the storm gets worse before it gets better. So you have to adapt, you have to reframe and shift the way that you think about it. I don’t lie to myself. I know pain, and pain demands to be felt. Pain isn’t made to last forever. You either tolerate it, or it’ll go away.


Honestly, some days are hard. One of the things that’s been hardest about the process is the grief I’ve felt around my identity—some of the things and people I’ve lost, even when the loss was ultimately a good thing. The ways that my identity has had to shift over time. I remember the first time that diagnosis really hit me hard, and how just thinking forward was so difficult. I remember wondering what’s my life going to look like, and I’m living with this for the rest of my life. I also remember thinking about how no one else in my family had ever dealt with anything even close to this before. My mom was always my rock, my support, but she had to cry—and she would. She’d let go, because she had to. I have something like 14 different diagnoses at this point, and when I’d get every single one of those diagnoses, my mom would be the one to start bawling. I’d let myself bawl after, but her tears had to come first.


At the end of the day, you have to be your own hero. My parents have been there for me a lot throughout the hospitalization experience. But I’ve had a lot of nights when I’ve slept here, alone, with no parents. Even back when I was a young child, my mom came here as much as she possibly could, but she couldn’t reasonably be expected to be here all of the time. When you’re a chronic and medically complex patient in the hospital, don’t expect someone to constantly be there for you—because they do have to care for themselves too. I have to let myself accept that it’s okay to not be okay, with or without my support system. Sometimes, I’d literally get down and depressed and I’d think: “I’m weak, I’m not as strong as I could be,” but my life isn’t as bad as all that.


One thing I’d want other chronic patients to know is that, really, it’s okay to not be okay. You have to grieve, you deserve to grieve, you have to move through some of the toughest emotions in order to get to some of the better, even the best, emotions. I got to a place where I thought I was so much better. After 12 years of treatment, I thought everything was over, and I thought I was better, when in fact I was worse than ever before. At the time, I just couldn’t look at it that way. I’ve experienced the feeling of needing to be around more people to not feel quite so alone, or the feeling of needing to always do something to keep busy. In the end, though,  I really do think that we have to be our own heroes, especially in this situation. It doesn’t matter how many times you fall, you just have to keep getting back up. You need yourself more than anyone else. My physical scars ultimately motivate me, because they give others hope. In the end, I’m not a survivor, I’m a fighter.


If I hadn’t gotten sick, I don’t think I’d know my own passion. There was a period when it seemed like I was getting better, and I went into the business world. I built an entire business in New York, and then I took it out to California and moved on to San Diego, and then eventually to Los Angeles. I had such ambition and such drive—within my work, I’d first partnered up with a broker. But when I saw the value that I had at work, and how seriously others took me, I knew I wanted to be in business without a broker, and that I could fend for myself—that my work was valued. In late summer of the year that my business ventures were really taking off, but my health began to decline, and I was in denial. I didn’t want to believe that I was sick, and didn’t want to come all the way back to the east coast, but something in me knew that I really needed to check in with Dr. Flores. Once I returned to the east coast, and once I left the business world, things just kept on coming up that wouldn’t let me return to California. Then, Dr. Flores officially recommended that I not go back to the west coast. That was in August of 2018. I’ve been here at Boston Children’s, ever since, for weeks at a time. In the time that’s passed, I’ve found out that there’s no cure for my condition. It’s something that resides in your muscles.


I fought so hard not to be sick again, not to succumb to this, but I still feel like I lost everything. I feel like the same person, at heart, but there’s that identity that I lost in the process: the businesswoman. For me, honestly, business was never about money itself. It was about setting attainable goals. Like getting my mom into a good, comfortable and beautiful home. Before I fell into getting sick again, I never once wore sweatpants. I always wore heels, a suit, professional attire—I was interviewed by the news, out in California, to speak about my role within the business world. The thing is, in the end, I let appearance and wealth come before my health. I had been pushing and pushing myself, striving so hard to reclaim all of the time that I’d lost back when I was in-patient, within the hospital setting. All of it came around, full circle. And being sick again has taught me so much. It’s a genuinely humbling experience. I don’t eat by mouth any more; I live off of a small plastic bag, 20 hours a day. I went from being a Lady Boss in my power suit to being a person who has trouble just putting clothes on in the morning, every morning. The thing that you have to understand is that just because I was doing well during that period of my life, when I was a business woman? That doesn’t mean that I was healthy. My mom literally turned to me, this past fall, and she said: “Do you know, there’s a chance you won’t make it.”


