Find us on Google+ Gastroparesis: 2015

Sunday, April 19, 2015

Gastroparesis vs. Eating Disorders

I have talked to a lot of GPers (people with Gastroparesis) and they have told me at one time or another, that they were accused of having an eating disorder and was refused treatment. In high school, when I was sick and before I knew what I had, I was accused of pregnancy and then an eating disorder. Some people did get gastroparesis through eating disorders as well. However, I do not think they should be punished nor should we all be punished and refused treatment because of this terrible invisible chronic illness. I am going to share some stories with you that brave women have sent me. Because, they deserve to be heard and the world needs to hear them. They won't be invisible anymore.


Meghan writes,

"Hi my name's Meghan. I'm a member of the Gastroparesis Support Group (https://www.facebook.com/groups/GastroparesisSupportGroup) on Facebook. I'm interested in helping with a blog article on GP caused by an eating disorder. I had severe anorexia and bulimia for 15 years. I just got a pacemaker for the GP because the damage done is bad. I was hospitalized 10 times for my ED. My lowest weight has 76 lbs. I developed the GP about 6 years into it and had a bad experience with a GI doc who didn't believe me. My ED morphed. I was purging not because I was scared of gaining weight (I wanted to gain weight!) But the food sitting undigested in my stomach made me feel so sick. So I either wouldn't eat at all to avoid the nausea or when I got starving I would binge and purge. I'm 95lbs now. I'm not mentally in an eating disorder anymore. But the GP symptoms make me scared to eat a lot of the time. I also need partial dentures from the vomiting. I am 32.

I saw your post on the gastroparesis support group on Facebook on the difference between eating disorders and gp. I think I told you a little bit of my story, about how my severe eating disorder caused my gp. The biggest difference for me is that one (the ED) is a battle with the mind and that the other (the GP) is a battle with the body. With an eating disorder I had urges, mental urges, to restrict my food or binge and purge for emotional reasons. With GP the battle is more physical - there is nausea and pain, confusion with being both hungry and full at the same time. But there ARE still emotions connected to GP, like anger and resentment at your body. ('Damnit i love pizza and it's going to cause me to throw up but I'm going to eat it anyway it's not fair I hate this!') The problem I have is drawing the line with that. I can make myself vomit very easily just by clenching my stomach from my years of binging and purging. If i have stomach pain from the GP and know if I make myself vomit I will feel better, do I do it? The emotions attached to our food and body is hard to deal with."

According to National Eating Disorders (http://www.nationaleatingdisorders.org/general-information):

"Eating disorders -- such as anorexia, bulimia, and binge eating disorder – include extreme emotions, attitudes, and behaviors surrounding weight and food issues. Eating disorders are serious emotional and physical problems that can have life-threatening consequences for females and males."

According to the Mayo Clinic (http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971):

"Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally."


This is a story from Madison, who writes,

"I was bullied all throughout middle school, because I became friends with a girl who did drugs. She would constantly criticize what I ate, and would throw away my food, and we would go to her house so we could look at pro-ana [sic: anorexia] sites. After she got kicked out of school for using drugs, I didn't really have many friends. I was so in my head all the time and just so focused on my eating disorder. It just continued to get worse and worse until my school forced my parents to take me out of school to get a physical because I became a liability to them. Going to high school was even worse.

I would have panic attacks every day and miss probably half the week. I WAS so tired all the time that I couldn't do my homework, couldn't Do my classwork, nothing. I was too malnourished. In 10th grade halfway through I dropped out and did independent study, which I excelled in.

I abused amphetamines, which made me lose weight faster, and would spend all day at the library so I didn't have to eat. Junior year I decided to go back to school but within the first week the panic attacks started again. I had to go back to independent study.

I got into some legal trouble and my therapist told me that to avoid legal consequences, and dying, I should go to treatment. She was on the phone with my parents forever on a Wednesday and by that friday I was in an Inpatient treatment center. They discharged me at 5 weeks, and going to outpatient was too much for me. I wasn't ready to leave.

I started purging to get back into residential. They let me back in for another two weeks which really did a lot for me to break my behaviours. I successfully completed 6 months of treatment. But, I had awful nausea, dizziness, abdominal pain, and many other GI symptoms.

I turned 18, graduated from high school, and went to college to study psychology. The GI symptoms got worse and worse. I wasn't getting any emotional support. I was still depressed and still incredibly anxious and still wanting to die. Every day. I got a puppy who made me so so happy, and the only reason why I'm still here today. February 2014 I was hospitalized and bunches of tests were ran. It was gastroparesis, cause by my eating disorder. I also have osteopenia from malnutrition. I have fibromyalgia. Every day is a struggle."


