Day 9– TPN (total parenteral nutrition)

#‎GastroparesisAwarenessMonth‬ Day 9 ‪#‎TPN‬
When you can’t eat to maintain your ‪#‎nutrition‬ and ‪#‎feedingtubes‬ are not an option, total parenteral nutrition (TPN) is the next step.

TPN allows you to receive nutrition through your veins and into the bloodstream. A PICC line (peripherally inserted central catheter) or a port in the chest is required to have central venous access because the solution is very concentrated. There are many risks when considering TPN so it is very important to speak to your physician about what is best for your care.

I personally do not have experience with TPN but ‪#‎awareness‬ is key. If you find that information on TPN could be beneficial to you or to someone you know, please talk to your physician.

‪#‎CureGP‬‪#‎DTPAwareness‬‪#‎FeedingTubeAwareness‬

**For more information, please visit these websites**
http://www.mitoaction.org/…/june-mito-meeting-ins-and-outs-…
http://www.cpmc.org/learning/documents/nur-piccline-ws.html
http://www.medscape.com/viewarticle/508939
http://www.nlm.nih.gov/medlinepl…/druginfo/meds/a601166.html

 

Day 8 — Feeding Tubes

‪#‎GastroparesisAwarenessMonth‬ Day 8 is a glance at ‪#‎FeedingTubes‬. To be honest this post was hard to condense as each tube could use it’s own post, not to mention the different formulas and methods of feeding. This is a very condensed look at types of tubes that can be used for getting ‪#‎nutrition‬, medication and hydration when oral methods are no longer enough.

In my personal story, I fought as hard as I could to try and avoid a feeding tube. But it got to the point that I could no longer drink water without vomiting. I allowed doctors to place a ‪#‎NJtube‬ as a temporary solution while doctors figured out another plan to help with weight control and nutrition. This tube was inserted through the nostril, down the esophagus, past the stomach, and into the jejunum (the middle section of the small intestine.) I can honestly say this saved my life because without the tube feeds, I was literally‪#‎starving‬ to death. After 2 months of success with this tube, I had surgery to place a ‪#‎Jtube‬ through my abdominal wall and into the middle of the small intestine. I had this tube for about 4 months until I was able to eat foods orally again.

While tube feeds help those keep up the fight against ‪#‎Gastroparesis‬, it’s not a solution. It’s a band-aid until doctors can find a ‪#‎cure‬. If you find that information on tube feeds could be beneficial to you or to someone you know, please talk to your physician about the many options out there.

Also you can visit:
http://www.feedingtubeawareness.com/
http://www.medicalhomeportal.org/clinical-practice/medical-technology/feeding-tubes-and-gastrostomies

‪#‎CureGP‬ ‪#‎DTPAwareness‬ ‪#‎FeedingTubeAwareness‬

Day 7– Malnutrition

‪#‎GastroparesisAwarenessMonth‬ Day 7 is focusing on ‪#‎Malnutrition‬. Having‪#‎Gastroparesis‬ means that your ‪#‎diet‬ can fluctuate from “normal” to absolutely nothing in the blink of an eye. A flare up can cause you to live on liquids or nothing at all. When this happens you are missing out on those valuable nutrients that keeps your body going.

After a while your body goes into a panic mode. It’s harvesting ‪#‎energy‬ from anywhere it can get it. You start to lose fat, muscle & bone density. You become physically and mentally weaker. Eventually, you will be diagnosed as Malnourished and will need some sort of assistance.

At first, this broke me. I felt like my ‪#‎independence‬ was taken from me. But then I realized that these options are going to save my life. They are going to keep me from ‪#‎starving‬ until a better idea is presented. Medications, Feeding tubes, and TPN were the options presented to me to be able to get those nutrients I desperately needed. The medications interacted badly with others that I needed so I couldn’t rely on those. TPN had more risks than feeding tubes so I chose the tube route. My weight stabilized and I am thankful for this because I was losing 10 lbs a month. If it weren’t for the tubes I literally would have starved to death.

We need ‪#‎awareness‬, we need a ‪#‎cure‬. ‪#‎CureGP‬.