My journey is literally a beautiful disaster of a journey. Did it piss me off, at 23, that my mom finally admitted that I might not make it? I’m just learning now. I don’t know. Sometimes, I get exhausted pretending to be stronger than I actually am—but then, I realize that it’s okay if I have to stop sometimes to pick myself back up. Ultimately, you have to realize that you can never do anything without your health, or without hope. But being weak doesn’t define you, and illness doesn’t define you. Sometimes, I forget the value and the purpose that I have for others. But I can’t. I have to be the one whose voice lifts up others. Can I know that I’m going to get out of bed in the morning? Can I really know that I’m going to be able to hold myself together mentally or physically—no matter what I might look like to others? Honestly, if you’re sick, you’re sick—and you can’t change it or control it, and certainly can’t blame yourself for being sick, which I was doing for so long. In my diary, I once wrote about that whole To Kill a Mockingbird thing…and how that, unless you walk an inch in someone else’s shoes, you just can’t possibly expect that they’ll understand or appreciate your perspective. Sometimes, I break down, and I have to break down, for 5 minutes, 10 minutes, 15 minutes. But I don’t stay down. It’s all part of grief and grieving. The thing that you have to remember, you always have to remember, is that the identity you once lost isn’t nearly as big—or as meaningful—as the one that’s coming for you.


I first began thinking about how to give back when I was younger. For awhile, I wanted to be a doctor—to give mental and spiritual help, and hope, to others. When I thought about other children and young adults with complex medical conditions, I wanted to be the person I’d needed back when I was 10, 11, 12 years old…the person who was so scared inside. My path shifted, and I’ve been in the business world for some time, but I’m still striving to find a way to change the culture of childhood illness. I’ve started a nonprofit to support children with complex and chronic illnesses, because kids need to understand that illness doesn’t define you. It doesn’t define me. It doesn’t change my character, and none of it is my fault somehow. I’m still me. I’m still Angelina. I’m still a person, and I don’t want sympathy or to be left out. Sometimes I have to take it easy, but so what? I want for other kids to know that sometimes, the battle doesn’t end, but you can still be victorious through your fight—and just because you need to cry, it doesn’t mean you’re weak. You’re brave; you just have to keep pushing. It’s not easy being sick, and it’s not a path that you chose—but it’s beyond your control.

I know that my scars give hope to others. I once asked my nurse, Jenny, what makes her believe in me the way that she does. She said: “You never quit. You always take on challenges, even in the face of pain.” During the toughest hours, the most difficult days, I can push through…armed with the knowledge that I can be a voice for someone who doesn’t have one, that I can throw light on a dark situation. I know I’m going to change the world. One day at a time, one person at a time.

Kerri's Story

My good friend Kerri Laman passed away day before yesterday. She was only 40 years old. She used study Human Development and Family Studies at Colorado State University, with degrees for the Deaf and Blind to help them. I feel like I've lost too many friends over the year.

This is going to be long but a mutual friend wrote this and I thought it summed up how I feel:

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"She didn't have to die yet, the state of medical care in this country killed her. Kerri and I originally met on a service dog forum many years ago. She was an amazingly talented person as well as selfless and with a childlike innocence and sincerity. She trained her own seeing eye dog! Those in the SD community understand how difficult and special that is. When she needed more mobility assistance she was unable to get another guide from an organization.

Kerri's medical care was complex due to the multiple disorders she had and especially by her blindness. She was dependent upon a form of IV nutrition called tpn to live and many IV medications. Being blind obviously complicated this and she relied on a home health nurse to come daily and set things up for her to be able to use safely and continue to live independently. She struggled with frequent hospitalizations due to life threatening infections. At her last one it was determined she was no longer able to live at home alone. She would need to find a skilled nursing home to be discharged from the hospital. That discharge never happened, after being turned away from 51 different skilled nursing homes. They refused to take her in due to her tpn requirements. Insurance didn't allow for any further assistance in her home than she was already receiving. Kerri had many friends both online and in her assisted living apartment complex. She continued to work from home for jamberry until not too long ago. In her younger years she was a competitive ice skater despite the blindness. Had also recently been correctly dx with conditions that explained symptoms and complications she'd experienced for MANY years and started treatment. (it takes way too long to receive correct dx). Now we will never know how much function she could have gained back. Especially improvement of the immune system to prevent the frequent life threatening infections.