I want to applaud these women for coming forward with their stories. We are all accused at one time or another of having an eating disorder so we are overlooked and undertreated. Eating disorders can be just as deadly as gastroparesis, but they are both invisible, chronic illnesses so people assume we make them up for attention. I can tell you that some of my family thinks that my illness is in my head. They think I have bad anxiety and that I have made up this illness for attention, despite tests saying otherwise. I know how it feels to be looked down on and not taken seriously by doctors, family, friends, anyone. That's why I wanted to share these women's struggles and their stories. I'd like to share more.


If you would like to share your story as well, I'd be glad to add it to this article. Please send your story to me at emilysstomach[at]gmail.com. Please let me know if I have permission to use your name or if you want me to change it. I have used real names in this article because I was allowed to. If you have any questions for the ladies above, please ask them on my wall on my Facebook page: www.facebook.com/emilysstomach and I'll see that they get your messages.

They are very brave to come forward for their stories for this article. It doesn't matter how they got GP, what does matter is that they HAVE GP and we are all in this together! No awareness, no research, no cure.


EDIT: If you are looking for help or for others like you, I've created a group to help everyone with their feelings: https://www.facebook.com/groups/GPandEDSupport/ I just wanted some place where we wouldn't judge each other and where we could talk about the things that are bothering us that no one else really understands.

Thursday, March 19, 2015

How to Protect Yourself from Gastroparesis Scams

How to Protect Yourself from Gastroparesis Scams

I've been noticing more and more scams that keep popping up in groups I'm in, saying things like if you change your diet and take this pill, your gastroparesis will be cured. A lot of people fall for these scams. I want to prevent that. First off, gastroparesis cannot be cured. It's vagus nerve damage. So, I'm going to spend some time talking about possible things that can slow your motility down even more, like medication, and I'm going to talk about what causes gastroparesis. I would also, at the end, like to offer you ways to protect yourself in case of a scam, because they're all over the place. Just type in "gastroparesis cure" and you'll get youtube videos, websites, all kinds of things. I just don't want any of my friends of my gp family to be taken advantage of because you all mean a lot to me. Without you, I'm not sure I'd have the strength to leave the bed most days. Now, let's talk about this vagus nerve.



That Little Thing Called the Vagus Nerve

Gastroparesis can be caused by a lot of things - abdominal surgery, stomach viruses, diabetes. If you do have nerve damage, the nerve damage will not repair itself. Think of this scenario: you injured your knee playing basketball. You managed to move your kneecap out of joint but kept playing anyway. Then, when you got to the hospital, the doctors fixed your knee but you still have pain. The doctors tell you that you now have nerve damage. If the nerve damage in your knee will never heal, how can the vagus nerve in your stomach ever heal? The nerves that were once functioning aren't functioning anymore.

A pill, diet change, exercise change - sure they can all help manage your gastroparesis but it will never be cured. I'm considering doing a stomach bypass to try and make it so that I can eat before I vomit, tear my esophagus, and bleed to death. So, my doctor is pushing this surgery hard and I'm scared. It's OK to be scared. Gastroparesis may never heal, but you have friends and loved ones who support you. If not, I have a whole list of resources in this blog saying that you do. You can always find me on my Facebook Page: www.facebook.com/emilysstomach. I'd be happy with a "like" too, if you can spare me one. =)


Image taken from: http://www.yoursurgery.com/procedures/duodenum/images/Duod3-A.jpg


Here are some facts about vagus nerves: http://www.md-health.com/vagus-nerve.html


Slower Motility and Gastroparesis Causes

People can't be cured from gastroparesis, except in certain circumstances. There are certain medications that can cause decreased motility function like narcotics, that when you come off of them, your stomach will work again. There are other medications that will do that as well. According to The American College of Gastroenterology (http://patients.gi.org/topics/gastroparesis/) , these are the medications that will slow down motility:

"Narcotics
Tricyclic antidepressants
Calcium channel blockers
Clonidine
Dopamine agonists
Lithium
Nicotine
Progesterone"


Image taken from: http://blog.doctoroz.com/wp-content/uploads/2013/09/pills-multicolored-original.jpg



The website also goes on to state:

"There are many causes of gastroparesis. Diabetes is one of the most common causes for gastroparesis. Other causes include infections, endocrine disorders like hypothyroidism, connective tissue disorders like scleroderma, autoimmune conditions, neuromuscular diseases, idiopathic (unknown) causes, psychological conditions, eating disorders, certain cancers, radiation treatment applied over the chest or abdomen, some chemotherapy agents, and surgery of the upper intestinal tract. Any surgery on the esophagus, stomach or duodenum may result in injury to the vagus nerve which is responsible for many sensory and motor (muscle) responses of the intestine. In health, the vagus nerve sends neurotransmitter impulses to the smooth muscle of the stomach that result in contraction and forward propulsion of gastric contents. If the vagus nerve is injured by trauma or during surgery gastric emptying may be reduced. Symptoms of postoperative gastroparesis may develop immediately, or months to years after a surgery is performed.

