It’s been a long couple months with being hospitalized, in and out of the hospital for a week, multiple doctors appointments in between everything and surgery, trying to figure out my next 3 surgeries now as well I’m so mentally and physically overwhelmed with life currently. Imagine getting diagnosed with something so rare, that most doctors don't know how to treat you. Or something so rare you have few treatment options and none of them are ideal or may actually help you, they offer you in a word Band-Aids. Imagine..... Going to a doctor's appointment and being told your to complicated or that your doctor can't do much more to help you as you have already tried about everything or do to other health issues you can't try those other meds as they can cause QT which is a bad heart issue no one wants. This is a reality for many who suffer with Ehlers Danlos Syndrome, Pelvic Congestion Syndrome And Gastroparesis. Myself included. #starving4acure #raredisease #ehlersdanlossyndrome #pelviccongestionsyndrome #gastroparesis #crohnsdisease #neverstopfighting #justkeepswimming #chronicillness #chronicpain #nevergiveup💪 #staypostive #positiveoutlook
With severe Gastroparesis I have been experiencing not only GP symptoms but nearly all (about 99%) of the symptoms of CIPO and Colonic Inertia as well, complete with intestinal and bowel obstructions. Though doctors refuse anymore testing since my positive GES and the placement of my feeding tube.
With neurological issues I also choke on and aspirate food and have actually choked on AIR, which also easily gets trapped in my digestive tract.
Despite this, and the fact that I'm allergic to the only food my digestive tract can digest, I am forced to continue to eat and make myself sicker in order to "survive". I struggle every day with nutrition and weight. I hope some day I can get a doctor to listen to me and help because tube feeds alone are not enough for my body to sustain life and oral nutrition is not helping. .
This is my reality with digestive tract paralysis.
#digestivetractparalysis #dtpawarenessmonth #severeGP #intestinaldysmotility #jejunostomy #feedingtubelife #seemeGP #chronicovercomer #chronicallyhopeful #Zebrastrong #sickfightsback #warrior #notgivingup #starving4acure #tubiestrong
One year ago today was my jejunostomy surgery and it has been a long, hard year to say the least.
It was done as an emergency surgery. As I was being prepped one of the nurses noticed my breath was 'off' I had ketoacidosis. They started my feeds almost immediately after the placement and at 400 mls/hr (two things tubies know are not usually done).
The list of complications I have experienced just about runs the gamut from granulation tissue and clogged feeding tube, to my feeding tube falling out and stoma infections (one of which invaded my bloodstream). I do not tolerate oral nutrition or adult formulas and developed a sudden intolerance to protein so only tolerate EleCare jr at a slow rate. Essentially I am getting less nutrition than a baby through my feeding tube.
Its not an easy battle but I'd like to think this fight is worth it so here is to another year! 💖💪🙏
#chronicovercomer #chronicillnesswarrior #jesustakethewheel #Zebrastrong #tubielife #jejunostomytube #gastroparesiswarrior #dtpawarenessmonth #EhlersDanlosSyndrome #lupus #Dysautonomiastrong #Mastcelldisease #allergies #sickfightsback #starving4acure
I have had digestive issues my whole life, as a child it was mostly just pain and bloating, then as a Junior in high school I started experiencing intractable nausea. I had so many pregnancy tests done over the years and the initial thought was pregnancy and morning sickness... I was barely old enough to go on group dates at this point as I was barely 16 years old so I thought, just humor the doctors... Funny, because the only dates I went on in high school were chaperoned by the guys parents (lets just say I was in college before I got past a second date with any guy).
Due to GP I was bullied and abused, accused of not being able to take care of myself, accused of making myself sick. This isn't a choice. Its not something we seek after or willingly choose. I spent 7 years fighting for a diagnosis of Gastroparesis. My vagus nerve is damaged and gastric muscles weak. Doctors still can't decide what exactly caused it but it seems the cause is an unlucky combination of conditions. -EDS
Just to name a few of the contributing factors...