Due to the inability to find medical care in the form of a safe place to live, she made the only choice she had which was to die. It didn't have to be this way. She decided upon the next infection she would not treat it. That was taking too long, and she began to discontinue treatments that sustain life such as the tpn and iv hydration (she was completely unable to use her gastrointestinal tract.) She has now passed on.

We need to improve the medical options available for complex patients. We need to improve insurance so people can receive the care they need. We need to stop the incentives for Dr's to refuse care (for fear of litigation and punishment from the government. Today in medicine it's safer for Dr's to walk away from complex patients than open themselves up to the risk, something I've experienced myself as well.) We need to incentivise medical professionals to provide the best treatment they're able.

We need to improve. We need to change. We need to save the Kerri's of the world, allow them to live as long as possible to contribute to the world. No one should die simply because people weren't willing to TRY. She didn't die because her condition got worse. Not because there were no treatments available. She didn't die waiting for a medical breakthrough. (though one that could have cured some of her conditions instead of maintaining them is a future goal!) She died simply because no one was willing to provide what she needed and was available. She had so much more to give the world. She is survived by family- including her amazing Labrador guide and mobility assistance service dog Sophie as well as her daschund Mandy."

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GP Stories Request

I want to ask you, the reader and/or GP Warrior, to share your Gastroparesis stories so that I am able to add them to my website to share them with the world.  Each person is different, so I am curious about your GP stories.  Will they show we are alike in some aspects?  Will there be no pattern at all and we will all be completely different?  How do your experiences with GP differ from mine?  I'm not the only one with these questions.

Also, I wanted to ask, what gives you hope to keep fighting GP?  I want people to read your story and what gives you hope in order to give them hope to keep fighting.  We all get discouraged at some point, but I'm hoping that through my website, you can help those who may need it most through your stories.  I hope these stories will lift your voices up and spread awareness of GP for a cure.

To share your story, please send a PM to www.facecbook.com/emilysstomach  or email me at: emilysstomach@gmail.com. I'd really like to share them.  I will be glad to change names if need be and I will protect your privacy.  Just let me know which preference you have when you contact me.

 

 

A green rose to all who are currently fighting Gastroparesis.

A green rose to all who are currently fighting Gastroparesis.

Jordan's Story of Hope

Jordan’s Story of Hope:

 

Her mother Michele writes, “My daughter, Jordan, is 29 & has had severe GP for 1 year. She has lost 55 lbs. We would both love it if you would include her pic on the website. It would make her feel so special. She is really struggling right now. Jordan & I read your Facebook page daily for inspiration. God bless you for putting all of us in touch on Facebook.”

Let’s lift Jordan up and give her her hope back.

 

Photo of Jordan Brooks, 2013.

Photo of Jordan Brooks, 2013.

Trish's Story of Hope

Trish’s Story of Hope

Written By: Trish

 

My name is Trish Rhodes and one day back in April 2011 I woke up one day with nausea and constipation. So went to work and it was awful the whole day. That weekend I was so sick, I had started vomiting, major stomach pains and slept most of that weekend. So I went to the doctor that following week, then the tests began. I did a CT scan of abdomen area, MRI of bile ducts, EGD, MRCP, many blood tests. All tests came back normal. This was hard to take so I went back to my GI doctor and it seemed like he had given up on me. So I went to my PCP and told him how I felt about the GI doctor and previously I had done some research and came across the GES test. So got that scheduled and it came back abnormal. Finally I knew an answer. But I sure didn't know the extent of this awful condition. My GI doctor was no help so I fired him and got referred to another one 2 hours away.

