Honor Patient: Nicole

Continuing with our honor patients, this week, we have Nicole Principe sharing a little about her journey.


Hi I am Nicole and I have Digestive Tract Paralysis in my stomach (Gastroparesis) and intestines (Intestinal Dysmotility). Unfortunately I am TPN (IV nutrition) fed due to my motility conditions. I have a GJ feeding tube for medication and draining. I use a Hickman central line for my TPN, fluids, and some of my medications. Someday, I hope to get back on tube feeds! Not being able to eat is definitely difficult. I miss it so much but things like gum and lollipops help me some when I can tolerate them! 🍭 I love to watch shows on Netflix, read, play games with my cousins and spend time with in person or online with my fellow friends with chronic illness, you all get me through the days! 😊💜💙💚💛

Happy #DigestiveTractParalysisAwarenessMonth 💚💚💚💚

Meet the Team: Colleen Beener

Throughout the month you’ve learned a little more about our team members! This week, we introduce you to Colleen Beener, our Operations Director!


What is your current role with G-PACT?
I am the Operations Director/Treasurer

What brought you to G-PACT?
In August 2001, my GI doc wrote “gastroparesis” on office notes and showed me to the door.  No explanation after 3 years of me begging him to find out what was wrong with me.  I ran home and googled it, only to find very, very little information.  But I did find a Yahoo support group and joined it.  I was member #230.  It was the only online support group at the time. G-PACT was born 9 days later.
-How long have you been with G-PACT?
I started as a moderator of the Yahoo group in 2002 and then joined G-PACT as a volunteer in 2004.  I began as a general volunteer but I used my human resources experience to organize and streamline the volunteer hiring process and took over as  Volunteer Coordinator.  I assumed my current position in 2012.
-If you were stranded on a desert island and could only take three things, what would they be and why?
I only need one thing, although it has many parts.  My family – husband, kids, grandkids and my cat.  They are my reasons to keep fighting.
-Who has inspired you most in your life and why?
In 65 years, I have had a lot of people inspire me in different ways.  But the most important was Mrs. Yeoman, my guidance counselor from grades 7-12.  My home life was not very good and she saw something in me that made her take an interest.  She made me believe in myself and my abilities.
-What’s been your biggest hurdle since your diagnosis?
Not being able to work.  So much of my self-worth was tied up in the work I did.  Plus, I LOVED my job.  But I eventually realized that new things were opening up as a result of my illness.  Some of my most cherished experiences happened only because I was no longer able to work.
-What’s one piece of advice you’d share with someone newly diagnosed?
Accept that there is no cure and treatments are limited.  Treating symptoms at this point is the best we can usually get and not accepting that will make it more difficult for you to adjust.  But, do not give up and do not give in.  Find a doctor who will work with you and for you to get you to the best health possible.  Keep looking until you find that doctor.  Be prepared to fight for the care you deserve!
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Honor Patient: Marie Clune

Last week, we shared our first patient story from a member of our community. This week, we’re sharing a little more from our Public Relations director, Marie.