It is important to realize that medications prescribed for a variety of conditions may have side effects that cause gastric emptying to slow down. The most common drugs that delay stomach emptying are narcotics and certain antidepressants. Table 1 lists more medications that may delay stomach emptying. If possible, patients having dyspeptic symptoms, vomiting or early fullness should discontinue the offending medications before undergoing any motility tests. Fortunately, gastric emptying resumes and symptoms improve when medications causing ‘pseudo-gastroparesis’ are stopped. It is important to have the names of all your medications recorded and with you when you see a physician for evaluation of gastrointestinal symptoms.
People with eating disorders such as anorexia nervosa or bulimia may also develop delayed gastric emptying. Gastric emptying may resume and symptoms improve when food intake and eating schedules normalize."






Images taken from: http://davaoaccountant.com/wp-content/uploads/2012/11/scam.gif




Here Are Ways to Protect Yourself Against Scammers


I just want you to be able to protect yourself from these scams. We're all lonely, miserable, and this illness is hard to live with. But, we can still look out for each other and not fall prey to these scams. So, if you see one in your group or on a page, please report that person to an admin and/or facebook.


Here are some ways to protect yourself against scams from Scam Watch (http://www.scamwatch.gov.au/content/index.phtml/tag/howtoprotectyourself):


"How to protect yourself. Almost everyone will be approached by a scammer at some stage. Some scams are very easy to spot while other scams may appear to be genuine offers or bargains. Scams can even take place without you doing anything at all.

Most scams need you to do something before they can work. You may send money to someone based on a promise that turns out to be false. You may give your personal details to people who turn out to be scammers. Some scams rely on you agreeing to deals without getting advice first or buying a product without checking it out properly.

The simple tips below will help you protect yourself and your family from scams. Scams can cost people a lot of money and cause a great deal of distress. By following these simple tips, you can protect yourself against scams.



Golden rules

If it looks too good to be true—it probably is.
ALWAYS get independent advice if an offer involves significant money, time or commitment.
Remember there are no get-rich-quick schemes: the only people who make money are the scammers.
Do not agree to offers or deals straight away: tell the person that you are not interested or that you want to get some independent advice before making a decision.
You can contact your local office of fair trading, ASIC or the ACCC for assistance.
NEVER send money or give credit card or online account details to anyone you do not know and trust.
Check your bank account and credit card statements when you get them. If you see a transaction you cannot explain, report it to your credit union or bank.
Keep your credit and ATM cards safe. Do not share your personal identity number with anyone. Do not keep any written copy of your PIN with the card.



Digging a little deeper

Do not let anyone pressure you into making decisions about money or investments: always get independent financial advice.
Read all the terms and conditions of any offer very carefully: claims of free or very cheap offers often have hidden costs.
Make sure you know how to stop any subscription service you want to sign up to.
Be very careful about offers for medicines, supplements or other treatments: always seek the advice of your health care professional.
Remember there are no magic pills or safe options for rapid weight loss.
Beware of products or schemes that claim to guarantee income or winnings.
If someone offers you an investment or other financial service, ask for their Australian Financial Services Licence number: check this with ASIC.
Be wary of investments promising a high return with little or no risk.
Beware of job offers that require you to pay an upfront fee.



Protect your identity

Only give out your personal details and information where it is absolutely necessary and where you have initiated the contact and trust the other party.
Destroy personal information, don’t just throw it out. You should cut up, burn or shred old bills, statements or cards so scammers can not get your personal details from them later.
Treat your personal details as you would treat money: don’t leave them lying around for others to take.
Order a free copy of your credit report every year to make sure no one is using your name to borrow money or run up debts.



Sending or transferring money

Never send money to anyone you are not totally sure about.
Do not send any money or pay any fee to claim a prize or lottery winnings.
Money laundering is a criminal offence: do not agree to transfer money for someone else.
Make sure that cheques have been cleared by your bank before transferring or wiring any refunds or overpayments back to the sender.
Do not pass on chain letters or take part in pyramid schemes: you will lose your money and could lose your friends.