 

I would say about a year later I went to this 2nd GI doctor and I like him, he spent the time to talk to me about how I was feeling, what I was eating, my weight, etc etc. Then he wanted more tests. Blood tests, Colonscopy, another GES. Everything was good besides the GES. So that was hard hearing that information again for some reason. So then I dont hear from this doctor for almost a year and finally schedule another appointment which I think are pointless because these doctors are no help whatsoever! Now he is all concerned about my weight, which I weighed the exact same as the 1st appointment. Another depressing appointment. He did put me on some pancreatic enzymes because I had pancreatitis when I got my gallbladder out 6 months prior to these symptoms starting. It feels like they may be working but not sure. Also they have no idea on why I got this.

 

So I decided to go to a chiropractor. My initial thought was to try accupuncture but my insurance doesn't cover this. So I went to appointment anyways and I feel almost 75% better. I still have my moments and have a lot of stomach pain and nausea. I have to take Tramadol for the pain and it takes care of it for the most part unless I am having a bad flare up. Those usually lasts weeks. But I feel like something has changed since going to this chiropractor. I am very limited on what I eat. Hardly ever eat out and when I do its really hard, lots of anxiety I may eat something wrong or whatever. I also have a 4 year old daughter so I have no time to be down. She just won't allow it. She has Chiari Malformation(rare brain disorder) so she needs me to be healthy and strong for her on the days she has headaches, neck pains, leg or foot pains. I am 5ft and weigh 94 lbs. So I am very underweight. But I still want there to be more research. I do take Domperidone and there needs to be more testing on that drug or it be available in the United States because it works for me. It defintely takes away my nausea. Please help us find a cure!!! There are so many people that suffer from stomach conditions and we all need help!!!

 

This is an image of Bre and Trish.

This is an image of Bre and Trish.


Leanne's Story of Hope

Leanne’s Story of Hope

Written By: Leanne

 

Hi Everyone, I was asked this past Sunday to write a short bio of myself, and to explain why I think it's important to fight gastroparesis.

 

I'm 42 years old and live in a small town called Tillsonburg in Ontario, Canada. I have a wonderful boyfriend, we've been together a for a couple of years, and we have two cats and a dog. I also have amazing parents who have advocated and fought for me every step of the way.

 

I've had GP for 30 years, but went undiagnosed for the first 20 years. I kind of consider myself a GP veteran with this many years under my belt, but in no way do I think that that makes me an expert. My GP symptoms began around the age of 12, after I incurred a a pretty bad back injury, spondylosis with severe degenerative disc disease and spondyloarthritis. My injury also went undiagnosed and worsened over time. While it's been speculated that this is the contributing factor to my GP, no one is sure. I also have severe IBS.

 

The first 20 years were tough. Doctors, meds, tests, and lost opportunities. I ended up having to drop out of University in my 3rd year due to GP, I had hoped to get my PhD. in psychology. I learned pretty quickly that life doesn't always turn out as one hopes. For the last ten of those 20 years it was "all in my head" according to the doctors, and I often found myself in that medical paradox, asking for help from the medical community that I was at the same time constantly fighting.

 

At this point, I had given up. I was horribly sick, I had lost over 100 pounds (my weight has always fluctuated, I've gained and lost over 100 pounds 5 times now, with smaller fluctuations in between). My doctor refused to give me another feeding tube, because my "issues were psychological" and not medical. To be completely honest, I thought I wanted to die. I'd had enough and I had come to the realization that no one was going to help me.

There I sat, looking out the window, at my lowest point, thinking about how absolutely horrible my life had turned out to be. Then, out of the corner of my eye, I spotted a hummingbird. I watched her going about her business, going from flower to flower, doing her thing. Suddenly, I noticed something. I WAS SMILING. Here I am, at the lowest of the low and something so inconsequential as a hummingbird was able to put a smile on my face. It had brought me a moment of joy, something I had not allowed myself to experience while I wallowed in my misery. I had gotten so caught up in my fight with GP that I had forgotten to allow wonder and beauty into my life. I suddenly realized that my spirit, while beaten up and bruised, was not broken. I was and am far tougher some shitty illness.

 

I pulled myself up, got myself together, and started to REALLY ADVOCATE for myself. I found a specialist on my own, went in with an agenda and plan of what I wanted and what I was willing and unwilling to do. To make a long story short, my advocating made all the difference, and I was finally diagnosed soon after.