I can vividly remember the first month of being sick, even though I did not realize I would be chronically ill at the time. I was in a great place in my young life and was going to school on an academic scholarship, I had a work-study position at the gym (perfect since I loved working out), I had great grades, friends, and opportunities ahead of me.
Everything was falling into place for me to have a “normal” college experience, graduate, get a job as a Licensed Clinical Social Worker, and live my best life. Looking back, I should have known that I was due for my world to be shaken up a bit!
54259D91-51F2-4222-BEA4-249732527F6COver Thanksgiving break, I went to visit my family and left with a terrible case of Norovirus. I was able to make it back to campus and noticed my stomach felt a little funky. I grew up having a sensitive stomach, so at first this seemed to be somewhat normal. A few hours passed and I was back in my dorm vomiting everything I had eaten and drank that day and experiencing diarrhea. I had just moved into a single dorm, so I did not have a roommate and didn’t know anyone in my building. My parents were four hours away. I remember actually thinking I was dying. This progressed for about 10 hours and at this point, I was passed out on the floor by the toilet with my mom on the phone. She said I needed to call 911 and go to the hospital, something that was foreign to me at the time. I gathered my strength to call 911, explain the situation and tell them where I was, and then I proceeded to pass out again, only to wake up in the hospital a few hours later.
Fast forward a bit, I was diagnosed with chronic Gastroparesis and I have also been diagnosed with Intracranial Hypertension. I am one of the lucky ones as I have been able to build a career and my managers have always been generally understanding of my special requirements (aka long bathroom breaks at times). I now work for a software company in Manhattan and live with my husband and two cats.
On the surface, my life looks pretty good, and it really is quite good, but there is so much that people do not see or realize about me and what it took to get where I am.
There have been countless days I have pushed through my work day and as soon as it ends, I have gone right to the ER to spend the night. The following morning I am back in my office and while I look tired, no one realizes where I spent the night before.
I have to make sure I get 8 hours of sleep a night to be functional, so this means I often miss out on social activities that are normal for a 24 year old. My husband suffers from this as well when he has to cancel to take care of me.
It’s extremely difficult and I wouldn’t wish what I go through on anyone, but I know there are a lot of us in the same boat. I have a few key pieces of advice for anyone with chronic illness that is trying to still have a career/ social life, etc. Of course, please keep in mind there are varying levels of these illnesses and sometimes it is impossible to do what I list below. I am highly functional now, but there was a time when the way I live my life now would not have been possible.

 Marie’s Chronic Illness Survival Guide


● Learn how to say “No” confidently and unapologetically. You don’t have to say anything else and everyone just has to accept it. The more you say “No” the more comfortable you will become and the easier it will be to say it in situations you know are not good for you or your goals. Prioritize what is best for you to be healthy and happy. I promise this will also help you be a better friend, partner, daughter, son, etc.
● Create a living, working document where you outline your goals and steps to get there. Keep it high level. For example, “Get New Job in Marketing” can be your goal and then steps to get there can be “network with contacts already in marketing”, “edit resume”, “Get 8 hours a night of sleep so I have energy for the job search”, “Visit Primary Care Doctor and all specialists needed before I get a new job so I am ready upon beginning”, etc. Once you reach one goal, move onto the next. Don’t bite off more than you can chew, it’s not worth it or sustainable long term.
● This is the “Cover Your Butt” rule. At work, make sure your managers have an idea of what you are going through, as well as HR. This way, if you ever need to request work from home or if you disappear for an hour into the bathroom, or need to go home early, they know it is probably related to your illness and not just you going to interview somewhere else, for example. If you can help it, I recommend not bringing this up until after you have accepted the job and paperwork is signed and your probation period is over.
● Try to be as flexible and adaptable as possible since living with a chronic illness almost forces you to be. There will be cancellations, changes in diagnosis, etc., and it is important to be ready to adjust when these things come up. Developing Plan B and C in addition to Plan A is critical.
● Form a support network online or in person (ideally both). Find good people who will be there for you through thick and thin. Include a few people without chronic illnesses as well as long as they are supportive and understanding of your situation. It helps to have some “normalcy” in your life and connection to the world that others experience.
● REST when you need it! When your body tells you to rest, within reason, do it. I have a rule where I do not do anything social on weeknights so I can just come home, relax, and recharge. There are some weeks where I have to travel for work, so I need to take advantage of rest when I have it. My friends understand I will not be able to go out on a Wednesday night until 2am unless it is a very special occasion. See #1- get comfortable saying no to things that will be detrimental to you personally even if it is normal for your age.

Meet the G-PACT team

Last week, we introduced you to one of our members of the team, Carolanne. To continue to get to know the team, today we’d like to share a little more about our Public Relations Director, Marie Jefferson-Clune!


What is your current role with G-PACT?
Director of Public Relations

-What brought you to G-PACT? 
I have been following the facebook page since my diagnosis in 2014, but Samantha Smith recruited me for this position and I was excited to join the leadership team.

-How long have you been with G-PACT?
2-3 months or so

-If you were stranded on a desert island and could only take three things, what would they be and why?
Other than my two cats and husband? I would take Gaviscon (for real, it is that important in my life), my phone with music downloaded as I usually listen to music all day every day, and a kayak for entertainment.