Dealing with a face-to-face approach

If someone comes to your door, ask to see their identification. You do not have to let them in and they MUST leave if you ask them to.
Contact your local fair trading agency if you are unsure about an offer or trader.
Remember that family members and friends may try to involve you in a scam without realising that it is a scam: you should seek independent advice (from a lawyer or financial adviser).



Telephone traps

If you receive a phone call out of the blue, always ask for the name of the person you are speaking to and who they represent.
Do not give your personal, credit card or online account details over the phone unless you made the call and the phone number came from a trusted source.
It is best not to respond to text messages or missed calls that come from numbers you don’t recognise.
Be careful of phone numbers beginning with 190. These are charged at a premium rate and can be very expensive.
Look out for SMS and MMS numbers that start with 19. These are charged at a premium rate (sometimes even for receiving a message) and can be very expensive.



Dealing with suspicious or unsolicited offers sent by email or SMS

Do not open suspicious or unsolicited emails (spam): delete them.
Do not click on any links in a spam email or open any files attached to them.
Never call a telephone number that you see in a spam email or SMS.
NEVER reply to a spam email or SMS (even to unsubscribe).



Internet tips

Talk to your internet service provider about spam filtering or, alternatively, purchase spam-filtering software.
If you want to access an internet account website, use a bookmarked link or type the address in yourself: NEVER follow a link in an email.
Install software that protects your computer from viruses and unwanted programs and make sure it is kept up-to-date.
Beware of free websites and downloads (such as music, adult sites, games and movies). They may install harmful programs without you knowing.
Check the website address carefully. Scammers often set up fake websites with very similar addresses.
Never enter your personal, credit card or online account information on a website that you are not certain is genuine.
Never send your personal, credit card or online account details by email.
Try to avoid using public computers (at libraries or internet cafes) to do your internet banking.
Do not use software on your computer that auto-completes online forms. This can give internet scammers easy access to your personal and credit card details.
Choose passwords that would be difficult for anyone else to guess.



Protecting your business

Never give out or clarify any information about your business unless you know what the information will be used for.
Never agree to any business proposal on the phone: always ask for an offer in writing.
Try to avoid having a large number of people authorised to make orders or pay invoices.
Always check that goods or services were both ordered and delivered before paying an invoice.
Make sure the business billing you is the one you normally deal with.
If you are unsure about any part of a business offer, ask for more information or seek independent advice.



Keeping children safe online: Cybersmart

The Cybersmart program is a national cybersafety education program managed by the Australian Communications and Media Authority (ACMA). It provides a comprehensive range of information, resources and presentations designed to meet the needs of children, parents, teachers and library staff.

The ACMA Cybersmart website is home to all its cybersafety resources, research and activities. For more information, visit Cybersmart or contact the Cybersafety Contact Centre on 1800 880 176."

Wednesday, February 25, 2015

Frequently Asked Questions Regarding Gastroparesis

Frequently Asked Questions about Gastroparesis


1. What is Gastroparesis?

The Mayo Clinic defines Gastroparesis as, “Gastroparesis is a condition in which the muscles in your stomach don't function normally. Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.”

Link found here: http://www.mayoclinic.com/health/gastroparesis/DS00612




2. How do you get Gastroparesis?

The Mayo Clinic Writes, “It's not always clear what leads to Gastroparesis. But in many cases, Gastroparesis is believed to be caused by damage to a nerve that controls the stomach muscles (vagus nerve). Other possible causes are abdominal surgery, Diabetes, Idiopathic (no known cause), a virus, and being born with a stomach that function properly. It can also be cause by narcotics because they can slow down motility.” On a personal note, mine was due to a stomach virus. I was in the hospital for eight days.

Link can be found: http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=causes



3. What are the signs and symptoms of Gastroparesis?

The Mayo Clinic states that,
“Signs and Symptoms of Gastroparesis:
Early Satiety (feeling full after just a few bites)
Heartburn
weight loss
weight gain
Abdominal bloating
Abdominal pain
Diarrhea
Constipation
Erratic blood glucose levels (mainly in diabetes)
Lack of appetite
Gastric reflux
Spasms of the stomach wall
Chronic nausea
Vomiting (often of undigested food)
Inability to tolerate dietary fats.”

Link can be found here: http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/symptoms/con-20023971



4. How do you treat Gastroparesis?

The Mayo Clinic writes, “Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes.”

I have written a blog entry on how to cope with emotional and physical pain of Gastroparesis. Here is an excerpt,

“This is a question that I've been asked a lot. I have been doubled over in pain, with no relief in sight. So, how do I cope and what do I do to make the pain easier to handle?”