 

Since my diagnoses, life has been better. It's still really rough at times, as everyone with GP knows. It's very easy to allow oneself to get completely caught in the medical misery of it all. The one thing I'd like you to take from my story is, to take a moment, a breath, if you will, and allow yourself to see the wonderment and joy life has to offer, no matter how fleeting that moment may be. Those little moments are the things that make the fight worthwhile.

 

You'll realize that you are tougher than you think, and you just may find yourself smiling.

Much love.

Leanne submitted this photo with her Story of Hope.

Leanne submitted this photo with her Story of Hope.

Daniel's Story of Hope

Daniel’s Story of Hope

Written By: Daniel

 

Last night was a good night. I felt well enough after work to clear the snow from our neighbor’s driveway as well as our own. It took a long time and was heavy, wet snow (got to love New England) but I didn’t even have my usual wiped out feeling after. My son watched me with the “tractor” (snow blower) out the window and I gave him snowballs to eat, his favorite. When I was done I came inside, wrestled with my son in the living room, ate dinner with the family and watched a movie with my wife before bed. Unfortunately because I was feeling so good and having fun, I made some bad food choices.

 

Today was not a good day for my Gastroparesis. I woke up in the middle of the night with the usual nausea and beyond full stomach. I woke up this morning and knew it would not be a good day. I was wiped out, my nausea was terrible and I just wanted to go back to bed. But I got ready and went to work. Things only got worse from there as my nausea increased. At one point this morning I did not think I could make it through a meeting for fear of vomiting. But I pressed on.

 

I kept telling myself to just make it a few more minutes, to just focus on a specific task, to just calm down and keep going a little more. It reminded me of when I used to run. When I would get so tired I would say to myself, “just make it to that next tree,” then, “just make it to that next pole.” It’s a constant struggle, almost like a game, albeit a terrible one!

 

My wife and son came to visit for a minute and that made me feel a little better, emotionally if not physically. I was discouraged for sure. A great night turned into a bad day and I am tired of that. But I also felt better by trying to remember to pray when I was discouraged so that my illness would not ruin my relationships or my testimony or my joy in life. It is so easy to be consumed with being sick or with discouragement. That is a daily and ever present struggle for those of us with a chronic illness. A good night can turn into a bad day tomorrow. For some of us, we know how a good hour can lead to 10 bad hours, we never know what to expect.

My encouragement is to keep going for just one more hour, just one more task. Use those you love for support and encouragement. Above all, continue to pray that you would not be consumed with your illness. Do not let it rob you of your joy and keep pressing on!

Jennifer's Story of Hope

Jennifer’s Story of Hope

Written By: jennifer

Hi my name is Jennifer I am 45 years old.  I have had stomach issues since my teenage years, starting out with what doctors said was Colitis.  I always had either diarrhea or constipation, and the doctors also thought I had IBS.  In 2008, the problems were just intensifying!  The doctors believed my Gallbladder was causing my issues so they removed it.  After the surgery, it just went downhill.  The Surgeon that removed my gallbladder knew there was something else going on and he was worried but said I had to go to a GI specialist. There was nothing more he could do for me. 

 

I found a GI specialist and when I walked into his office, he looked at all of my records and without doing any tests told me I had IBS.  He gave me Reglan and sent me home.  When I let him know it was getting worse and medication wasn’t working, he basically told me it was all in my head and nothing more could be done.  That was in 2009, so I was done with doctors.   I was beginning to believe it was in my head.  I went the next few years dealing with the flare-ups and the ups and downs, and it was hell! 

 

Then in 2011, I received the worst news that anyone could get.   I had a very rare cancer that only one in a million people get ( dermatofibrosarcoma protuberans).  The only way to treat this is with MOHs surgery.  They removed quite a big section out of my shoulder and were able to get clear margins.  I will be cancer free for two years in September of this year.  Yea!  Needless to say,  the healing was excruciating and my stomach issues were put on the back burner. 

 

In November of 2012, I had a flare up that would not go away and it also came with new symptoms (extremely nauseated, lost weight quickly, etc.).  I went to my family doctor who sent me for a EGD.  It came back normal but the doctor felt he needed to do one more test which was the Gastric emptying test. I thank God he ran that test because that's when I finally got diagnosed with GP (not a good thing but at least I knew it wasn't in my head, I was not CRAZY). 