Day 6– Gastroparesis Bloating

#‎GastroparesisAwarenessMonth‬ Day 6 cpvers ‪#‎Bloating‬ & ‪#‎Distension‬. Many people experience the feeling of bloating after a large meal. It’s uncomfortable and it seems like your pants don’t fit after. Now with‪#‎Gastroparesis‬ this feeling can happen more frequently and on top of feeling bloated, your stomach can actually become distended! Depending on the severity of symptoms and what you may be able to eat can cause your stomach to distend a little or to the point a looking pregnant.

Personally, I have experienced distention to the point of looking 5 months pregnant. Now this may seem odd for not having an actual baby inside of me but with the build up of undigested food, toxins, gas and air; it caused me to distend. I experienced pain, trouble breathing, and severe cramping. Along with all these symptoms my clothes didn’t fit right either. Dealing with a disease that has no cure can be mentally draining. Adding the ‪#‎discomfort‬ of trying to explain why you look pregnant when you’re actually just sick can make you ‪#‎selfconscious‬ and take on a whole new level of mental draining.

There’s no one way to fix the distension & bloating. There is simply trial and error once a doctor is willing to take on your case. For a‪#‎disease‬ that affects 1 in 25 ‪#‎Americans‬, there isn’t much that can be done. We need‪#‎awareness‬, we need a cure. ‪#‎CureGP‬.

 

Day 5– Explaining the Spoon Theory

Day 5 of ‪#‎GastroparesisAwarenessMonth‬! A ‪#‎Spoonie‬ is a nickname for a person living with ‪#‎chronicillness‬, that identifies with Christine Miserandino’s ‪#‎SpoonTheory‬. Her full story can be found athttp://www.butyoudontlooksick.com/category/the-spoon-theory/.

The reader’s digest version is a person living with a chronic illness; hypothetically measuring personal daily activities and comparing with the proper amount of spoons needed for an event or occasion… sometimes you have an abundance, other times you come up short. Her theory is a way to physically describe how someone is getting through day by day to someone who may not understand completely.

‪#‎Gastroparesis‬ takes away time, friends, family, work, school, food and more. The spoon theory shows that someone with this‪#‎invisibleillness ‬isn’t being selfish when they cancel plans, they simply used their spoons to go to work, or take care of their family. You don’t really know what ‪#‎fatigue is until you NEED to rest after taking a shower.

Since there is no ‪#‎cure‬ for Gastroparesis, we are told that we need to learn to manage our symptoms. That sounds easy enough but there is no standard testing to diagnose our symptoms. There is no standardized plan of action. There is simply trial and error once we find a doctor willing to take on our case. For a ‪#‎disease‬ that affects 1 in 25 ‪#‎Americans‬, there isn’t much that can be done. We need‪#‎awareness‬, we need a cure.‪#‎CureGP‬.

Day 2 — Nausea & Vomiting

Two of the biggest symptoms of Gastroparesis are nausea and vomiting. These two symptoms can be debilitating to a person and make it unbearable to complete otherwise simple tasks.

For me, Gastroparesis had forced me to have this feeling every day. Sometimes lasting for just a little while but other times all day… sometimes for days at a time. A majority of the time food is the source. There’s some days though where I won’t eat anything at all and I still feel like I’m going to vomit at any given moment.

It’s hard to function when you don’t feel like yourself, let alone if you feel like you’ve been spinning all day long. In the image below, I have included an imagery Exercise to allow those who don’t have Gastroparesis to take a Glimpse into our world. To close your eyes and force yourself to walk a day/week in our shoes.

Remember to spread the word about Gastroparesis. You could be saving a life by acknowledging someone’s symptoms. #GastroparesisAwarenessMonth

Gastroparesis Awareness Month 2016

It’s day 1 of ‪#‎GastroparesisAwarenessMonth‬! Starting today and through the next 30 days, I will be posting daily with information to help spread ‪#‎awareness‬. My intention is to educate others on the ins and outs of this troubling disease and hopefully give some people a little peace of mind when they find out they aren’t alone in this fight. Together we can spread the word, help others, and find a cure for‪#‎Gastroparesis‬. Help spread awareness by sharing with everyone you know. Someone may be suffering symptoms and not even know how to approach their situation.

