Gastroparesis Medical Studies Update; Join and/or Keep Up With Clinical Trials

Source: Unknown

Source: Unknown

Source: On The Image but one of my favorites on how to explain Gastroparesis.









Clinical Trials - We Need Better Treatments

I apologize for taking so long to write an article. I, myself, have had a rough year like everyone else seemed to in the GP Community. I lost A LOT of friends last year in my support groups, people I started support groups with, and people I talked to regularly. I logged into Facebook this morning to check on my groups, as I've been sick with pneumonia on top of Gastroparesis for the past week and a half (before that, my husband and I were passing a respiratory virus back and forth) and found another one of my friends had died. She was someone I've known since I first started advocating for Gastroparesis. She was apart of the handful of women who helped start Gastroparesis support groups and build up the Gastroparesis Community. I wanted to dedicated this article to her, and the other friends I've lost. Last year, we lost 48 people. This year, so far, I think the total is four or five people. It's heartbreaking. We need better treatments. Having invasive "treatments" like feeding tubes, which can cause infections and worse, and then on the other end of the spectrum, medicine like Reglan, which can lead to irreversible, neurological disorders. We need medication to help our stomachs, to keep them from cramping so badly, to help them contract.

We need SOME kind of help. I'm so upset at watching my friends suffer and die. I get scared every time I throw up, wondering if it's going to be the last time - if this is the time I'm going to rupture my esophagus and die. I get panic attacks logging on to Facebook, scared I might read another one of my friends has passed away, which always upsets me right away, not only because they passed, but I feel like when I take breaks from Facebook, that I'm letting them down for not being online. I feel like I didn't get to say what I wanted to say to them before they passed. Most of that is on me. I've been not terrified to log into Facebook, but just



If you are interested in joining a clinical trial for Gastroparesis, The National Institute of Diabetes, Digestive, and Kidney Diseases are having people sign up for one now: https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis/clinical-trials


Centerwatch has a long list of clinical trials that need volunteers as well: https://www.centerwatch.com/clinical-trials/listings/condition/72/gastroparesis/


ClinicalTrials.gov has a current trial happening as we speak: https://clinicaltrials.gov/ct2/show/NCT03500354

The Trial Says,

"Brief Summary:

Gastroparesis is a chronic, morbid and costly neuromuscular disorder of the stomach characterized by delayed gastric emptying in the absence of gross structural abnormalities. The periprandial symptoms associated with this disease can preclude adequate oral intake and often lead to weight loss and nutritional deficiencies 1. These manifestations are largely due to impaired gastric accommodation of meals and delayed transfer of food boluses from the stomach into the duodenum2. Consequently, the investigators hypothesize that dietary supplementation with a low volume, hypercaloric nutritional drink can help prevent malnutrition, decrease symptom burden and improve health-related quality of life in this population. Due to the paucity of such a supplement, the investigators developed a novel nutritional drink designed to maximize tolerability in patients with gastroparesis . This nutritional drink was tested on healthy volunteers (phase I) and passed the palatability test. The investigators now aim to test the tolerability of this drink on gastroparesis patients.

Condition or disease Intervention/treatment Phase
Gastroparesis Dietary Supplement: Nutrient drink Not Applicable

Detailed Description:

Primary objective:

To evaluate the safety and tolerability of the nutritional drink in gastroparesis patients.

Secondary objective:

To evaluate the efficacy of the nutritional drink in gastroparesis patients.

Study Procedures This study will be a pilot, open-label, trial in gastroparesis patients. A total of 20 patients will be recruited from the gastroenterology gastroparesis clinic. If the volunteer meets eligibility criteria, a co-investigator will contact the patient to schedule a study visit with a nutritionist and obtain a written consent. The contact and screening information of patients that are successfully recruited will be documented, placed in the participant's study folder and stored in a locked cabinet in the research unit. Any information documented during the screening process for patients who do not meet basic eligibility criteria or do not wish to participate will be immediately destroyed.