 

I am a small person to begin with weighing at around 100 pounds and 5 foot tall.  At this point I was at 92 pounds.  After being diagnosed, I found a good GI doctor who put me on Reglan again.  Of course it didn’t work.  He told me there was nothing more he could do for me and recommended that I stick to a strict diet. 

 

At this point, I had been on just a liquid diet due to the pain and extreme nausea and I was getting weaker and weaker.  He told me that I was not a candidate for a feeding tube because I had not lost enough weight.  WOW!  I couldn’t believe that.

 

Within two weeks I was declining quickly, and becoming more and more malnourished.  I was very weak and I lost more weight until I was down to 87 pounds.  I called the doctor and that day.  He saw me and set me up with an appointment the following week for a feeding tube. 

 

The day I went in to get the feeding tube, it had been one week since I had seen the doctor. I found that I had lost more weight - four more pounds.  I have the feeding tube now and I know it will be very helpful.  It doesn't seem that way right now but I know it will. 

 

I have to fight to live. I mean I fought cancer and I beat it!  Now, I know that this disease will not go away as there is no cure but I’m a fighter!  I need to fight for the ones I love and I need to show this disease that it’s not going to take me down that easily!

 

Some days I break down and just sob, though. This illness has taken away so much from me in such a short amount of time.  But, it can't take my four wonderful daughters, my extended family, my grand kids, and my best friend of all my soul mate (my husband) away.  They are my life!   Bless their hearts!

 

This has taken such a toll on them watching me go through what we all go through with Gastroparesis. No matter how hard it gets, please know God is there with you and he will carry you when it gets too hard to walk.  Please know that there are wonderful support groups that will walk every step with you! All of us GPers are family! May God bless each and every one of you!

Shannon R.’s Story for Conflict Resolution

Shannon R.’s Story for Conflict Resolution

Written By: Shannon R.

 

I know many people have issues with others who may not understand Gastroparesis and they may act horribly towards you because your outward appearance seems fine.  Here’s my advice:

 

When you are angry with a person please try to find the solution to the problem, don't let it fester because when it does it turns into anger, and when we are angry it turns into depression. So in order to resolve our daily conflicts there are some very easy things that we can do to not carry it around with ourselves and make us sicker than what we already are.

 

There are some simple ways to rid us of it:

 

1 When we are in argument we must play the tape back and see the part that we played in this situation. We always have played a part not one of us is totally innocent.

 

2 When you see that you don't want to forgive that person we should pray for that person for 30 days and if that doesn't work we must pray for them even longer at times.

 

3. The third thing we can do is look for a good sized rock and carry it around with us to remind ourselves if this is a regret we would like to carry around with us for a long period of time or short period of time.

 

4 The next best thing that I really have a lot of respect for is that when we are ready to forgive that person is that we say: I forgive you, Thank You and I love you.

 

Number 4 will be the one that really catches a person off guard because they are not sure how to respond to it and the other party will feel pretty good about it and they might just forgive you for it.

McKenzie's Story of Hope

McKenzie R.’s Story of Hope

Written by: McKenzie R.

 

My baby sister has Gastroparesis. I have watched her battle this illness since the day after our homecoming dance, that was the last day a food substance stayed inside her body. Since then she has had surgery, tests, tubes, probes, and doctors coming and going. this has been hard, watching her in so much pain and watching how her clothes slowly swallow her up, but in all of this struggle she has grown and continues to grow into the most beautiful human being I know.

 

I'm crying, but seriously, she’s so much stronger than I will ever be and so beautiful. You know I used to think when I went in public and saw people calmly and normally conversing and acting with someone with a disability or sickness that it must be hard, but I was so, so wrong. I had an epiphany, while pushing Maddie around in her wheelchair and running through the grocery store with her making car noises and watching the colorful flaps on her very vibrant hats fly in the wind as we make a scene in the middle of the store.

