Do you have GP? Are you the caregiver of someone with GP? Do you know someone with GP? If so, would you please answer these 36 question so we can bring awareness to this debilitating disease and make a difference as we write the story of ‘Life With GP’.
Gastroparesis literally translate to “paralyzed stomach.” The Reader’s Digest version is if someone with Gastroparesis eats a meal, it will either take a long time to digest or it just sits in the stomach and will not digest. Because of this, the following symptoms usually occur:
upper abdominal pain
not feeling hungry
early appetite satisfactions
erratic blood glucose levels
Every person diagnosed with Gastroparesis has a different degree of severity and cause. Usually, damage to the Vagus Nerve or Diabetes are the major causes of this debilitating disease. Others have what is called Idiopathic Gastroparesis, which is an arising spontaneously or from an obscure or unknown cause. There is no found reason as to why the stomach stopped working in this case. Doctors can guess, but there is no way to test to confirm these theories, yet.
A doctor at the Cleveland Clinic has said that a third of patients diagnosed with Gastroparesis will get worse; a third of people will manage to plateau and live with it on a roller coaster throughout life; and a third of people will actually get better. There is no cure for this condition, just symptom management at this time.
There are not great odds, but with awareness and more research we hope and pray that one day someone will find a cure for this rare, invisible illness.
August is Gastroparesis(GP) Awareness Month. K3, along with Gastroparesis Patient Association for Cures and Treatments (G-PACT), are recruiting our friends, family members, and the rest of the world to take part in a new video awareness campaign. We are hoping many of you will get involved by creating your own brief clip for this effort.
We would love to see supporters of our GP community “Take a bite for GP!”
Is your condition so sever that you can’t eat even a bite? No problem, then just hold an empty spoon. It is our hope that this will have a greater impact on the people of the world.
You don’t like to be in videos? Hold a sign and take a picture! The idea is to get people to notice that GPers can’t eat with the ease that “normal” people can. Be creative, we know you can! The intention is to start spreading the word and creating these brief video clips and/or photos for release. We hope to have the campaign off and running during August, Gastroparesis Awareness Month. We want to see your photos and videos; so, once you have made your clips post it to at least one of our social media sites and tag them with #TakeABite4GP! Then we may pass some of them onto G-PACT.
Hope you will join us and spread awareness for GP!
I would like to preface this post by saying that we are not calling anyone out or mad/upset with anyone. However, I am posting this to bring awareness to INVISIBLE ILLNESSES, Disabilities, Diseases, Conditions, … and help to stop people from mocking and laughing at people for things beyond their control.
We are not ashamed to talk about our INVISIBLE ILLNESSES. If you are wondering What is Gastroparesis? then click here to read our first blog. If you have any questions or do not understand what is going on, then just ask and we will gladly answer you the very best that we can, but please do not assume anything.
True pain can only be experienced by the person that is hurting. To those who do not know the whole story or have felt the pain that we feel, please come walk in our shoes. Until you have watched someone you love struggle to make it through the day, then do not question whether or not it is real!! Until you know what is going on in another persons life, then keep your cruel comments and opinions to yourself. Until you can not do the “NORMAL” things, then do not take like for granted. It is a daily struggle being in pain or feeling sick on the inside while you look fine on the outside.
We are counting on you, our friends and family members, to help us get the word out about the INVISIBLE ILLNESSES that people face. I know that most, if not all, of you would be there for us when we need something, no matter what; but, for those that do not know about these INVISIBLE ILLNESSES please take a moment and look at our More News Page to learn about what Kirsten and those like her, with INVISIBLE ILLNESSES, face on a daily basis.
We are doing our best to bring awareness to these INVISIBLE ILLNESSES and educate everyone about them. Below you can find a list of INVISIBLE ILLNESSES and Rare Diseases.
Cancer Dandy-Walker Syndrome
Irritable Bowel Syndrome
Oppositional Defiant Disorder
Paget Disease Extramammary
Please comment about any INVISIBLE ILLNESSES that you may know about. The world needs to be made aware of the issues.
Disease Conditions, Information, Resources and Guides
When people get sick others typically seem to stay away wanting their friend to have time to themselves to rest, relax, and get well. You know you have done it, I have too. We check in on the sick occasionally, and get the report that the person is getting better. After a few reports of getting better we think that they a doing good and are back to normal.
We hear that they are sick again a little while later and check in on them and get the same report, time and time again. Then we wait to hear other updates in hopes of the person getting well; but, we stop hearing reports on them.
What happens next is that you start drifting apart and lose contact with one another. The visits, phone calls, drop ins all stop. We forget to check in on them. The whole time they are getting sicker and sicker. One day you hear from a mutual friend that your friend is really sick, but doesn’t show any symptoms of any known illness, and this mutual friend tells you that the diagnoses is a rare disease that they have never heard anything about.
Yes, this is a semi real situation. We all know the old adage about not taking today for granted because we are not assured of tomorrow. This is no more than with friends, old, new, distant, or what ever you consider your relationship. I just want to encourage you to keep in touch with your friends, you never know what may happen to members of your community – close-nit, estranged, or otherwise unknown.