Patients will be given enough supply of the nutrition drink for (4 weeks) and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled on day 2, day 7 and at the end of the study to make sure patients are tolerating the drink. Participants will be allowed to consume water and food as desired during the study period but will need to maintain an accurate food diary for at least one week prior to enrollment and during the study (at 2 weeks and at 4 weeks) along with weight measurements at baseline, 2 weeks, 4 weeks and 6 weeks. The participants will be asked to complete a palatability questionnaire. They will also complete the Gastroparesis Cardinal Symptom Index (GCSI) daily diary and the PROMISE scale prior to enrollment as a baseline for their symptoms and again at 2 weeks, 4 weeks (end of the study) and 6 weeks. Changes in these scales from baseline will determine the efficacy and possibly side effects of the nutritional drink.

Study duration and number of study visits required of research participants:

4 weeks, initial study visit with a nutritionist for screening and consenting followed by 3 follow-up phone calls on day 2, day 7 and at 4 weeks (the end of the study) and a final study visit at 6 weeks (2 weeks after finishing the study)


Study Type : Interventional (Clinical Trial)
Estimated Enrollment : 20 participants
Intervention Model: Single Group Assignment
Intervention Model Description: Pilot feasibility open-label study
Masking: None (Open Label)
Primary Purpose: Treatment
Official Title: Nutritional Drink in Gastroparesis
Estimated Study Start Date : February 1, 2019
Estimated Primary Completion Date : May 2019
Estimated Study Completion Date : August 2019




Primary Outcome Measures:

Tolerability will be measured by the Palatability Questionnaire at 2 days [ Time Frame: 2 days post-intervention ]

Patients will be given enough supply of the nutrition drink for 4 weeks and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled on day 2 of the study to make sure patients are tolerating the drink.

Tolerability will be measured by the Palatability Questionnaire which rates six items on a scale of 1 to 5 (1= strongly disagree and 5= strongly agree. The six items are:
The formula/supplement tasted very good.
The formula/supplement tasted very bad.
I had no problems drinking the supplement.
Drinking the supplement made me feel ill.
I could drink more of this supplement anytime
I would never drink more of this supplement again

Tolerability will be measured by the Palatability Questionnaire at 7 days [ Time Frame: 7 days post-intervention ]

Patients will be given enough supply of the nutrition drink for 4 weeks and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled on day 7 of the study to make sure patients are tolerating the drink.

Tolerability will be measured by the Palatability Questionnaire which rates six items on a scale of 1 to 5 (1= strongly disagree and 5= strongly agree. The six items are:
The formula/supplement tasted very good.
The formula/supplement tasted very bad.
I had no problems drinking the supplement.
Drinking the supplement made me feel ill.
I could drink more of this supplement anytime
I would never drink more of this supplement again

Tolerability will be measured by the Palatability Questionnaire at 4 weeks [ Time Frame: 4 weeks post-intervention ]

Patients will be given enough supply of the nutrition drink for 4 weeks and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled at 4 weeks to make sure patients are tolerating the drink.

Tolerability will be measured by the Palatability Questionnaire which rates six items on a scale of 1 to 5 (1= strongly disagree and 5= strongly agree. The six items are:
The formula/supplement tasted very good.
The formula/supplement tasted very bad.
I had no problems drinking the supplement.
Drinking the supplement made me feel ill.
I could drink more of this supplement anytime
I would never drink more of this supplement again

Safety will be measured by the NIH PROMISE scale at baseline [ Time Frame: Baseline ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

Safety will be measured by the NIH PROMISE scale at 2 weeks [ Time Frame: 2 weeks post-intervention ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

Safety will be measured by the NIH PROMISE scale at 4 weeks [ Time Frame: 4 weeks post-intervention ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

Safety will be measured by the NIH PROMISE scale at 6 weeks [ Time Frame: 6 weeks post-intervention ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

How Gastroparesis Acts in The Body. Source:https://www.pinterest.com/pin/278026976974184742/?lp=true









Secondary Outcome Measures:

Improvement in gastroparesis symptoms [ Time Frame: Baseline, 2, 4 and 6 weeks ]
Change in weight compared to baseline

Improvement in gastroparesis symptoms [ Time Frame: Baseline, 2, 4 and 6 weeks ]

