Nursing school is hard enough as a healthy person

Brittany Kendall

I am 22 years old. I started nursing school in June of 2018. Nursing school is hard enough as a healthy person.

I got a kidney infection in the end of November of 2018 for which I was hospitalized for. That began a severe struggle with my health. I stopped being able to hold down any food (even water). After multiple hospitalizations, one of them lasting a month.

I was officially diagnosed with severe gastroparesis in April of 2019 after I had lost 60 pounds and my gall bladder removed. They couldn’t control my nausea and vomiting with any diet or medication, so I ended up with a surgically placed J tube. I have since been hospitalized 3 more times, not including the ER visits from passing out at clinicals in which I was not admitted.

I currently have not kept down anything I have ingested for about a year now, despite the gastric pacemaker I had placed in June. Despite the 4 surgeries I have had this year, the accumulated 2 months of the last year I have spent in a hospital bed because of this disease along with kidney stones and an ovarian cyst that burst, and the malnourishment that keeps me exhausted most of every day, I graduate nursing school in 38 days with a 3.9 GPA.

I also accepted a position on my dream unit (an ICU) for after I graduate. I am still learning to live with my feeding tube and still struggle to remain positive. I have my days where I cry and want nothing more than to be able to enjoy a glass of ice cold water and gain some weight. I still have hope that, one day, I will be able to get rid of my feeding tube and keep down something. I am so excited that I am going to graduate with my BSN despite my bad luck with my health. This has been easily the hardest thing I have ever done in my life. Thank you for letting me share.

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It has changed my life dramatically

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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Sensitive Stomach

Manny Zuckerman (Before getting so sick)
Manny Zuckerman (Now)

I have suffered from what my mom would call a “sensitive stomach” since I was born. Certain foods through childhood would just throw my body into a funk and I would feel absolutely so sick. I had horrible abdominal pain.

In 2015 I had my gallbladder removed and it seemed ever since then everything went down hill. First it was acid reflux, and IBS, and Dumping Syndrome. Which in time wreaked havoc on me and until 2017 I was able to manage a pretty normal life style, and then BAM….. It’s like my entire body was shutting down. I couldn’t eat anything, everything hurt, I couldn’t drink, I lost close to 110 lbs in a little under 8 months and became half the person I once knew.

First it was emergency hydration and electrolytes in the ER, which then became admissions, due to needing so much nutritional support, to the point they decided to put in a J-Tube. The first one 5/2018 put me in the hospital for 32 days , caused unbearable pain, a staph infection ended the tubes life before I ever even began to be able to use it. Subsequently the laparotomy caused adhesions, and a bowel obstruction leading to a second surgery in 10/2018 to repair bowel and lysis adhesions, and an attempt of a 2nd tube on the opposite side of my abdomen. Tube number two felt like a god send, I though it was finally gonna work. And it did . For 2 month until I developed a Pseudomonas infection which caused a massive obstruction leaving me in Mayo Clinic for 9 days on NG suction. At this point it was determined I needed TPN nutrition. I had been inpatient admitted 30 times at this point spent nearly 100 days in the hospital and my life felt completely over. TPN kept me sustained and hospital free for 5 months until May 2019 , when I was admitted for emergency ventral hernia surgery and for the next two following months I was in agony in and out of the hospital and unable to tolerate any activity.

Finally 7/2019 I went in for severe abdominal pain and was unable to take it any longer. My surgeon determined I had adhesions causing pain and needed to have surgery once again and she would resection my scarred bowel and lysis my adhesions. Post surgery I woke up to be told I had a condition called Intussusception which the bowel telescopes inside itself. It’s only found in 5% of humans and mostly infants. This was a massive breaking discovery to my diagnosis as we felt we have found the source of why I have been so ill for so long, My biggest challenge now will be the life long irreversible damage all of these abdominal surgeries have caused,

I am still TPN dependent and can eat some by mouth but Gastroparesis is still my # 1 challenge everyday and It’s just something I will learn to live with and adapt to whatever changes are needed to sustain a happy healthy life.

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Nausea 24/7

Kathy Gordon

Gastroparesis has been being nice to me the last week. Nausea is like always … 24/7. However it’s been mild. I’m holding around 120 lbs right now. I say all this because just a handful of years ago it was really kicking my rear. In December of 2012 I went from 135 lbs which was hard fought to gain back to after my original lose during diagnosis back in 2010. Anyway in a two week span I went from 135 to 82 lbs. My gi was recommending tubes to feed me and one to drain my stomach. I refused as I’m stubborn and didn’t want an operation (this was prior to having my gallbladder removed for my first surgery) and wanted to try to avoid one.