-Who has inspired you most in your life and why?
My mother has inspired me the most in life and continues to inspire me daily. She has always had health conditions and she is the first person who taught me how to advocate for myself in doctor’s offices and hospitals. She learned this skill when she was her dying mother’s caretaker, a situation she handled with grace and love when she was just 24 years old. She has recently lost 60lbs in an attempt to be healthier for herself, her kids, and her future grandkids. She is one of the most selfless people I know.

-What’s been your biggest hurdle since your diagnosis?
My biggest hurdle since my diagnosis has no doubt been juggling my career and my illness. I work full time at software company based out of Manhattan and often work long days, plus a commute back home to where I live in New Jersey. I do my best to let my work be the focus and try to avoid anyone at work ever finding out about my illness, even if I was just in the ER the night before a work day or I spend an hour in the office bathroom during a flare up. As open as I am with it in my personal life, these are the things that make you miss promotions and opportunities, which is very sad. My goal is to reach a leadership role in my field and be the change I want to see within corporate America. In the meantime, the juggling continues, but I truly believe I am blessed beyond belief to be able to do this, even if I pass out asleep as soon as I get home most nights. There was a time a few years ago when I was bedridden and was told I would be on disability for the rest of my life.

-What’s one piece of advice you’d share with someone newly diagnosed?
I would tell them to try their best to NOT take everything the doctor’s say at face value. I have been diagnosed with some scary things and the doctor’s can be the worst people to talk to during that time. You need to collect all the information you possibly can from them, but make sure to get second and third and fourth opinions. Listen to your gut. Doctors usually don’t know a whole lot about chronic illness and can give uneducated, misleading information that causes us to feel like our life is over. Your life is not over when you get this diagnosis, it is simply going to change. Also, consider bringing someone you trust to doctor’s appointments to take notes and be a second set of eyes/ears.
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Honor Patient: Rachel Briggs’ Story

Each week this month here at the Pact Blog, we’re featuring a story from a member of our community. We have enjoyed getting to know these people, and know you will too. First up, Rachel Briggs.


My story begins when I was 12. I suffered with a very severe eating disorder (Anorexia subtype purging) and I only recovered 4 years ago. I believe this was the start of my chronic illness journey.

I was in and out of treatment centers all over the country. When I went to college things started to get really bad. I was in college for Pre Med. My dad is a doctor, and I wanted to follow in his footsteps. I started getting a lot of GI symptoms; like lack of appetite and quite a bit of vomiting. The vomiting came out of nowhere. I remember standing in my apartment building waiting for the elevator and all of a sudden I vomited on the floor. I started to see quite a few doctors as I was loosing a lot of weight very fast.

The first GI doctor I saw said it was IBS and that I had Celiac disease. I continued to get sicker. I went to a different GI in the same hospital and she ordered an endoscopy. I had eaten soup the day before at around noon and when they did the scope the next day she found the soup still in my stomach. She scheduled a gastric emptying study. I did the study and while I continued to wait for my results I was getting sicker and sicker. I ended up in the hospital with sepsis because food stayed in my stomach for so long it got formed a bezoar, and caused me to be septic.

BB683A43-57BF-4CBB-AD0C-EC17EB1E6595Finally I saw a GI who specializes in complicated GI cases and he admitted me immediately and the next day I got an NJ tube. Things started to get much better. About 3 months later after my weight became stable, I had surgery to get a GJ tube. It was a painful surgery but so worth it. My nose and throat had started to hurt so bad from the NJ tube. I had been on tube feeds for about 2 years when I started not being able to tolerate the feeds. I began to lose weight again fast. I saw my GI again and he immediately admitted me again and placed my double lumen hickman line on December 5, 2018. I started TPN on that day.