Changes in the Gastroparesis Cardinal Symptom Index (GCSI) daily diary as compared to baseline. This is a six point severity scale (0-5 with 0= none and 5 = very severe) that rates the following symptoms
Nausea
Early satiety
Postprandial fullness
Bloating
Upper abdominal pain
Retching
Vomiting
Stomach fullness
Loss of appetite
Stomach or belly visibly large



Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

Ages Eligible for Study: 16 Years and older (Child, Adult, Older Adult)
Sexes Eligible for Study: All
Gender Based Eligibility: Yes
Gender Eligibility Description: Female or male
Accepts Healthy Volunteers: No
Criteria

Inclusion Criteria:

Patients with gastroparesis confirmed with symptoms and a gastric emptying study.
Inability to maintain adequate caloric intake by standard dietary measures for gastroparesis due to gastrointestinal symptoms

Exclusion Criteria:

Recent diagnosis of disorder other than gastroparesis that could affect food intake
Oropharyngeal dysphagia or other condition with risk for aspiration from oral ingestion.
Allergic reactions to any of the ingredients of the nutritional drink
Current pregnancy. Pregnancy status will be determined by questioning the potential subject.
Patient with gastrostomy/jejunostomy tube feeds or on total parenteral nutrition
Currently taking any anti-coagulant


Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03500354

Contacts

Contact: Pankaj J Pasricha, MD 4105027173 ppasric1@jhmi.edu
Contact: Carmen Roberts 4105027173 ccroberts@jhmi.edu

Locations

United States, Maryland
Johns Hopkins University Active, not recruiting
Baltimore, Maryland, United States, 21287
Sponsors and Collaborators
Johns Hopkins University
Investigators

Principal Investigator: Pankaj J Pasricha, MD Johns Hopkins University
More Information
Go to


Responsible Party: Johns Hopkins University
ClinicalTrials.gov Identifier: NCT03500354 History of Changes
Other Study ID Numbers: IRB00157677
First Posted: April 17, 2018 Key Record Dates
Last Update Posted: December 19, 2018
Last Verified: December 2018
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No


Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No

Keywords provided by Johns Hopkins University:

malnutrition


Additional relevant MeSH terms:

Gastroparesis
Stomach Diseases
Gastrointestinal Diseases
Digestive System Diseases
Paralysis
Neurologic Manifestations
Signs and Symptoms"

Source:https://preferredresearchpartners.com/gastroparesis-infographic/

What the Gastroparesis Groups Are Fighting For

I wanted to write this article to show the fallen Gastroparesis Warriors that we have lost, to not only honor them, but to bring awareness to gastroparesis, and also to remember what we as gastroparesis sufferers are fighting for. We need people to listen to us that we're sick, that we have gastroparesis, and that we don't have enough awareness, research, to even get a cure. I feel like we're screaming but no one is listening. WE NEED YOUR HELP!

If you are a group owner and/or an administrator of a gastroparesis group, please join Gastroparesis Alliance: https://www.facebook.com/groups/gpalliance/ so that we can talk about how to unite and have our voices heard. We should be working together, not against each other. Most gastroparesis (GP) groups have the same goals and I'd love to have discussions with you on how to proceed on working together towards our common goal. We can talk about running awareness events together, or even bringing our group members together to talk and meet each other. We need to remember that people can be a part of a group and also join another group. It doesn't mean that the group they are in is any lesser of a group, it just means that there are more people who may be qualified to answer questions that you or I cannot. We should work together to help people in the gastroparesis community as well as spreading awareness so that we can inspire research and eventually a cure.

Every gastroparesis group is important and I want to take the time to thank people for making groups that others can join to find answers, be able to vent, and to be validated. Some people do not get that validation from their family, friends, or even their doctors. When I was first diagnosed, my family and friends thought it was all in my head. I cannot tell you how many friends I lost because of my illness. Chronic illnesses like gastroparesis are very isolating and these groups that we have started are many people's only outlet about their illness. So, to all of the group owners and administrators, thank you for doing what you do daily. It's a very thankless job and a very demanding one. However, you ARE doing something important and you may not realize how many lives you touch on a daily basis. The running of groups themselves are very demanding, but thank you for being selfless enough to start one and to help people. People are thankful, even though they might not be able to express it, but I think it is an amazing feat considering all of us are sick ourselves. So, on behalf of myself and my family, I want to thank each and every one of you who do this and encourage you to keep doing it. You never know how much you might help someone, or even stay them from suicide. Each group is important and I believe that is why we should work together.