I fought hard daily to control my violent vomiting sessions. My severe nausea and pain we’re horrible. By 2016 I had managed to get up to 120 lbs finally. Then I had my gallbladder removed. My gp got pretty bad again till almost 2017 when I started a approximately year long remission. During which I went up to 178 lbs. In June of 2018 I started losing again and by December I had dropped back to 110 lbs. During that six months I did my best to care for the love of my life as she was losing her battle with metastatic breast cancer that had metastasized and spread through her body. After she passed I slipped into a bit of a depression and let my health go south. Due to my vomiting and non-existent appetite my potassium dropped to a 1.2. For those that don’t know potassium levels should be between 3.5 and 5 to be within normal range. I had no energy and barely left my bed. I ignored my chest pain, low BP, and the numbness in my limbs. I didn’t really care. My primary doctor and the love of many people I care about both known in person and known only from Facebook gave me a reason to get out of bed and get to the hospital and get my health going the other way.

Now here we are in August 2019. I’m alive and fighting the good fight on the bad days and doing as much as I can on good days. Everyday unless I’m to I’ll to be online I’m here in the gastroparesis support groups doing my best to support and love others that are fighting. There are many of us out there. We look like your brothers and sisters. Your sons and daughters, cousins, mothers, best friends, wife’s, and others. Some of us gain while others lose. Some like me experience rapid and drastic fluctuations. With periods of stasis where we can’t gain but also don’t lose.

We have lost many warriors to complications of this and or comorbid diseases. We’ve lost children as young as 3 and older adults. Our lost gp brothers and sisters vary in size, shape, color, age, and more. We remember them and mourn their loss.

Please if you read this and care for me at all do me the favor of sharing my story and other gatroparesis posts. Spread awareness and advocate for awareness by doing so.

If you have questions message me and I’ll do my best to answer them for you and help you understand. We are starving for a cure. We need help spreading awareness.

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As a LPN I was never taught about GP in Nursing School

Flora Santagata

Hello, My name is Flora, I’m 55 years old & was diagnosed almost three years ago with GP. I was an LPN & it was never taught in nursing school.

When I was diagnosed, I thought they were wrong & was in denial for over a year. But finally doing some research & joining the FB page for Gastroparesis, I had to face it that this is my life now. I dropped down to 100 lbs, & threw up constantly with bloating, pain, & constipation. No matter what I ate, drank or crushed up, it wouldn’t go away. I believe that I had gotten GP from several abdominal surgeries. After
having a total hysterectomy at the age of 21. I thought that was it, no more problems. But soon afterwards I started getting sick like morning sickness or the flu.

Then in 1994 I had a bi lateral mastectomy with reconstruction. Then I had my gallbladder taken out because it elongated because there was no
female organs to keep it in place. All the while, I just thought I caught the flu more than the average person. After a while my family said something is wrong, you can’t get the flu every 3 weeks.

I finally found a PCP who said I think you have GP. He sent me for the GES test, & I flunked it. I now know how to watch what I eat, I can’t eat over 4 0z. at a time & usually eat every other day. Once I put my full attention to this disease. I found a Gastro Dr. who treats people with GP. She suggested I try Domperidone 10 mg, 3 x a day. Since I have taken it my weight has gone up to 140lbs, I my flares are shorter & I’m not in the ED.

I also had gotten SIBO. that is when food sits too long in the intestinal track & you get an infection. 2 rounds of different anti’s & it was gone. Not forever, because I went 7 months without it & I think I over did it with the false sense of I’m healed & ate things I shouldn’t have had. So back on the anti’s. This is like round robin. I’m not sure how long I can stay on the Domperidone, but I know without it, I wouldn’t be here today. FDA needs to approve this drug in the States. I will fight for this until my last breath!

I’m fighting everyday to keep living. For me, there is no other option. This is my goal & to spread the word that this a digestive disease, not in my head. I don’t need a psychiatrist, I need for the healthcare profession to admit that this is a disease & they need to find a cure! Treating my symptoms will work for now, but how long will it work? We need a cure!

I’m a fighter & will continue to fight this battle. It may not be everyday, but I will not give up! I am a human being, not just a diagnosis. I want to be treated as a human. If your reading this, I will take it that you too have been diagnosed with GP or you are a Dr. who want’s to help me & my family of GP. Thank God I am a positive person or else I don’t know where I would be. I know one thing for sure, If you are told It’s in your head, or there is nothing they can do for you, then FIGHT! We all must be proactive in our own healthcare now. I know it’s like a full time job doing that, but it’s where I am right now. Thank you for taking the time to read my story, God bless, & let’s find a cure ASAP!

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