You can find the ways to treat Gastroparesis here, without narcotics. Link here: http://emilysstomach.blogspot.com/2013/04/how-to-cope-with-gpdtp-pain-emotionally.html

This link will also help you if other treatments don’t seem to work: http://emilysstomach.blogspot.com/2013/04/what-can-be-done-when-gastroparesis.html

This link will help you with natural remedies for pain around the house: http://emilysstomach.blogspot.com/2013/04/painkillers-in-your-kitchen-alternative.html





5. Can you die from Gastroparesis?

Yes. If it gets severe enough people can get very malnourished and without proper treatment options and proper nutrition people can die from complications from Gastroparesis. Gastroparesis alone cannot kill you but it can do horrible things to your body if you are starving.

Link: http://emilysstomach.blogspot.com/2012/10/18-year-dies-from-gastroparesis.html





6. Does Gastroparesis go away?

The only way Gastroparesis will go away is when it’s been caused by narcotics or medication. Nerve damage and muscle damage is typically permanent.

See webMd on nerve damage: http://www.webmd.com/brain/nerve-pain-and-nerve-damage-symptoms-and-causes





7. Is there a cure for Gastroparesis?

The Mayo Clinic says, “There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.” You have to eat low fiber and low fat foods. I have several gastroparesis friendly recipes on Pinterest and also juicing recipes: www.pinterest.com/chikensrule


Link found here: http://www.mayoclinic.com/health/gastroparesis/DS00612



8. What should you need to know after being diagnosed with Gastroparesis?

I know that when I was finally diagnosed in March of 2012, I did two things that really helped me. The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made this entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.

More ideas can be found on the link here: http://emilysstomach.blogspot.com/2013/04/advice-for-newly-diagnosed-with-gpdtp.html

Also, here: http://www.emilysstomach.com/2013/04/youve-been-diagnosed-with-gastroparesis.html






9. What is the Gastroparesis Diet?

The Gastroparesis Diet can be found here: http://www.emilysstomach.com/2014/01/the-gastroparesis-diet.html




10. Is there more than one type of Gastroparesis?

Yes, there are! There are two types of Gastroparesis. The first is idiopathic gastroparesis, which means the doctors are not sure what caused it. The next one is diabetic gastroparesis, where diabetic neuropathy or other causes can trigger gastroparesis by damaging the vagas nerve (http://en.wikipedia.org/wiki/Vagus_nerve).

Link here: http://en.wikipedia.org/wiki/Gastroparesis



11. Where can I find assistance to help me with finances with Gastroparesis?

I have compiled a list of financial ideas for those currently struggling with money for treatments with the help of the Emily's Stomach's Facebook Page. The blog entry has links in all caps that you can click on that will take you to that page.


The link is: http://emilysstomach.blogspot.com/2013/04/financial-assistance-ideas.html



12. Why are the Gastroparesis colors green and yellow?

As taken from G-PACT’s Facebook Page: From G-PACT's Facebook Page:

"Most people think that green and yellow became the colors for DTP because green is associated with nausea, vomit, bile, and a greenish appearance when sick. Actually, G-PACT places a stronger meaning behind the colors. We gave them a lot of consideration when we selected them to be the official colors for our use to represent gastroparesis. They represent how we want patients to see the future and what we are all trying to accomplish with hope, strength and growth towards better treatment options. We have seen a lot of growth in this field since our founding in August of 2001, so the green is appropriate. Why?

Green indicates growth. We are growing towards a cure and awareness and research is growing. It's a color of hope. When things start turning green outside it indicates the end of the cold, long, dark days of winter. The first sign of green plants and grass indicates we are coming out of a time if darkness and coldness and entering a phase of growth and brightness. It is a color that shows brighter and beautiful days are ahead. There is something really encouraging when you see that first blade of green grass or green leaf peaking [sic] through after months of brown fields, trees, and no growth.

G-PACT is a grassroots organization meaning that we started with a small handful of patients who were coming out of a period where there was very little knowledge and very little hope towards any kind of understanding or a cure. We knew something needed to be done to provide services to patients to get through the tough times now, and provide hope as we also fight for awareness and research and help bring about greater understanding into this condition. Our initial motto was "Striving towards brighter days of treatment, knowledge, and a cure." We have grown into a much larger scale, now making an international impact and have provided hope to so many as they try to cope until we do find the cure.

Yellow was also an important color for us. Our logo is a sun to indicate hope and a brighter future ahead. The sun is a crucial factor that helps the plants grow. It brightens the days and brings with it the nutrients, strength, and oxygen needed to supply the plants with what they need to be able to grow and thrive."