We really get so upset...there are no words, when we log into to our GP Community and realize that some of our members died overnight. It makes it hard to log in ... I'm honestly scared to get on the computer and log into Facebook, terrified of finding another green candle (a green candle, for those of you who may not know, signifies that someone in the gastroparesis community has passed away. It's our way of showing respect). We really need to make our voices heard. If we are going to get anywhere with awareness for gastroparesis, we need to team up as groups and work together. According to Aesop's fable, which has a wonderful moral to share about this very same subject, which can be found at:(http://fablesofaesop.com/the-father-his-sons-and-the-bundle-of-sticks.html,

"A certain Father had a family of Sons, who were forever quarreling among themselves. No words he could say did the least good, so he cast about in his mind for some very striking example that should make them see that discord would lead them to misfortune.

One day when the quarreling had been much more violent than usual and each of the Sons was moping in a surly manner, he asked one of them to bring him a bundle of sticks. Then handing the bundle to each of his Sons in turn he told them to try to break it. But although each one tried his best, none was able to do so.

The Father then untied the bundle and gave the sticks to his Sons to break one by one. This they did very easily.

'My Sons,' said the Father, 'do you not see how certain it is that if you agree with each other and help each other, it will be impossible for your enemies to injure you? But if you are divided among yourselves, you will be no stronger than a single stick in that bundle.'

Moral

In unity is strength."

For those of you who are suffering from grief because you've lost someone who meant a lot to you, I have an article for you to read that may make you feel a bit better: http://www.emilysstomach.com/2016/04/losing-loved-one-to-chronic-illness.html.

I hope that you'll join this important cause. I really need you, the gastroparesis community really needs you. The more voices we have, maybe someone will listen and help us. No one should starve to death.

Losing A Loved One To a Chronic Illness and Handling Grief

We have all been there. We see a post or get a call, and the floor drops out from under us. We don't know what to do or what to say because we have just been told that one of our loved ones has passed away, without rhyme or reason, due to complications from a chronic illness. How do you handle that? It seems like it goes beyond the regular grieving process because you watched this person suffer and wrestle with a chronic illness for a long time before they passed. You get angry because people make off hand comments that they knew this person was going to die because they were so ill, yet the last time you talked to your loved one, they were fine. So, how do you deal with the news, knowing that you will never get to have another conversation? Knowing what you do about their illness?

With Gastroparesis, it can be a lot more sneaky. I mean, most people seem fine on the outside but are suffering immensely behind the scenes. If you want to know more about how people with Gastroparesis live and what they suffer from, I have great resources in my blog. But this article, this is to honor those fallen GP Warriors, those who have given their lives to fight for a cure for Gastroparesis. We will never forget them and we will keep them alive in our hearts and our memories, and keep them alive in our fight. So, again, how do you deal with the loss? Based on my personal experiences, I'm going to share some things that really help me when I lose a loved one, especially really good friends, to an invisible illness.

I have another article with the stages of grief in it, entitled, "The Grieving Process for a Chronic Illness, and How to Overcome It" that you can find by clicking here: http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html. This will tell you about the stages of grief. I recommend reading it so that you can prepare yourself and to know how grief effects people.

The only logical answer I can give you is that there is no way to get over a loss. You can move past it, but you never truly get over losing a loved one, especially to a chronic illness.

Lean on support groups, with other people who have gone what you are going through, to help you through this difficult time. I recommend that highly, because people are social animals, and it helps to have empathy and people on your side with what you're going through. I started a Facebook Group, Grief Group for GPers, for those who have lost loved ones to Gastroparesis and who want to talk about it. We ask that everything posted in the group, stays in the group, due to family privacy matters. We also have an album of loved ones who have passed that we keep updated, so that we never forget why we are fighting and who we are fighting for, when we fight for things like awareness, research, and a cure for Gastroparesis. The group can be found here: http://www.facebook.com/groups/gpgriefgroup/.

