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Sunday, August 26, 2018

Stories of Hope From Gastroparesis Warriors

I know there is a lot of negativity involved when you have a chronic illness. It is hard to push negative thoughts out of your head when you cannot go out to eat with friends like you used to, you cannot go to see the latest movies, and you are basically stuck at home, sick all day. It requires a lot of energy from people who are suffering from Gastroparesis to even walk across the room, some days. In the process of coming to terms with an illness like this, Gastroparesis Warriors tend to lose friends, either because the friends do not believe them or because they are too sick to go and hang out, like I mentioned above. Gastroparesis is a very isolating illness, and it hurts us not to be able to do the stuff we once did.

I started having a monthly movie night at my house, scheduled on every second Saturday of the month, so my friends can come over and we can watch movies, play board or card games, and just hang out. It means a lot to me that my friends are willing to do that. I thought I would mention it in here in case someone would like to do something similar. I may not be able to go out all of the time, but it's nice to have people who care about you enough to come over and spend time with you. I wanted to turn the negative into a positive.

Source:Wisdom Quotes and Stories

I wanted to share some Stories of Hope for you, from other Gastroparesis Warriors, in case you are feeling down.

My friend Jen writes,

"I was a very healthy 38 year old woman when I got sick suddenly in March 2017. I fainted a few times and broke my nose badly and suffered a severe concussion. I had surgery a few weeks later to fix my nose and the following day felt even worse. It was as if over night I could not pass gas, could not have a bowel movement, could not eat solid food or drink anything except Coke. I thought it was related to my narcotic painkillers I was prescribed after surgery. However, it got worse over the next few days and being concerned that I had a ruptured appendix, I went to the ER. They did a CT scan and found a large ruptured ovarian cyst. They gave me more pain meds and sent me home. It didn't get better, only worse. Two weeks later, I went back to the ER suspecting a small bowel obstruction. My CT was negative and they referred me to a GI doctor. I ended up having a upper/lower endoscopy, abdominal ultrasounds and a HIDA scan. At this point, being an RN myself, I suspected I had gastroparesis. I pushed for a GES, which showed more than 80 percent of my 'meal' still in my stomach at 4 hours - severe GP.

At this point, I still couldn't eat food and could only drink Coke and sips of Ensure/Boost. I was getting IV fluids and IV zofran as an outpatient 3-5 times per week. In early June I got an implanted port and home health care, which helped a great deal. I was on 2L D5NS a day plus 8 mg IV zofran every 8 hours. In late July, I started Domperidone. After a couple of weeks, I found I could slowly eat a few "safe" foods and my oral intake improved.

By the end of October, I was off my IV fluids/meds and eating a little bit better. I managed to put weight back on after losing so much. I had been off work as a labor and delivery nurse on disability since March and in late December went back on a very part time basis, slowly increasing my hours over the following few months.

It is now June 2018 and I am doing well, all things considered. I can eat a small amount of my 'safe' foods and the only liquid I can drink remains Coke (even water makes me vomit). I am at a healthy weight for me finally. I am off the domperidone and only access my port once a month to flush it with heparin (off all IV fluids/meds). I am hoping to get my port out later this summer if I continue to do well. I receive vitamin B-12 injections every six weeks and take prescription vitamin D supplements as nutritionally I'm still recovering from severe malnutrition. I still battle some pretty severe fatigue and ended up having to reduce my hours at work from full time to part time to accommodate my lower energy levels.

I am so thankful that I (narrowly) avoided a g-/j- tube and have managed to improve over the last year on my own. My GP was considered idiopathic, meaning they don't know how or why I developed it. They suspect it was either due to damage to the vagus nerve in my repeated fainting episodes or that it was viral in natural. Given that it's improved, I'm leaning toward viral, but we won't ever know for sure.

I received SO much amazing support in the Facebook groups I belong to over the last year and while I haven't been posting in them much lately, I think about all of those people very often. I want others to read my story and have some hope. I know when I was really sick, I had very little hope and it was stories like this that made me think some sort of recovery might be possible for me. I continue to watch many of my friends struggle with GP and my heart goes out to them."

She also included her before picture:

Here is Jen's after picture:

I want to thank her for being brave enough to share her story of hope.

The stories below were sent to me a while ago to include on my website, but I wanted to put them in my blog too because these people deserve to be heard. Plus, you never know, you might relate to some of these stories or they may help you.

The first story is about my friend Kerri, whom I lost this year. It hurts me to talk about but I wanted to put it in my category of "Stories of Hope" because I think she would have wanted that. She would want people to take a positive message from her story and to keep fighting. I believe she would want her story shared so that the same thing does not happen to someone else. Therefore, I present to you, Kerri's story.

Taken from GP STORIES.

Here is Kerri's story:

"My good friend Kerri passed away day before yesterday (in March). 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:

'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 (seeing dog) 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 (diagnosed) with conditions that explained symptoms and complications she'd experienced for MANY years and started treatment (it takes way too long to receive correct diagnosis). Now we will never know how much function she could have gained back. Especially, the 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 doctors to refuse care (for fear of litigation and punishment from the government. Today in medicine it's safer for doctors to walk away from complex patients rather than open themselves up to the risk, something I've experienced myself as well). We need to incentivize 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 and 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, and many friends.'"

Kerri in the hospital via Facebook.

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 acupuncture 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 definitely 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!"

Brie and Trish.

Here is 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 misdiagnosed 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 misdiagnosed 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."

This is a picture of Leanne.

This is 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!"

Source: Above, In image

Here is 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!"

Source: Google Images

This is Shannon's Story of Hope 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."


This is Charline's Story of Hope
Written By: Charline

"Three years ago my daughter, 13 at the time, had just entered junior high. She started having terrible stomach pains. I thought it was anxiety or something was going on in school. It was neither. Her GP even thought she was exaggerating. Then the time came when I became fully vested in finding out what was wrong.

My heart hurt for her.

She was missing school and dance which she loved. Her friends didn't believe her. So after a year of research, many doctors appts, testing and changing her diet a few times we finally found out that she had Gastroparesis.

Knowing made it so much easier to deal with. FINALLY!

The specialist put her on all of this medication that I wasn't overly thrilled about. The GI Doctor also had her go to a counselor to help her deal with this. That was a brilliant move on the doctor's part.

My daughter not only figured out how to deal with this medically but also mentally. She ended up getting off most of the medicines and is now on Pro bio tics-Ginger root-and enzymes with every meal. She started putting weight on and gained her confidence back.

This will be something that she will have to deal with for possibly the rest of her life, but once you find out what works for you then stick with it. Only keep good positive people around you. Your stress level will play a major role. Stay strong and positive. I am happy to say she is doing well and I am sure you will find you path. It may take a while, but never give up. You are so worth it!"


If you have any Stories of Hope that you would like to share to be added to this article, please email me at: emilysstomach[at]

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