#digestivetractparalysisawareness #thisismystory #humorhelped #Gastroparesis #starving4acure #chronicillnesswarrior #lupus #EDS #Dysautonomia #Zebrastrong #feedingtubelife #chronicovercomer #chronicallyhopeful #ichooselife
This month is kind of a historical month for me. Its not only my birth month, its also the awareness month for #Gastroparesis (paralysis of the stomach) a condition that has had a significantly negative impact on my life.
I had my first gastric emptying study for my 23rd birthday 2 years ago. Then last August my diagnosis went from mild to severe and I received my J tube. August is also the month I had my first #Ketoacidosis episode (no diabetes) and the month #Mastcelldisease showed its face in my life.
I lost my gallbladder and my liver almost shut down on me due to GP. My intestines and colon are slowly shutting down.
Gastroparesis has caused not only Malnourishment and severe dehydration in my case but also lead to #Immunodeficiency and severe blood sugar fluctuations.
#gastroparesiswarrior #DTP #starving4acure #Zebrastrong #tubiestrong #jejunostomytube #chronicillnesswarrior #lupus #Dysautonomia #hEDS
We keep the light on for #Advocacy 24/7/365 not because we are motel 6, but because we have an #Incurable #Invisible #Chronic #ButYouDontLookSick uninvited passenger we do #GPReports as #Patient_Advocates with Campaigns 1) #Worldwide #TakeABite4GP 2) #USA #HR1187 #FGIMD #IBS #Warriors giving thanks daily for our blessings. We have priceless family, friends, & hope you see the positivity and optimism with each of our #PassATag & #buddycheck if you feel alone You are not #WeWillFindYou #WeWontStop #NEGU #cures #CureGP #Gastroparesis #Starving4ACure is a literal tag not drama. Our bodies do not receive enough nutrients and hydration. A failure to thrive situation occurs from stress over time from repetitive dehydration and chronic malnutrition on our heart, lungs, kidneys, brain creates stress on our organs over time. It cannot be overstated the importance of being hydrated!!! Always sipping on something. A lot of Motility #Warriors are not able to tolerate water and then there are some who can only tolerate water. I am in the carbonated diet drink. I keep a small drink by me at all times and do hydration fluids in an attempt at staying hydrated. Those who have chronic migraines know being dehydrated will increase your pain levels/aggravate your migraine. Help a fellow #Warrior #GPReport
#memorialdayweekend #Soulful #Sunday #seeing #Blessings #Miracles all around us in the smallest of of moments. Yet they are so very large.. I did not write this number oh no! I did not! I just looked down and there it was and if you are in my thoughts and prayers you are seeing and hearing the same thing. As I share my favorite number is 3 and it's multiples thereof.. so when I share hubby walks up and immediately catches 2 fish with the bow and then gets one more with a bright red bottom (German Carp) but it gets off right at his feet ,,, then he loads the arrow and tries again .. misses right in front of him.. soooo yes if you are in my head... listening.. 1,2,and 3 ... well then .. (🌬✨) enough said. #ForevermoreInOurHeartsAndMinds #HR1187 http://goo.gl/Nl82G7 #USA good knows no boundaries if /when passed our motility bill will benefit #Worldwide #gastroparesis #CureGP #FGIMD #IBS #Incurable to #Cures #Mito #Diabetes #QualityOfCare - #QOC to those #Starving4ACure #malnutrition #dehydration #fatigue #BrainFog = #GPFog = trying to communicate with cooked 🍝 noodles/no sauce. Nor meatballs we - our brains are the noodles.... in the midst of the #GPFog
@lowninstitute @melissaadamsvanhouten #RightCare #IIWK16 we move from @invisibleillnessawareness #GPNation @invisibledisabilities to the upcoming #RightCare w/ @lowninstitute & Ms Mellissa @melissaadamsvanhouten hosting in October the FB event to further give Awareness & provide an opportunity to be seen, heard with Dr's & medical teams at this very crucial time in sooo many lives. We are all at one point or another will have "our story of interaction w/ a #RightCare of interaction -- or a moment of complete opposite of #RightCare share this experience/s please! These moments are how change happens. I repeat my sincere invitation to #TakeABite4GP during #Halloween #thanksgiving #Christmas #hannukah all of the Holidays celebrated over the next several months. Encourage #Empathy in behalf of the ++ #5MillionGPStrong #Starving4ACure #Dying4ACure. Sending or not treating patients due to a lack of knowledge about their #IncurableIllness or #Inability to treat the complex nature of the multiple dx's thereby dismiss you from their care also in part bc you are a nightmare of paperwork. Then, "Coupe de Gras" " We know what you need - We know you are suffering, but if we (The doctor) go any further I will get written up and may lose my license. The doctor can no longer do what his/her Hippocratic oath of "do no harm" says in the realm of best practices for "Complex dx's" ... We do not fit the mold. The only cushion in this scenario is being able to afford your ill health & the energy to fight. Do you see the irony in this The ones who are trying desperately to find just a #Spoonful of energy to manage a shower - sometimes this is a once a week event taking a couple of hours with rest breaks. Please see us, doing the triathlons in front of you! Behind these sweet smiles, calm personas, because we know our second brains are in our tummy We are kindly asking you to be disgusted at the the scenario we are describing! We being #everyone to tell their story #RightCare #TakeABite4GP
PLEASE, take 30 Seconds and sign in support of the Bill #HR2311! https://buildquorum.com/act/Tell-Congress-to-Support-HR-2311!-_WC
We need your help! This bill would expand research, increase funding, and promote awareness and understanding of devastating functional gastrointestinal and motility disorders that greatly impact the lives of millions of sufferers.
Your signature will send a message to your legislators in YOUR state to support #HR2311. Help me and 5 Million other Americans have access to safe, meds that actually help and a cure. We NEED YOUR HELP! Thank you from the bottom of my stomach and I know 5 Million others will be as grateful as well. Support the cause to end GP! NO ONE should have to SUFFER like this.
#starving4acure #gastroparesisawareness #nauseaandgp #gp #dtp #HR2311 #paralyzedstomach #chronicfatigue #motilitydisorders #safetreatments 💚, Me
Half way through my 3rd day back to work. I'm looking forward to the weekend so I can vegetate and relax. On the upside, I don't feel like a fat heifer today like I have been. My TPN rate was lowered from 2100mLs to 1850mLs and that seems to have made a difference in...water retention(). I am wearing GREEN for GASTROPARESIS AWARENESS today because, not only is it Friday, but it is still August, GASTROPARESIS AWARENESS MONTH! #Gastroparesis #GastroparesisAwareness #GastroparesisAwarenessMonth #Starving4ACure #GoGreen4Gastroparesis
I'm half way through my second day at work and I do not feel good at all. It was hard for me to come this morning but I did. My dad said "The second day is always harder than the first". I almost cried. He just thinks I'm lazy or not pushing myself. My PICC practically didn't flush last night. It took A LOT of effort on my mom's part to get it to work, but never mind that. I'm a warrior. Or trying to be. #Gastroparesis #GastroparesisSucks #GastroparesisAwarenessMonth #Starving4ACure #PiccLinePretty
#GastroparesisAwarenessMonth Day 6
The most common treatment for Gastroparesis is prokinetic medication. These include Reglan (metaclopramide), Motilium (domperidone), and erythromycin. All of these medications have possible adverse effects, there is no perfectly safe gastroprokinetic medication. These medications are controversial, with the possibility of neurological and cardiac adverse events.
Gastroparesis patients are usually also on an antiemetic medication to treat the nausea and vomiting. These include Zofran (ondansetron), Phenergan (promethazine), and Compazine (prochlorperazine.) These medications are traditionally prescribed for chemotherapy induced nausea. Patients may also use non-pharmaceutical treatments to ease these symptoms, including herbal supplements, Ayurvedic preparations, acupuncture, essential oils, ginger and peppermint teas, medical marijuana and Sea Bands.
None of these remedies can cure Gastroparesis, but they can help ease the symptoms. These medications may become less effective over time. Also, adverse reactions may occur spontaneously even after years of successful drug therapy.
#Gastroparesis #gastroparesisawareness #starvingforacure #starving4acure #digestivetractparalysis #diabeticgastroparesis #idiopathicgastroparesis #spoonie #spoonielife #chronicilless #butyoudontlooksick #invisibleillness #ehlersdanlossyndrome #mitochondrialdisease #gastro