The biggest thing to know about Gastroparesis is that it’s different for everyone. Symptoms and intensity of the symptoms vary and it is extremely difficult to diagnose. I dealt with my symptoms for 7 months before I found a doctor that could diagnose me correctly. I spent an additional 5 months suffering through symptoms, different medications, and side effects before I had a pacemaker placed. Then 2 more months until I was able to tolerate some foods again. After all of that I still went through several months of doctor visits to adjust the settings on my pacemaker until we found the setting that allows me to function “normally.” I still have good days and bad ones but without that doctor’s help I would be under 100 lbs and slowly ‪#‎starving‬ to death. It sounds dramatic– but that’s because this #invisibleillness‎ can become extreme if not correctly diagnosed and managed. Help spread the word. Thanks! ‪#CureGP

Day 20 of Gastroparesis Awareness Month — Warriors

‪#‎GastroparesisAwarenessMonth‬ Day 20:‪#‎Warriors‬

Anyone fighting an ‪#‎invisibleillness‬ or a ‪#‎chronicillness‬ is a ‪#‎warrior‬, They are ‪#‎fighting‬ a battle and refuse to give up. Even though they can get knocked down, a warrior will fight to get back up. The disease cannot and will not win.

Pictured, are just a few warriors. There are literally millions in ‪#‎America ‬‪#‎starving‬ for a cure. 1 in 25 Americans are affected by ‪#‎Gastroparesis‬. That’s 4% of the population.

‪#‎Fight‬ alongside us. ‪#‎SpreadTheWord‬. Spread ‪#‎Awareness‬. ‪#‎CureGP‬.

Day 13 of Gastroparesis Awareness Month — Making a Difference

‪#‎GastroparesisAwarenessMonth‬ Day 13: ‪#‎MakingADifference‬

Throughout the past 2 weeks I’ve been posting to educate others on this ‪#‎InvisibleIllness‬ called ‪#‎Gastroparesis‬. Some have asked me what they can do and I say ‪#‎SpreadTheWord‬. The other thing that everyone can do is help us spread the word in ‪#‎Congress‬.

Gastroparesis is ‪#‎debilitating‬ and can literally ‪#‎starve‬ us to death. There is no ‪#‎cure‬ and no way to treat the cause because many don’t know how they acquired the ‪#‎disease‬ in the first place. There are only temporary band-aids to help treat ‪#‎symptoms‬. You would think that if a disease doesn’t allow someone to work or even just live normally day to day that the person would qualify for ‪#‎disability‬. But the fact is, Gastroparesis is NOT considered a disability and many who file for the assistance get denied.

We need to take a ‪#‎stand‬ and force our congressmen and government officials to ‪#‎listen‬ to us and see that something is done to make this happen. Please ‪#‎sign‬ and make your voice heard!
http://www.petition2congress.com/…/petition-recognizing-…/ng

Also, just because we post that it is Gastroparesis Awareness Month– it doesn’t mean it is nationwide…yet. Many states have approved‪ #‎proclamations‬ for a week or month but not all have done so. This proclamation asks that #Congress officially proclaim August as Gastroparesis Awareness Month in the United States.
http://www.petition2congress.com/…/proclamation-to-establi…/

Lastly, there is a ‪#‎Bill‬ in the ‪#‎HouseOfRepresentatives‬ right now asking: “to expand the research activities of the National Institutes of Health with respect to functional gastrointestinal and motility disorders, and for other purposes.” This bill is known as ‪#‎HR2311‬ – Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

As of right now there are 3 cosponsors of the bill– Rep. James F. Sensenbrenner, Jr. [R-WI-5], Rep. Andre Carson [D-IN-7], and Rep. Zoe Lofgren [D-CA-19]. For more information on this Bill, please visit: https://www.congress.gov/bill/114th-congress/house-bill/2311

We need a cure and we need ‪#‎awareness‬. We need a ‪#‎method‬ to figure out a diagnosis before we starve to death looking for answers.

‪#‎DTPAwareness‬ ‪#‎ChronicIllness‬