Day 10– Everybody poops (Some more than others)

‪#‎GastroparesisAwarenessMonth‬ Day 10 talks about ‪#‎poop‬. Yup, I said it, Poop.

I’m not sure why there’s this stigma about having to keep quiet about something that EVERYONE DOES. I know I was uncomfortable at first when I started having issues. Not just because my stomach hurt more than words can describe, but because that’s just it… I didn’t know the words to describe it since I never talked about poop before!

With ‪#‎Gastroparesis‬, since your stomach isn’t working properly, the rest of your digestive tract is having a panic attack. One doctor explained this to me in a way I could actually “see” it. He said that my digestive system is an orchestra. When well rehearsed, it sounds beautiful and everything flows from beginning to end. But if someone doesn’t know the music anymore, you might hear them louder than everyone else because it isn’t right or you might hear something missing because they’ve stopped playing. Either way the orchestra is no longer in sync and it will throw off the whole performance.

People with Gastroparesis can experience a mixture of ‪#‎constipation‬ and loose bowels. The‪#‎cramping‬ “crescendos” or seems to get louder and the pain increases then starts to decline before it builds up again.

I encourage those that experience issues with ‪#‎bowelmovements‬ to stop being embarrassed about the topic and actually talk to your physician about your symptoms. It could be something more than just a stomach bug.

We need ‪#‎awareness‬, we need a ‪#‎Cure‬. ‪#‎CureGP‬ ‪#‎DTPAwareness‬‪#‎InvisibleIllness‬ ‪#‎DigestiveDisorders‬ ‪#‎EveryonePoops‬

Poop

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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

 

9 TPN

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

8 Tube Feeds

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.

7 Malnutrition

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.

6 Bloating & Distension

 

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.

5 Spoon Theory

Day 4 — Roller-coaster of a flare

Day 4 of ‪#‎GastroparesisAwarenessMonth‬! Once you find a management plan that works for you, a lot of symptoms can subside or at least can allow you to become more functional in society. But even if you do the exact same thing everyday, there are other factors that can provoke a‪ #‎FlareUp‬ of your ‪#‎Gastroparesis‬ symptoms. Since there is no ‪#‎cure‬ we are still working with band aid solutions. The symptoms are very‪#‎debilitating‬ and can hinder your normal activities. What you could normally do with ease can actually take every ounce of energy during a flare-up.

It’s very frustrating not being able to get off the rollercoaster and it’s awful living in fear, always second guessing every move you make. But you eventually learn to reserve your energy for what’s important because you know not everything can be accomplished on the low energy you run off of. 

We need to ‪#‎CureGP‬ and spread ‪#‎awareness‬.
Help spread the word. Thanks!