Take a moment and think about your FRIENDS
Packing up the dreams God planted
In the fertile soil of you
Can’t believe the hopes He’s granted
Means a chapter in your life is through
But we’ll keep you close as always
It won’t even seem you’ve gone
‘Cause our hearts in big and small ways
Will keep the love that keeps us strong
Gas is the state of matter distinguished from the solid and liquid states by relatively low density and viscosity, relatively great expansion and contraction with changes in pressure and temperature, the ability to diffuse readily, and the spontaneous tendency to become distributed uniformly throughout any container.
And to that we all say, HUH?
Gas is what usually helps move an object or as the definition states, through any container (such as the intestine of a human body); but, in our case these objects aren’t moving at all.
Get in the Wayback machine and travel back 2008 with me. We were told that Kirsten had ‘delayed gastric emptying‘; however, that was not explain to us and it appeared to us that it was not a very big issue. The doctor acted like it was just an uncomfortable problem that would work its self out and she would be alright in the ‘long run’.
We have spent the better part of fve years battling an unknown issue. Now Kirsten is being seen by a team of doctors at the Cleveland Clinic in Cleveland, Ohio. She is under going a second evaluation for their Reconstruction/Transplant program. This time for a Isolated Small Bowel Transplant side of this process. We were in Cleveland a couple of weeks ago to begin this process and are in hopes that she will be moved from the eval list to the transplant list once she finishes seeing some of her doctors locally to finish the myriad of test that they need completed to proceed.
We are ready to move forward with this part of our life and we ask that you continue checking in on us through our Facebook page (K^3/K cubed) where you will find links to our other sites. Thanks again for everything y’all have done, are doing, and will do; this would not be possible without you.
We do and I am not talking about the kind in your car or in a grill. I am talking about the kind in your body, Gastrointestinal (GI) issues. When these things come into your like, your whole life changes. You have to think about what and how you do things, as well as, when and where you do them.
You want to know what am I talking about, then check to the last post entitled – What is Gastroparesis? . However, this post is about finding a ‘New Normal’. Normal does not exist any more. Each day is a trail as to what is going to be done. One day you may think you can run a race, but halfway through it you realize that you have taken on to much and have to get a DNF for the race. Then there are days that you just want to stay in bed and rest because either the pain is so bad you do not think you can do anything or you just want to be left alone because you do not want to see people in your condition.
People with these symptoms are thought to not have serious issues or illnesses. I am here to let you know this is not the case. My wife has been dealing with Gastroparesis (GP) for a few years now, and these are just a few things that we deal with on a daily basis. Her days are all she can make them, with the activity level changing by the minute.
If you know or hear of people in this type of a situation, please keep them not only in your daily prayers; but on your daily to do list. Just do me a favor and listen to the words of Michael W. Smith in his song Friends and remember to keep them close because, “(it) keeps them strong and a friend will not say never, because the welcome does not end.”
Please remember to keep a check on the sick and elderly on a regular basis, so that they know they are not forgotten and that they are love them.
I would like to take a moment to inform you all about an uncommon disease. My world has been turned upside down for a while now. I am not complaining in the least little bit; however, I do want to let everyone know what is happening. A little over a year ago I was diagnosed with Gastroparesis (GP).
You may ask, What is GP? GP, also known as delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. The GI tract is a series of hollow organs joined in a long, twisting tube that runs the entire length of the digestive system, from the mouth thru the butt hole. The movement of the muscles in the GI tract, along with the release of hormones and enzymes, allows for the digestion of food. GP can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether.
The later of these two options is where I now stand, as my tract is completely shut down and live off of a special nutritional formula – total parenteral nutrition (TPN) – that is taken in thru a Hickman Line, that is surgically place into my chest.
I hope this helps you understand a little better about what my world is like and can see a little into a day in my life. If you are interested in helping people with GI issues, then I would like to ask you to contact me. I am looking for people that are willing to help make a difference in this world. It is a long road back to a normal lifestyle for people that are affected by GI problems, but together we can make a difference.
Who would have ever thought you could transplant a digestive tract or even reconstruct it? We had no idea but we also had no idea that your digestive tract could be paralyzed either. Kirsten has just that, a paralyzed digestive tract, also known as Gastroparesis and/or DTP digestive tract paralysis. The medical research in our country is amazing and Kirsten being accepted into the intestinal transplant program proves this and will help pave the way for others who are also battling this debilitating disease. There are very few treatment options for Gastroparesis and one is a bypass, Kirsten has had that and another is a total gastrectomy and Kirsten has had that too. Unfortunately the lack of motility in the rest of her digestive tract just made things worse. This disease literally turns your life upside down. It affects other organs and just wears on those affected and their family and friends. Many in the medical field do not know much about Gastroparesis but we will continue to spread awareness no matter the outcome for Kirsten. Right now we know there is a glimmer of hope to get back to some normalcy and that is our main goal.