Joining a support group can definitely help, but I also recommend writing. Writing helps me a lot. When I'm able to get out all of my feelings onto a laptop or a piece of paper, I feel purged and a lot better. You can tear up the paper afterwards or delete a word document, if you don't want anyone else to stumble across it but it helps to get your feelings out. I write this blog to help me deal with even having an invisible illness and most days, it helps me keep my sanity. You don't have to start a blog, but keeping a notebook will help. Like I said, you don't have to keep your feelings once you've written them down. You can throw them away, tear them up, do whatever you like to the page(s) that you write. I like to keep mine to reflect back on how I was feeling and how far I've come since that point. I have a journal that I write in and carry around with me, in addition to this blog.

Lean on your friends. I know this seems like a no-brainer, but your friends are there to support you and help you. Invite them over to your house (I don't know about you, but it's hard for me to go out since I suffer from nausea and vomiting a lot due to GP, gastroparesis, but everyone's GP is different) and put on a movie that you all love, play a game, board or video, and talk. It helps having a distraction and your friends will be there for you. You can tell them about your loved one, relive memories, and honor them in your own way. It helps, at times like these, to have friends you can depend on to make you feel better and the interaction will really help, especially if you've been keeping yourself in isolation.

And the last thing that I would recommend, especially if you can't go to the funeral, is to have your own ceremony. I know this sounds weird, but hear me out. You can do something simple and personal, between you and the loved one you lost. I take flowers, they can be hand picked or bought at a store, and I sit in the backyard. I place them at the edge of the yard, and I talk to my loved one that I've lost. I tell them how I feel, and you can do this in your head if you want to, especially if there are people outside. The important thing is to let out any pent up tears and feelings. Talk to the person you lost like they were there with you, next to you. Lay down the flowers and have your own moment. You don't need a funeral to let them know how you feel. I know I have a hard time going places because I vomit quite a lot, and I am always nauseated. Being in a car exacerbates that feeling, because I get motion sick, so I have my own ceremony, in my backyard. I know this sounds odd, but it really helps me. It helps me say goodbye and saying goodbye, in your own way, is very important. It's important that you let go. You can do whatever makes you feel comfortable, this is just my own little ritual I want to share with you to give you an idea of the things you can do. This is just very personal for me, and this is something I've never told anyone. A good friend of mine, whom I lost, once told me that she didn't want to die because of the suffering she would cause to the people left behind. I still think about that and she's been gone for twenty years.

We have lost five people so far, just this month, from complications due to Gastroparesis. It breaks my heart and saddens me...but it also gives me purpose. I want to continue fighting for those people whom we've lost, and I want to do it to keep them alive. One day, we will find a cure. But, for right now, I have high hopes for more awareness and research. I actually met a lady at the dentist who knew all about Gastroparesis, and I didn't have to explain it to her. She had read about it somewhere. It's going to happen. It may be slow, but awareness is taking shape, and hopefully, research and a cure aren't far behind it.

May our loved ones walk among the stars and be proud of us for carrying on and fighting for Gastroparesis.

My friend shared this article with me and I wanted to post it here, because it is amazing and I think it would help with the grief.

According to Funnyshare.com (http://beautythings.info/2017/09/24/when-asked-for-advice-on-how-to-deal-with-grief-this-old-man-gave-the-most-incredible-reply/),

"When Asked for Advice on How to Deal with Grief, This Old Man Gave the Most Incredible Reply.

Someone on reddit wrote the following heartfelt plea online:

'My friend just died. I don’t know what to do.'

Many people responded with words of encouragement, but one response in particular, by an older gentlemen, really stood out from the rest…

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to 'not matter.' I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love.

So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out.

But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks."

