Gastroparesis: Fighting For Change > Articles by: Gastroparesis: Fighting For Change

Author: Gastroparesis: Fighting For Change

We created this website to provide the public with additional information regarding Gastroparesis. It is our goal to connect users with our Facebook advocacy group, “Gastroparesis: Fighting for Change.” Our Gastroparesis: Fighting for Change Facebook group was formed to unite people with Gastroparesis and other digestive and motility disorders to work for change. It is not a typical GP support group, as we do not discuss personal medical issues. Rather, we established this as a place where members can discuss ideas regarding our mission, vision, goals, needs, services, and resources to work toward solutions. So if you want to make a difference for our GP community, we encourage you to share your ideas! Additionally, we need you to help us fight for changes in legislation! Also, you can help raise funds! Finally, you can help spread awareness! Please join our main group. We would love to have you! You can find links to our Community Page and our Advocacy Group on our Resources Tab. In order to accomplish our goals, we will be sharing many ways you can get involved on our Campaigns Tab.

When I was first diagnosed I was hopeful

Posted on August 29, 2019September 9, 2019 by Gastroparesis: Fighting For Change

I have this thing, it’s called gastroparesis. When I was first diagnosed I was hopeful. I set my sights on the road to my inevitable recovery; because “I am only 30ish, it’s not like I’m going to die or anything ! No, I am going to beat this, nay not I, we were going to beat it. You see 8 years ago when I was diagnosed, I had a tribe. Aaahhh yes, my tribe headed up by the linked arms and the strong footfalls of my parents, my husband, my ex husband and my children.

Unfortunately what no one tells you is this illness doesn’t just affect you only physiologically, but it shakes the very foundation upon which, if you like me, you thought was indestructible. No, this illness takes away your ability to go out to dance at the club or bar……because, well, no energy. It takes away your ability to take ridiculously named, but awesome looking and tasting shots……because, ugh, too nauseous. You have to cancel plans at the last minute… ..well, I’m just in too much pain.

So as I wigggled out of my old super social life into my new less than one; I noticed something, I was suddenly able to feel the wind at my back more freely, I whipped my head around to query my tribe. It was then that I realized several people had fallen away; not just for a pit stop to grab a water and return or sit briefly upon a rock to catch their breath, no they had fallen away and not returned. I blamed myself. Well if you hadn’t missed that birthday party or our the big labor day shindig, then so in so and you know who would still be here. You see this illness tries its best to wrap itself around your body and your life and squeeze every part of your status quo into hospitals, pills, countless Doctors, surgeons, specialists, and diagnostic testing. This illness shows you how humans truly behave, especially the ones in your tribe.

Fighting for my life while being treated like a guinea pig

Posted on August 28, 2019September 9, 2019 by Gastroparesis: Fighting For Change

I am a 41 year old wife and mother of 3. I was diagnosed with Gastroparesis 6 years ago. I have had 27 surgeries due to my illness. I have been on Social Security Disability for 4 years. I was tube fed for 3 years and have recently just had to have an NJ tube inserted . I am fighting for my life while being treated like a guinea pig and yet there is no hope around this disease. While I was tube fed I had to have 15 surgeries to either change feeding tubes or because of complications from the tubes themselves. I honestly felt like the feeding tubes were going to kill me faster than my actual disease. I made the choice to have my feeding tubes removed. Now social security is saying I am basically cured because I made the choice to have the tubes removed. I am on the verge of loosing my disability benefits and my medicare because of this and yet I just had to have a NJ tube inserted because I was unable to maintain weight and nutrition after my last surgery in May which replaced my 3rd Gastric pacemaker. I cannot work and I am now tube fed again. Life is traumatic and hard. I now have a home health nurse and dietitian along with 6 other specialists and yet I am nowhere near cured or healthy. Depression has overwhelmed my mind and body as I have tried to navigate through this disease with what seems like no help or support from my doctors or the government. Please help me!

Submitted by: Tyanna Sanders

Support H.R. 3396

Posted on August 27, 2019January 30, 2020 by Gastroparesis: Fighting For Change

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Posted on August 27, 2019August 28, 2019 by Gastroparesis: Fighting For Change

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Gastroparesis Awareness Month 2019 – Symptoms and Management Survey

Posted on August 22, 2019August 22, 2019 by Gastroparesis: Fighting For Change

We wanted to share the results of the second survey Trisha Bundy conducted on behalf of our online #Gastroparesis community.

The survey consisted of 8 questions and was shared publicly on Facebook and Twitter as well as in our closed Gastroparesis Support Group and in our Gastroparesis: Fighting for Change advocacy groups. We had 534 total respondents.

Note that nearly 95% of respondents indicated they experience abdominal pain always, usually, or sometimes. Only 5% rarely or never experience pain. In addition, nearly 95% always, usually, or sometimes experience bloating/distention; about 91% always, usually, or sometimes experience nausea; and nearly 72% always, usually, or sometimes experience vomiting.

Beyond these options, fatigue was the most common symptom listed (nearly 95% of respondents), followed by dehydration (nearly 76%); malnutrition (just over 71%), and headaches or migraines (just over 67%).

When asked where they find beneficial information (multiple selections permitted), an overwhelming number of respondents (nearly 90%) cited Facebook. This is to be expected, as the survey was conducted largely on Facebook, of course. Online research was the next highest mentioned source (just over 73%). Again, since this was an online survey, that is to be expected. There was a major drop-off after these sources, with nonprofits being cited by slightly more than 44% of respondents. Doctors and nurses came in at an underwhelming (nearly) 36%. [Makes one wonder why this figure is not up there with the Facebook and online research numbers. Perhaps we might collect essays regarding this in future surveys.]

Slightly more than 47% of respondents indicated they felt their GI is doing the best she/he can to help, while only 15% noted their GI does not listen/dismisses their concerns. Nearly 6% indicated that, by choice, they do not see a GI. [Again, it might benefit us to dig deeper into these issues in future surveys.]

Finally, slightly more than 41% of respondents indicated they had not undergone surgeries — though it is not clear what portion of those respondents were offered procedures but declined or were not offered procedures they would have liked to have undergone. (These are common complaints we see in the groups.) Just over 32% had their gallbladders removed, though it is not clear if this surgery was pre or post-diagnosis. Nearly 33% of respondents have had or now have tubes or TPN as a source of nutrition.

We value and thank you for your participation in these surveys! We are new to this and are learning as we go, but we hope the results (while not quite scientific) are useful. We would love to hear your ideas for future surveys.

Thank you all so much!

#RealGP #CureGP