TPN saved my life and continues to let me do the things I can to feel like a normal person. I try and support other people who are going through similar things on Instagram. My Instagram is @dyingto_eat. I want to provide support to anyone who is going through a hard time and show them love and compassion. None of us deserve to go through this and having a good friend to talk to makes all the difference. I have a few close friends that I have met through the chronic illness community on Instagram and I guarantee that without them I wouldn’t have made it this far. They are an amazing group of friends and I am so thankful for them! Even if I can only help one person my whole chronic illness will have been worth it. I have a lot of love to give and it brings me such happiness to put a smile on someone’s face. WE are WARRIORS!!!

Meet the G-PACT team

Happy Awareness Month! To begin the month, we’d like to formally introduce you to some of our core team members here at G-PACT. Our team is made up of volunteers, most of whom are patients themselves. We work pretty hard behind the scenes, so we’re putting the spotlight on those who help keep us up and running. We asked our team to answer some questions to help everyone get to know them a little better. To start, we introduce our Social Media Manager, Carolanne!

What is your current role with G-PACT?
Social Media Manager
What brought you to G-PACT?
G-PACT was the organization I looked to when I first got diagnosed. The website was full of amazing resources and the support groups were (and still are!) priceless to me. I got involved in Awareness Month first and when I was asked to be Social Media Manager I was very honored.
-How long have you been with G-PACT?
Almost a year!
-If you were stranded on a desert island and could only take three things, what would they be and why?
A notebook with pen, endless zofran ODT, Polaroid camera with film.
Who has inspired you most in your life and why?
Coretta Scott King. Not only do we share a birthday, but she was an author and activist- two things I also consider myself to be. She lived through so many hardships and handled them with grace. She turned tragedy into triumph by taking action.
-What’s been your biggest hurdle since your diagnosis?
My biggest hurdle has been grieving my former life and learning to accept my limitations.
What’s one piece of advice you’d share with someone newly diagnosed?
Be involved in the support groups online. You will find a family waiting for you with open arms ready with all the compassion, empathy and advice you could ever hope for.

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Make sure to keep checking back throughout the month for more stories, patient spotlights, and to meet the rest of the team!

Are you nauseated?

Nausea is one of the most common symptoms when dealing with gastroparesis and similar digestive diseases. Check out our guest post from Double Wood Supplements below on some ways to handle nausea.


Nausea is one of the most common ailments and symptoms of illness. Much like we use the terms “cold-like illness” and “flu-like symptoms” to describe a wide-but-familiar set of healthy symptoms, nausea is a universally recognized feeling with a wide variety of causes.

From mental stimuli like vertigo, dizziness, shock, and stress to physical causes like viruses or food poisoning, nausea is one of the ways your body tells you that something is amiss. The sensation ‘nausea’ is something from a mild stomach ‘dizziness’ or discomfort to the strong urge to vomit.

Nausea may be acute and clear quickly, or it can be prolonged. It is experienced at a range of intensity, from low-grade nausea to extreme and debilitating bouts.

Acute nausea is typically quick to resolve, regardless of the cause. It may stem from problems in the brain or organs of the upper gastrointestinal tract (esophagus, stomach, small intestine, liver, pancreas, and gallbladder).

Prolonged or recurring nausea also may be caused by diseases of many organs outside of the gastrointestinal system. The diagnosis of the cause of prolonged nausea is not always easy, but is quite important given that it may be the most obvious sign of a serious underlying condition.

All stimuli that cause nausea originate in the vomiting center in the brain, which gives rise to the sensation of nausea and triggers the physical act of vomiting if and when it is necessary.

Nausea itself is the unsettling feeling of stomach discomfort, vague internal anxiety, and dizziness. This may be the beginning of the brain’s subconscious drive to induce vomiting, which is a more obvious and direct effect of nausea.

Causes of Nausea

Nausea, which is the sensation associated with the involuntary reflex that causes vomiting, can be caused by a wide variety of factors. When seeking to treat nausea, it is important to try to identify potential causes.

The involuntary reflex that signals your body to vomit or feel nauseous stems from a wide variety of sensory inputs and nervous responses. These include directly obvious experiential stimuli, like dizziness, taste, smell, fear or other extreme emotions, pain, and direct bodily injury that induces pain or involuntary responses.