 

It never occurred to me that people were staring at us, not because of our obnoxious behavior but because there was a tube coming out of her nose that was connected to a bag on her back. None of that mattered all I cared about was making noise and disruptions just to see that beautiful smile on her face that crinkled the tape by her nose, but now she holds her side when she’s in a fit of laughter because the tube has been moved and surgically implanted through her abdomen. She hasn't eaten since September and she’s so full with life and humor and it just goes to show the endurance and survival of the human being.

 

 I love you Madison!

Love,

Sis

Lora's Story of Hope

Lora H.’s Story of Hope

Written by: Lora H.

Thought I'd tell Jonny and my story. Hopefully it may help someone who is having difficulties in a relationship, marriage or whatever. I hope it’s helpful!

 

Everyone has one, and we usually look upon them with fond memories the entirety of our lives. I'm talking about a first love. Though the story books would have you believe that love ends in "happily ever after", most of us know that that is not always the case. I'd like to share a story of one such love; one that for 36 yrs I thought would end WITHOUT the happily ever after.

 

The year was 1976, the end of November to be exact. A very insecure young lady anxiously awaits the arrival of her stepmother, who will transport her and her younger brother to their first day of Sunday School in the small town where her father and stepmother live. The young lady knows NO ONE beyond family in this little town and being at that awkward age of 12 isn't confident that she'll be able to make friends in this new setting. Eventually, her step-mother arrives and the three of them head for the church. Upon arriving at the church, the step-mother insists on taking each of the children to their respective classrooms. They first deliver the brother to his classroom, before heading downstairs, where both the girl and step-mother's classrooms are located. Reaching the girl's class first, the girl makes one final attempt to convince the step-mother that she doesn't need to follow her into the class, a plea that fails.

 

Embarrassed beyond all reason, the young girl steps into the class. As the threesome was running late, the class has already started, thus when the girl first walks in, the entire class turns to see who the newcomer is. The young girl, wishing the floor would simply open up and swallow her looks at the floor as if expecting it to happen. The next thing she hears is a voice from the circle that is the class as "I suppose you have something for the offering, don't you?" The girls looks up, meeting the eyes of the most breathtaking young man she's ever seen. She stands transfixed for what seems like forever, before the step-mother pops her head in the door checking to be certain everything is as it should be and that the girl is in the right place.

 

Released from her stupor, the young girl, realizes that the teacher is indicating that she should have a seat next to him in the only open chair. Once the typical "round the group" self introductions, the class resumes. During the course of the class, the girl keeps feeling as if someone is watching her. Each time she summons the courage to look up, she seems to catch the breath taking you man quickly looking away. Finally, the class concludes, and as she walks out the door, the breath taking young man, walking directly behind her, asks if she'll be staying for church. Answering in the negative, she quickly escapes out the door to retrieve her younger brother. After collecting him from his class, they return to the downstairs classrooms to wait for the step-mother.

 

That afternoon, the girl is so distraught over the events of the morning, that she does something completely out of character, she offers to help the step-mother clean up after lunch. As the girl and the step-mom work together in the kitchen, the girl relates the events of the morning, hoping that the step-mother can give her advice about how to get a hold of her racing emotions. Before the step-mother can respond, the phone rings. The step-mother answers, speaks briefly with the caller, eventually saying, "Yes, she's here." This statement sends the girl into a tailspin, as she is the only other "she" in the house, and since she only spent 1 day a week with her father, she NEVER gave her friends his telephone number. The girl first thinks maybe something has happened to her mom, so when she sees the step-mother holding the phone out to her with a goofy grin on her face, the girl is very confused. Reluctantly, the girl takes the phone, hesitantly saying "hello". She instantly knows the voice on the other end; it belongs to the breath taking young man! Yes, as it turned out, his parents had gone to school with her parents, and it being a small town, it didn't take too much to look up her dad's number. Thus began an odyssey that has taken 36 yrs to fulfill.

 

Yes, folks, I was that insecure young girl, and the breath-taking young man, was my GP'er, Jonny! We "went together" for about 6 months that first time, but being in two different school districts, not having common friends and our tender ages (12 and 13) the inevitable happened and we eventually drifted apart. Over the intervening years we again dated on and off, eventually married others, dated again when we were both divorced the first time, again going our separate ways, each of us venturing into second marriages, doing our best to make those marriages work, but ultimately failing. During those last marriages, we'd lost track of each other, and hadn't had any contact with each other in over 15 yrs, when about 2 yrs ago, I dreamt of Jonny, so vividly that I couldn't shake the feeling that something was terribly, terribly wrong with him.

