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

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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My GP Flare Face

Beth Davis
Beth Davis

I’m Beth, I live in Shelby NC 28150. I’m 58; been on disability due to fibromyalgia since 2007(I’m an RN). Since 2008, have had episodes lasting months/years of nausea, vomiting, pain, bloating; during one of those I lost 80lbs. 

I was diagnosed with gastroparesis in January of 2018. Due to flares this year, my quality of life has been severely affected. At times, sips of Sprite and IV fluids is my total intake. It’s exhausting and depressing. I get scared, because doctors and specialists admit, they don’t know much and cannot do much to help. 

This is my GP Flare Face; I was in the hospital. Much better right now. I’m thankful for every hour of non-flare!

Also below, my baby Matilda, 2 years old. She keeps me going. I have little family support, but I have her!

Matilda

I also have fibromyalgia, diabetes, high blood pressure, migraines, IBS, and angina. I’m a disabled nurse.

We all need and deserve better!

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No Compassion

Sandra Hearn

I am complicated. I have Lupus, Chiari 1 Malformation, severe Gastroparesis, POTs, Hoshimotos, and a really bad spine with five tarlov cysts at S1-2. Throughout the past couple of years having been brushed off with Chiari in 2010 by a neurologist and finally figuring out in 2015 what was wrong the damage was done. I had brain surgery in April 2016. Vagus nerve damage and a brain bleed as well. I have the best neurosurgeon in the world. one of the only doctors that truly does have compassion. I have been in and out of hospitals like the majority of you. The lack of compassion is mind blowing.

I am almost 54 years old. Two days ago I went for a lumbar puncture. I got a call from a nurse and she was as sweet as she could be. She walked me through what would take place. The problem wasn’t the nurses. The problem was the doctor. He didn’t care I had a feeding tube. I had to miraculously find a way to lay on my stomach.

Just last week I went through two tube changes. One where they cut the stoma to fit a larger tube because they refused to order my tube that I had. So I had a tender belly already. I had to prop my 83 pound self up using my weak arms and legs during the procedure. Then the impatient doctor didn’t wait for the numbing meds to take affect. He proceeded even after I told him I was in pain multiple times. Seriously? I shook in pain. I cried in silence. More trauma totally unnecessary because one man chose not to have compassion.

This is just one story. I have too many stories. I could fill a book. Our hospitals lack compassion. Sadly it is becoming the norm.

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Carolyn Sue McBane’s Story

My story is a little different than most. I do not have diabetes. In 2000,  I weighed 310 pounds and had gastric bypass surgery, then gall bladder, then colostomy a year later, but thank goodness it was able to be reversed. I did okay for about 5 years and lost 75 pounds but started having abdominal pain. I had every GI test known to man. It was my young internal medical doctor, Shannon Kennedy, MD, who ordered a GES and finally diagnosed me with GP. In the meantime, a huge hernia was discovered, and I had major surgery.

I believe with the last surgery, nerves were severed, so my muscles couldn’t work food out of my stomach!! I am sick every day, dehydrated, pain, nausea and now have to puree food or eat baby food. Next week I see a surgeon about a feeding tube. GP has robbed me of family, friends and self-worth!! I’ve tried 3 meds with no success. There is no cure, only treat symptoms! I do have my dignity. I try to help others with the same disease. I just became a South Carolina Gastroparesis: Fighting for Change coordinator. I’m fighting for a cure in the ways I can, and I will not give up. If I can stay sober 24 years, with God’s help, I can handle almost anything. God bless those who suffer from GP.  What a ride!!

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Lakshmi Faith’s Story

Hello, my name is Lakshmi, and I’m a 31-year-old female.  I started to get sick at the age of 14 years old.  I’ve been suffering over 17 years now with severe abdominal pain; nausea; vomiting; diarrhea; endometriosis, which causes me to bleed heavily, makes me very dizzy, and causes severe migraines that last from 1-2 weeks straight every month; and anemia.  I came into the emergency room on Friday, March 20, 2015, and am currently admitted for dehydration and pain.

I’ve been hospitalized more than 480 days in the last 17 years.  It’s a daily struggle living with gastroparesis; I’m usually admitted 2-3 times a month for it.  I’ve lost most of my veins already.  My IV lines are usually in my neck, fingers, palms, groin, legs, feet, and toes.  I’ve had ports and PICC lines.  I usually get stuck 10-15 times before they find a good line.

Gastroparesis has caused other health issues as well.  I’ve developed over $12000 worth of dental problems that insurance does not cover.  I’ve spent many birthdays and holidays in the hospital.  It’s a living nightmare, and I wouldn’t wish it on my worst enemy.

Imagine starving to death but not being able to eat, not being able to sit or stand up straight.  Your daily goal to achieve is to be able to eat and drink a little, making sure it stays down, and to be able to stand up long enough to take a shower.

I can go on and on and write a book or two on the daily struggles of living with gastroparesis.  I am one of the 5 million Americans who are suffering from this nasty, cruel disease, and I’m asking you all to please help spread awareness of this deadly disease so that more research can be done and we can have the opportunity to eat every day like everyone else.  Please help!  I’ve already lost one of my good friends, Ashley Gillmore, to this disease (last July) as well as a few members of my Facebook support group.  Recently, we lost a young, handsome toddler boy.  Too many of us are suffering and dying every day.  We desperately need help, so please, I am begging you all to help spread awareness of gastroparesis.  Thank you!

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