In these cases, one can assume that nausea or vomiting is a direct result of an experience, which means it will likely resolve on its own once the stimuli subside.

However, a large amount of cases of nausea are caused by more insidious internal factors like viruses, infections, food poisoning, diseases in the stomach, gallbladder, appendix, or other digestive glands, alcohol consumption, chemical imbalances, or even brain injuries or diseases which begin to wreak havoc on all involuntary response systems.

These cases may be relatively mild, as in the case of brief stomach viruses, or can be hugely dangerous if triggered by more serious underlying factors or if they lead to long-term nausea and vomiting which can cause potentially-lethal dehydration or malnutrition.

Understanding the cause of nausea is important, because different ailments require different treatments. However, the overall sensation of nausea can be addressed through a number of treatments which provide relief from the unsettling feeling.

How To Treat Nausea

If your nausea is due to an immediate external factor like motion sickness from a car or roller coaster, a disgusting taste or smell, or a shocking experience, the best nausea treatment is simply to remove yourself from the situation and continue taking deep breaths.

Nausea often leads to hyperventilating because the body’s subconscious mechanisms are competing for power–the brain is asking the stomach to remove something unwanted while you may be consciously fighting against it, which leaves other secondary responses like breathing regulation in limbo.

Even motion sickness and disgust can benefit from many forms of treatment, including bracelets designed to minimize motion sickness and nausea, mild fizzy drinks like Sprite, focusing on a fixed point and controlling breathing, and any series of natural remedies like chamomile tea or other generally calming but mild drinks.

More severe nausea, especially if caused by a virus, infection, or food poisoning may benefit from medical treatment, including generalized stomach-settling medicines like Pepto Bismol or more targeted anti-nausea drugs like Dramamine. Each works somewhat differently–either by calming the contents of the stomach or by targeting neural responses that create nausea–so different patients and types of nausea will have varying degrees of success with each.

For most mild, acute cases of nausea, managing symptoms is enough to allow your body to naturally overcome the underlying issues. A nausea medicine and focus on staying hydrated (especially if vomiting is present) are all that is needed to make it through most stomach viruses or bouts of food poisoning.

However, if the nausea presents for a prolonged period of time, it may be a sign of an underlying issue. Whether the vomiting is extremely severe or nausea is low-grade but persistent, it is advised that patients seek medical attention when the nausea seems to be ‘out of the ordinary.’

Always err on the side of caution when uncertain about the cause, severity, or duration of any illness. In the case of nausea, it may be the only directly-identifiable symptom of an underlying issue.

Here’s a helpful video on some home treatments that can help nausea.

How Long Does Usually Nausea Last?

For most cases of nausea, a bad smell, mild case of food poisoning, hangover, or dizziness from a ride in a vehicle are easy to overcome with a reasonable amount of time and common treatment options.

Even more pronounced cases caused by a stomach virus are typically resolved within a few days, with minimal complications as long as ample focus is placed on hydration and rest.

Cases that may require immediate medical attention include nausea induced by injury (especially head trauma!) and cases where a direct link is suspected between an ingested food or product that may be poisonous or contaminated with a severe virus like Salmonella or E. Coli.

In many cases, illness severity and associated complications will make it obvious if the nausea will resolve on its own or requires more extensive treatment. For most patients, the most pressing medical need associated with nausea and vomiting is hydration; it can be difficult to ingest ample fluids during times of extreme nausea, which may necessitate intravenous (IV) fluids simply to combate the far more dangerous complications of dehydration.

Conclusion

Nausea is an inconvenient but nearly universally-experienced feeling. Most people become familiar with the severity and effective treatments of nausea through life experience; however, understanding the stages, treatment options, and potentially serious implications of nausea is important as one makes an informed plan for how to treat current or future episodes of nausea.

Article courtesy of Double Wood Supplements. Click Here to see the original post on their site.

