Year: 2019

Life is hard enough

Posted on by Gastroparesis: Fighting For Change

I suffer from gastrointestinal problems and have recently been diagnosed with gastroparesis but after only trying medications that did not work the idea was changed. Based on what sounded like very little knowledge. I am home and struggling because there isn’t enough research out there to help diagnose these things let alone treat and maybe cure. I have suffered since I was a child with the same problems, now age makes it difficult to handle. I have a daughter who just turned 12 years old. I have a life to return to. I’d rather be worrying about my daughter than fighting and getting frustrated and depressed because I am afraid I may pass before she turns 18. I cannot afford a life change life is hard enough without the uncertainty of life.. please raise more awareness, look more into it. Spread all these stories. I’m broken from having to watch my daughter shed tears every time I return from the hospital as if she’s expecting me not to return one day. She’s scared and she’s young. Please.

Submitted by:  Zujeily Sanchez

 

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Although I’m overweight, I eat less than a child eats

Posted on by Gastroparesis: Fighting For Change

Since I was a child I’ve had issues with my stomach and bowels.  But in 2012 I was given a diagnosis of gastroparesis. Two years after that I was diagnosed with pre-diabetes. When my stomach is in a fit, my blood sugar goes way up, when it’s having a good day my numbers come down. I’m supposed to only consume liquids or purees for my meals. My stomach doctor said just put your steak, potato and broccoli in a blender. I’m sure there is a way to make that taste okay, but no thanks.

Over the years my stomach has gone into “remission” and I could eat what I wanted and be okay. But that doesn’t seem to be the case anymore.  Although I’m overweight, I eat less than a child eats. Everything I consume at this time just makes my stomach hurt, I get severely bloated, I look pregnant, and I’m miserable. I can’t eat fresh veggies or fruits, they have to be canned or cooked to mushy status. No peels either. I can’t eat red meat, even ground anymore. If I eat like a normal person, I feel like my stomach is going to explode. Yet I’m over weight and not quite malnourished enough for a feeding tube, yet.

I eat empty calories, so sugar, fats, things you shouldn’t eat, but anything else just makes me sick. I’m fortunate that I don’t throw up, yet. But the nausea, the bloating, the pain makes me not want to eat anymore. So then I’m labelled with an eating disorder. I have no energy, I hate going out to eat with family or to their house because I’m so limited on what I can and can’t eat.

There are many people that are far worse than I am, so I’m grateful that I only deal with these issues. But I’m tired of my GP being associated with diabetes. I had GP for 2 years before my A1c showed high. I think there needs to be more education in the medical field so that they have a better understanding of this disease. If our only treatment options are a drug that is really harmful to people, so much that the FDA won’t approve it, then we need change. I would like establishments to be more understanding when someone like me wants to order from the kids menu as to not waste food, can order from the kids menu without getting told that they can’t do that. I want there to be more awareness.

Submitted by:  Heather Cooper

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It has changed my life dramatically

Posted on by Gastroparesis: Fighting For Change
I’ve had gastroparesis since 2010. It’s changed my life dramatically. Surgery to remove my gallbladder because my stomach wouldn’t move food. It just sat there. Tons of nausea, weight loss, abdominal pain…daily. I had to change how I eat food to more liquids, smaller meals, which wouldn’t have been as big of a deal by itself but because of comorbidities is highly challenging to nigh impossible. My diet is already limited due to Crohn’s disease and lack of a colon. The only FDA approved medication that worked for me was Reglan and that has a black box warning for tardive dyskinesia, which is unstoppable shaking for the rest of your life. I took reglan for 7 years due to no other options. If I didn’t take it I’d be so nauseated I couldn’t eat and my stomach would take days to empty one meal. My doctors didn’t think reglan worth the risk. I now take a medication from the UK called domperidone that I have to order online because it’s not FDA approved. It works better than nothing. In a country where there are multiple drugs for the same health concern, why is it that there is nothing in America I can take. Why were there only 2-3 options and none worth the risk due to potential and actual side effects? I implore you to push forward with research. Many people suffer idiopathic gastroparesis. It’s not our fault that we have it and there is no cure. Once the vagus nerve stops communicating that’s it. EDS, Lyme Disease, GI disorders have correlation with gastroparesis. As I learned in graduate school, correlation does not equal causation. Please find a cause. Please find a cure.

Submitted by:  Dr. Sarah Cooper
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When I was first diagnosed I was hopeful

Posted on by Gastroparesis: Fighting For Change
Christine Savoy-Johnson

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.

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Fighting for my life while being treated like a guinea pig

Posted on 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

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