Tag: Pain

I had a Nissen Fundoplication

Posted on by Gastroparesis: Fighting For Change
Hope Davis

Once upon a time, I was a successful model, dancer, cheerleader, beauty queen, actress and writer. After endless rehearsals and performances without rest, I developed a hiatal hernia. I was offered an operation that was to get me dancing again in 14 days time, I was to never dance professionally ever again.

To fix my hiatal hernia, I had a Nissen Fundoplication in 2004 that unfortunately was unsuccessful and damaged my Vagus Nerve. After a long fight battling for my life, my body started to collapse until I was under 5 stones in weight (5′ 10″ tall) and I was given 6 days to live. I gave up and left the UK for the USA to say goodbye to my brother who lives there as I was expected to die and to be frank, I wanted to die! Not long after I landed I was hospitalized in the USA and luckily for me, I was diagnosed with Gastroparesis and finally got the life-saving treatment that I needed.

However, once back in the UK, the medications that were prescribed to me did not exist in the UK. My health dwindled yet again as I lay dying. After 2 years hospitalized in many hospitals seeking help, we finally came up with a management plan and I had to rebuild my body from scratch and face my new reality living with Gastroparesis.

I have flares all the time, on average, when at it’s worst or life-threatening, I am hospitalized about once every 2 years. When in a flare (which for me is extreme pain and/or vomiting), I like to hug and squeeze my teddy for comfort, get into the fetal position and play very loud music as I ride it out. Some days are better than others. I take many medications daily to stay alive. My life is now part-time living and part-time suffering but with the help of friends and loved ones and the Gastroparesis support groups, we battle on. We are not victims, we are survivors and we fight our Gastroparesis battle like gladiators!

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He is no longer able to attend traditional school and spends most days in pain.

Posted on by Gastroparesis: Fighting For Change
Serena Ayscue family

For the last 6 years my son has suffered terribly with gastroparesis. He began with it at 6 years old and is now 12. He is no longer able to attend traditional school and spends most days in pain. Because of the lack of funding, there are very few medications that can be used and there is even less research that has been done to help children. They are basically told to just suffer. It is absolutely the worse thing in the world to be told there is not much that can be done for your child. I look at cancer funding for children and I wonder why my child does not matter as much as those children. All children matter. I understand budgets, I understand the number of people with the disease, I get it…but until someone like you stands up for someone like us…my child will continue to suffer. We understand that a vote won’t even necessarily help our son, but if we can be brave, and stand together then we can at least say, that today’s suffering was not in vain, because tomorrow will be a better day for those that come behind us. Please join me in standing strong and please co-sponsor HR 3396. There are a lot of things we can stand for. I would be honored if you would stand with me and say that you want the suffering of children and adults with gastroparesis to end. Thank you for your consideration. I greatly appreciate your time and any thought that is given to this. I decided to share a picture of our family when things are good. We try to focus on those days. My son is the youngest one and he is tough as nails with the wisdom of a man much older. Thanks again for your time.

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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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My GP Flare Face

Posted on by Gastroparesis: Fighting For Change
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

Posted on by Gastroparesis: Fighting For Change

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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