I do not have the source for this, but it does help me in times of grief:

Image Source: taken from Imgur

According to www.Churchill.com,

"Introduction - As much as we don’t like to think about it, death is a part of life. While it’s not a nice thought, there’s nothing we can do to stop those we love from passing away when the time comes. It’s understandable to feel sad and even helpless when this happens, but the pain will become easier to cope with over time.

Common feelings after a death

People go through various stages of grief when they’re coming to terms with a death. These five stages have been studied for years:

1. Denial. By denying the death has happened, it prevents the person from being overwhelmed by grief. It’s normal to feel numb, wondering how life can go on. It can be hard to accept what’s happened.

1. Anger. Being easily irritated is a normal response to the loss of someone close to you. You might feel like snapping at people, even if it’s unlike you.

1. Bargaining. While we feel helpless, it’s natural for thoughts to turn to what could’ve been done differently. For example, being nicer to the person or getting medical help earlier.

1. Depression. When our thoughts return to the present, it often leads to another level of sadness. At this point, it’s normal for a person to struggle most with the loss.

1. Acceptance. You’re not okay with what’s happened, but you’ve reached a point where you can get on with your life without it having too much of an impact day-to-day.

Understanding the common stages of grief can help a person be better prepared, but everyone grieves differently. There’s no right or wrong amount of time to be upset about losing someone, so let things progress naturally.

The biological process of grief 

Your body responds when you’re grieving. Once grief has triggered a response, you’re likely to experience a number of side effects, including:

• Boosted adrenaline. Our brain triggers the fight or flight response, leading to a faster heartbeat and additional release of adrenaline. You might feel on high alert.

• Exhaustion. Often caused by a lack of sleep, grief can lead to insomnia and depression – leaving you drained of energy and motivation.

• Digestion problems. Issues with your digestion can be common when experiencing sadness.

If you lose someone close to you, be prepared for short-term changes to your health. It’s normal to feel the effects on your body. Staying active and eating well can help.

Daily life when you’re grieving 

How to maintain your regular lifestyle
The impact a death will have on your life is significant. But there are ways to cope with a loss, including:

• Create a routine. Having a routine in place can help keep you balanced. A structure will give you a solid foundation to rebuild from, at a time when you’re struggling to find your feet.

• Talk to loved ones. Open up to the people closest to you. You’ll be sharing a lot of the same feelings and talking about them is an important part of grieving.

• Encourage yourself to participate. It’s natural to withdraw from life when you’re under stress. If you find yourself feeling this way, take small steps to do the things that usually make you happy.

Helping children cope with a death 

The loss of a loved one can be especially hard on children, because it’s probably the first time they’ve experienced these feelings. You’ll play a large part in helping them deal with their grief.

• Use clear and honest words. Be as clear as possible when speaking to a child. They’re probably struggling to understand what’s happening, so being open will help them process what’s going on.

• Listen to their concerns and questions. Make sure you answer any questions they have, and let the child know it’s perfectly normal to feel the way they do.

• Explain funerals. There’s a good chance a child won’t know what a funeral is. If you want them to go, give them a description of why it happens, and what to expect on the day.

• Help them remember the person. Talking about memories of a lost loved one can be helpful to children. This positive energy is therapeutic and may help them battle through the worst of what they’re experiencing.

• Do things to keep their minds active. Keep a child happy and distracted with activities such as family days out. Sitting inside for too long won’t help anyone.

Helping adults around you to grieve 

It’s not only children who grieve. You might want to help a partner, friend or family member who’s experiencing this kind of pain. Some of the best methods include:

• Listening to them. Don’t presume the grieving person would want to be treated the same way you would. Just having someone to listen to them can help. You don’t always have to give advice or have a solution.

• Talk about the person who’s passed. Sometimes people feel as though mentioning the deceased will be upsetting. But somebody who’s grieving might want to talk about their loved one, so give them time to bring it up.

• Reaching out. Don’t wait for someone to ask you for help. While you don’t want to be pushy, it’s nice to make sure a person knows you’re there if needed.

• Point them towards professional help. If they’re struggling to come to terms with their loss, you can suggest they seek professional help.

Getting help with grief 

Finding the support and care you need at this distressing time can make a huge difference. 