DDNC 2019

Each year, the digestive disease national coalition puts on an event in Washington, D.C. In March. It’s a two day event where patients, doctors, and other representatives get together and speak at the house and senate. Together, we all advocate for better healthcare. Click here to read a recap of our PR director Samantha’s first experience at the DDNC. Info for this years forum is below:


“The DDNC 2019 Spring Public Policy Forum will be held on Sunday, March 3rd and Monday, March 4th, 2019. Register here! Registration will close on Tuesday, January 29th, 2019. The event will be held at the Phoenix Park Hotel in Washington, D.C.

The DDNC Spring Public Policy Forum is a two-day advocacy conference which brings together patient advocates, health care providers, and industry representatives from the major national voluntary and professional societies concerned with digestive diseases. Attendees will hear from leaders in the digestive disease community and discuss and promote public policy related to the theme for this year’s forum, “Patient Access in the Cost Shifting Era.”

Patients who require financial assistance with travel and lodging for this event should fill out the attached patient stipend ddnc ppf 2019 stipend application_2 and return it to Peter Herzog at herzog@hmcw.org before the January 29th deadline.

Please contact Peter Herzog at herzog@hmcw.org or (202) 544-7497 if you have any questions.”

Consider joining G-PACT and many others in DC. Together, we can make a difference!

Season of Thanks

Not long ago, we asked our GP community to share what they are thankful for. When living with chronic illness, it can get easy to see the struggles, but it’s important to share our victories, and what we’re thankful for. Here is what the community had to say:


I am thankful for my good days and I am thankful for my friends and family (especially my husband) who check in on me and take care of me when I am too sick and weak to care for myself.

I am so very thankful that I only had my feeding tube for 7 months. Thankful for my doctors who saved my life.

We are thankful for organizations and foundations to provide help for all those unanswered questions. We are thankful for not only our families, friends, organizations, foundations but for every single person that has helped spread awareness of these types of diagnoses.

Thankful that my family understands. Thankful that I am not as bad as I feel at times. And thankful I have people who share and care like this group.

I know it sounds weird, but I am thankful to have these chronic illnesses (Gastroparesis being one of them). They forced me to reevaluate my life priorities and get rid of toxic people. I’m starting school in January thanks to GP!

I’m thankful for my life and I am so beyond thankful for my GP family. God has blessed me.

Thankful for being able to reasses the meaning of a good day.

I’m thankful for the tube that saves my life, and my family that supports me.

 

This time of year can be tough for those with digestive tract paralysis diseases. These gatherings can be so focused on food while many of us are unable to eat. A little extra self care, bring whatever treats you can safely eat, and only do what you can.

GP & Dehydration

Dehydration is a common occurrence for those who have gastroparesis, and can be difficult to deal with. Pact Blog writer Nancy writes about what exactly dehydration is, and what you can do about it!


Gastroparesis patients frequently suffer from episodes of vomiting and/or diarrhea, depending on symptoms. These episodes can literally leave you feeling exhausted. When you lose more fluids than you are taking in, you become dehydrated. With the holidays right around the corner, there’s more opportunity to eat foods that increase your opportunity for vomiting.

When you become dehydrated, try small sips of water, Gatorade or Pedialyte. You may be sweating, but feel cold and clammy. Your mouth feels sticky and you might even feel thirsty. Your head is pounding, but you’re unable to keep anything down, including something for your headache. Making a decision is difficult, due to confusion and a raging headache.

Dehydration can lead to several complications, including heatstroke, kidney stones or kidney failure, seizures (when your electrolytes get out of balance), or shock. Be aware that dehydration can happen quickly and lead to serious complications. When you are dehydrated, your bodies fluids need to be replenished quickly. If you’re unable to keep any liquids down, you should call your doctor or go to the emergency room. Your doctor or ER physician will immediately start an Intravenous Therapy (IV) to replenish your body with salts and fluids.

dehydration

Remember – things can deteriorate very quickly when you’re dehydrated. Know the signs of dehydration and seek medical help as needed.

Resources

https://www.webmd.com/a-to-z-guides/dehydration-adults#1

https://www.mayoclinic.org/diseases-conditions/dehydration/symptoms-causes/syc-20354086

https://idiotrunnergirl.wordpress.com/2015/06/16/its-a-food-thing-summer-heat-and-hydration/

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