 

Despite having made multiple attempts over the years to find him via the internet with no luck, I again did a search for him on MySpace and Facebook, and again failed to find him. Several days later, when talking with a friend that I consider an "adopted" sister, I suddenly saw his name appear in the "people you might know" section. It never occurred to me that she had gone to the same school with him, that she would know him too! After much thought and consideration (and at least 5 re-writes) I sent him a PM - the last time we'd separated, the circumstances weren't the best, and I wasn't certain of my reception from him. For a week, I stressed, not knowing whether he'd respond and if he did, what his response would be.

 

Finally on day 8, I opened my FB to find a reply! Though surprised by my message, he was thrilled to have reconnected. It was then that I learned of his situation - diagnosed with GP, suffering from ITP after being treated for cancer, his 2nd marriage on the rocks, unable to work any longer due to the GP and ITP and seriously depressed. I too was in a marriage that had been dead for the past 5 years, had a herniated disk in my back, fibromyalgia, high cholesterol and a long term battle with bi-polar. Our only saving grace was that we both (Jonny and I) are Christians, and as such we were both committed to doing everything we could to make our marriages work. For 10 months, we corresponded via FB as strictly friends.

 

Last year his wife walked out, filed for divorce and left him homeless and devastated. I was still struggling with waiting for God's direction in regard to my failing marriage. My back had gotten to the point that surgery was necessary to try to relieve the pain. My then husband was NOT for my having surgery and did everything within his power to keep me from having it. When I did end up having it, he dropped me off at the hospital and aside from calling me incessantly, he NEVER stepped foot into the hospital. In fact the next day, as I was awaiting release, he called me 30 times in 2 hours, getting increasingly angry with me, because I hadn't been released yet!!! He even argued with my doctor over the phone over the fact that the doctor refused to allow me to ride for 3 hours in a car back to where we were staying at the time. He dropped me at my sister in laws house, telling me as he left "Don't be a pain in the ass!" When even my sister in law (his sister) was telling me that I should get the heck out, I knew I needed to do something.

 

I left 3 weeks later - as soon as I could safely travel. Jonny and I continued to correspond with one another, growing closer as we helped each other navigate the ups and downs of processing a divorce. Several months after my separation, I gathered the courage to tell Jonny how I'd always felt about him. I did this via an e-mail, and in my anxious state over his possible response, I COMPLETELY forgot the fact that I could access my e-mail on my phone! LOL! I was away from my computer for the greater part of that day and was going nuts wanting to know what, if any response there may be!! I FINALLY managed to get online again around 10 pm that night, and to my utter shock and happiness, I learned that he too had always had strong feelings for me, but had also thought he'd blown his shot with me!!! From there, things happened rather quickly. Jonny was becoming dangerously depressed because of all the factors of divorce, GP, not knowing what was going to happen, having no income, etc. So I finally convinced him to let me come out to him to help take care of him. I arrived here in mid July, thinking I was coming out for only a month or so. (He had surgery scheduled and that was the deciding factor for my coming as he'd need someone with him 24/7 for a week or so.) It didn't take us long to realize what GOD knew all along, that we were meant to be together!!!

 

We have some obstacles to get over first, but with God's help, we'll be married in the near future. Like I tell Jonny all the time, God knows what's best for all of us, but sometimes we're either to dumb, hard-headed, or just plain obvious to see HIS plan; that's why we go thru a lot of the turmoil that we experience in life. God is also in control of everything that happens to us, and while I can't say that I understand why He's chosen some of us to suffer the way those with GP do, I do know that there is a reason, and that HE is with each and every one of you as you live day to day!!

 

I tell you all of this to encourage each of you that reads this to keep on, keeping on! Despite all the years, all the heartaches, all the hurt that gaining and losing Jonny caused over this time, I ALWAYS held onto HOPE that one day...one day we'd get our chance to be together. While I wish we'd gotten smart sooner, I awake each day thankful that God has given me this time to be with and enjoy time with Jonny! We are that extremely rare, often never found, the "other half", WE ARE TRUE SOULMATES!