Getting emotional support from those around you 

During difficult times, we rely on those closest to us for support. But we’ve got to want their help, so bear in mind these points:

• Share your issues. Make sure people around you know if you’re struggling. There’s a better chance they’ll be able to help if they know what’s up.

• Say yes to help. If someone reaches out to offer you advice, be open to their support. A heart-to-heart can make a difference. It’s worth getting a range of support too, from friends and professionals.

It can be uncomfortable to open up about your issues, but it’s important to separate yourself from those doubts to get the help you need.

Taking steps to help with your own emotional health 

Looking after your emotional health and well-being is always important, especially when you’re suffering a loss.

• Stay physically active. Exercising has been shown to have a positive impact on not only your body, but also your mind. Depression and anxiety can improve when you’re active.

• Take up a hobby. Take your mind off what’s troubling you by enjoying a hobby of your choice. It’s important to do things you enjoy, and not feel guilty about having a good time.

• Get enough sleep. A lack of sleep can make things worse. Try to start relaxing before it’s time to go to bed

Support lines and communities 

If you find yourself struggling, and feel like you can’t turn to anyone, there are support helplines to guide you. 

You’ll be speaking to trained professionals, with experience of helping people who are grieving. Just some of the incredible services available include:

• SupportLine. Provides phone counselling to help people with a wide variety of problems, including bereavement.

• Bereavement Trust. Focused around helping those who are experiencing grief. A team of volunteers work round the clock to make sure people can get the help and support they need.

• NHS. If you’re ever feeling dangerously low, the NHS offers a suicide hotline. Always get the support you need.

Whether it’s from your friends, family or these dedicated services, there’s always support available to you after a death. Try not to isolate yourself – instead, reach out and get help. 

If you feel like you want to talk to people who are in a similar situation to you, support groups can be a great help too. Having someone to chat to, who can relate to your situation, is incredibly useful. 

Useful links
https://www.cruse.org.uk/children/how-to-helphttps://www.helpguide.org/articles/grief/coping-with-grief-and-loss.htmhttps://www.mariecurie.org.uk/help/support/bereaved-family-friendshttps://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/http://www.parentcompanion.org/article/understanding-the-stages-of-grief"

A friend sent me some websites that might help you in your grief and how to handle it with children, and the estate of a loved one:

http://www.lclark.edu/live/files/5969-grief-at-worka-guide-for-employees-and-managers

https://www.petcoach.co/article/grief-the-loss-of-a-pet/

http://www.drugrehab.org/coping-stigma-grieving-overdose-death/

https://www.vitas.com/resources/grief-and-bereavement/helping-grieving-children

https://www.cancer.org/treatment/end-of-life-care/grief-and-loss/depression-and-complicated-grief.html

https://www.neptunesociety.com/resources/preparing-for-the-death-of-a-terminally-ill-loved-one

https://www.homeadvisor.com/r/create-peaceful-at-home-hospice/

https://privatebank.wf.com/conversations/article/settling_a_family_estate

https://www.nytimes.com/2012/09/20/garden/letting-children-share-in-grief.html

https://www.parents.com/toddlers-preschoolers/development/social/talking-to-kids-about-death/

https://www.redfin.com/blog/how-to-be-estate-executor

18 Year Dies from Gastroparesis Complications

This is why I started this blog. I wanted to share awareness with you all. I have the same disease this girl did. Please read the article. There are several points I want to convey to help you understand what I go through on a daily basis.


We need more awareness. No one should die because of this disease. My heart aches for her family and friends but I'll keep fighting for her and my other GP members. This just motivates me to do more and keep fighting. I know that I've been feeling discouraged lately, but this was the kick in the pants I needed to snap out of it.

Pay attention to the bold texts. That's similar to my story.

SPANISH FORK — A Utah woman who recently died from Gastroparesis is raising national awareness about the disease and inspiring people across the country. Haley Stonehocker of Mapleton died in her sleep on Thursday night. Her family and friends say she was the first one to help comfort anyone in need and she left this world wanting to help educate more people about her illness.

With a green ribbon on their chests, members of the G-Pact online community (Gastroparesis Patient Association for Cures and Treatments) gathered at Haley Stonehocker's funeral - standing together to honor one of their own. They call themselves "GP Sisters."

The women, who are in their early 20s, traveled from Boise, Reno, Denver, Syracuse, and the Salt Lake City are for the young woman they met just a couple of years ago. Cortney DeHoyos traveled from Denver, Colo. to honor Stonehocker and says she inspired her to help educate others about the illness.

"I had to drop out of college because I'm so sick all the time," said Cortney DeHoyos. "I'm constantly in and out of hospitals."

DeHoyos said having the illness can be discouraging for young people who suffer with symptoms daily.

"Sometimes people find our illness so unique and rare so it can't be real," said DeHoyos. "So we must be making it up."

"It (Gastroparesis) basically took me from being a mom to being in bed 24-7,"said Chelsea Rushton of Syracuse. "And having my parents raise my kids."

For Rushton the emotions of losing her friend are still raw. Just weeks ago, she visited Stonehocker in the hospital.

"We would text all night," said Rushton. "My husband would tell me ‘get off the phone and go to bed.' And I just couldn't."

Gastroparesis is a condition that affects all ages and races. The disease inhibits the stomach muscles' ability to function properly, which can interfere with digestion. It causes nausea and vomiting, and affects the body's ability to receive proper nutrition. Stonehocker became bedridden and was tied to a feeding tube in the hospital. Patients describe the illness as having the constant feeling of morning sickness or having the flu every day.

"It's very difficult just driving on the road. Many of us are nauseous just sitting in bed," said Maddie Cullen of Boise.
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Bedridden 18-year-old hopes treatment will help rare condition
Haley Stonehocker is a bright and charming girl who just turned 18. But the just-turned- adult is dealing with more than adulthood now.

Cullen is studying at the University of Utah and hopes to become pediatric gastroenterologist. She said Stonehocker inspired her to want to help kids suffering with Gastroparesis.

"We've already lost a few (people) this month to GP,"said Cullen. "It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."

Some say having the disease is especially heartbreaking for younger people because they say their peers just don't understand what they're going through. Some say they've lost friends because of the disease.

"You don't know if you're going to wake up and feel nauseous," said Stephanie Hyatt of Denver, Colo. "And go somewhere and have to go vomit in the bathroom and cancel on friends."

Hyatt said belonging to the online community with Stonehocker was a tremendous strength to her.

"She'd always say that I'm such a beautiful person inside and out," said Hyatt. "How I could make it through everything."

Colleen Beener sits on the board of G-Pact. She says it's not clear how many people nationwide suffer from Gastroparesis mainly because the illness is often misdiagnosed as an eating disorder.

"There are very few good doctors who understand this disease," said Beener.
"We've already lost a few (people) this month to GP. It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."
–Maddie Cullen

Beener said most people with Gastroparesis travel hundreds of miles and go to other extremes to seek diagnosis and treatment.

"There's just not a lot of understanding of this disease. There's not a lot of research going on about this disease. There aren't any good medications in this country for the disease," said Beener. "Most of us that find something that works we get it out of the country and it's not FDA approved but we do it anyway because it's the only way we can get through the day."

Dr. Troy Madsen, University of Utah, confirmed that Gastroparesis is difficult to diagnose.

"There isn't a blood test that can simply diagnose it," he said.

Madsen said the tests to diagnose the illness are invasive and can result in inconclusive diagnoses. Still, he recommends patients seek a gastrointestinal specialist to better diagnose the disease.

Tuesday, the group released green balloons at the track and field grounds of Maple Mountain High School where Haley Stonehocker was a track star. Alli Baker shared that interest with Stonehocker, who inspired her to run track and field even while suffering from her Gastroparesis symptoms.

"I always carried that never ever give up mentality that Haley always taught me," said Baker. "Mine's not as severe as hers so I was running for her and those people who couldn't do it when they wanted to."

The GP sisters took one final lap around the track for their friend Haley. It's a gesture of hope - for more education, better diagnoses and treatment so that those living with Gastroparesis will have a better quality of life.

The link to this article can be found HERE.