IT’S OKAY NOT TO BE OKAY

In this guest post by writer and runner Samantha H Smith, we hear about loss – sadly, an ongoing problem in the gastroparesis community. Samantha has dealt with plenty of it, but she finds strength somehow.

“It’s Okay Not To Be Okay” – by Samantha Smith 05/15/17

I’ve been sitting here trying to write about loss for a few days now. Some days, my mind just doesn’t want to form words, or even try to comprehend all the emotions I’m feeling.

Recently, the GP community lost a sister; a brave and beautiful soul who meant the world to many people. I myself considered her a good friend; someone I was truly lucky enough to know and love. She was the kind of person who no matter what she had going on, she made time for you.

When I was at my sickest, and TPN became a reality, Dalia was right there, offering hope, advice and comfort. I’d always considered her a friend, but it was during that time that we grew close.

Everyone will experience loss at one time or another. Someone in your life may die. You may lose a job, a friendship, or a significant other. Loss is difficult, but loss is normal. I want you to know, it’s OKAY to not be okay. It’s okay to have bad days. Some days, the pain will be less, and you may be fine. Some days, the pain may be so overwhelming you can’t get out of bed. I’ve learned to be okay with myself during both days.

Just remember, it won’t last forever. Things will get better. You WILL be okay.

 


Samantha is 27, from upstate NY. She lives with a few chronic illnesses, one being Gastroparesis. She has a Bachelors degree in forensic psychology that she hopes to have a career in someday. Writing and running are both passions of hers. You can find more of her writing at her blog https://hustleandheart2016.wordpress.com/ .

Image credit: www.snappygoat.com

 

Skateboarding my way to health

By Rita Griffin

Skateboarding My Way to Health: Johnathan’s Journey with GP

 

Barbados, a Caribbean paradise that invites travelers to its magnificent beaches, is home to a courageous thirteen year-old boy, who is battling gastroparesis. His story is an inspirational and uplifting one, of how a young person can face difficult challenges with grace and determination.

Gastroparesis, a rare under-served disease often associated with young women, has no respect of persons. According to digestivedistress.com, “The National Institute of Health in the United States has declared that 5 million Americans are afflicted.” Of this staggering number one-third are idiopathic, meaning that there is no clearly identifiable cause for the illness. Even though the majority of sufferers are female, many males are being diagnosed from young to old.

Johnathan began his journey with GP in 2014 when he was only ten years old. He started experiencing constant vomiting and nausea. He was taken to five doctors in Barbados, but they could not figure out what was wrong. Johnathan stated, “One doctor thought it was constipation and gave me a laxative, luckily my family stopped giving it to me and took me to another doctor.”

He also suffered with acid reflux, and this added to the distress of vomiting and nausea. So, his parents brought him to the United States to the Arnold Palmer Hospital, where numerous tests were done. Johnathan explains, “After a 24 hour motility test at the hospital, the specialist indicated that the antrum of my stomach had flat lined, and that I had no activity. It was severe gastroparesis and no medicine had an effect on me.”

Despite hearing such devastating news, Johnathan’s parents helped him learn how to cope with his sickness. They were his mental support with care and understanding. Besides, he was only ten years old when he started getting sick, and his future had not been mapped out.  When he heard this devastating news, Johnathan was just a young boy who wanted to skateboard and go to school.

He was in the top of his class. Due to his challenges with GP, he missed two years of school. Yet, he never gave up! He was determined to achieve and to live, a determination which is crucial to overcoming any obstacle in life, especially a debilitating illness.

He was formally diagnosed in February 2014. Though he knew the cause of his vomiting and nausea, he got progressively worse. He was taking Reglan and it worked for only three months. He started vomiting again with bad stomach pains, causing him to lose weight. “I spent a month in hospital in October 2014 and they put a GJ tube in me to feed, as nothing would stay down and I only weighed 54 pounds.”

map-of-intestines

A GJ tube or Gastro-Jejunal is often used in severe GP patients. It is placed in the stomach and attached to the jejunal portion of the small intestine. From November 2014 to last September (2015), Johnathan could not eat, and was fed through the GJ tube for 18 hours a day. Courageously, he says, “ I got accustomed to walking with my milk either in a bag or walked around pulling my IV feeding pole.” Johnathan did not allow his circumstances to dictate his life. He amazingly endured the inconveniences of the feeding tube, and persisted with a positive attitude of getting well.

Last September (2015), he was fitted with a Gastric Pacemaker or Stimulator, and was taken off the GJ tube. This electrical device provides mild electrical stimulation to the lower stomach nerves. According to the California Pacific Medical Center, this device is placed below the rib cage in the abdomen, and mild electrical pulses are transmitted through a neurostimulator encouraging the stomach to contract, and to help relieve nausea and vomiting. This procedure worked for a month before Johnathan’s symptoms returned. He had to travel from Barbados to the hospital in the states to have the stimulator adjusted. The device would work for a short while and then the symptoms of vomiting would return.

The pacemaker was not having a lasting effect on Johnathan’s gastroparesis, so he discontinued its use and went back on the feeding tube. This therapy is reversible, and can be turned off at any time by the specialist. During this time, he had to go back to the hospital and it was discovered during several tests that the leads for the pacemaker were placed too low on the stomach, and needed to be higher to have a better effect. The changes were performed in April; however, he developed an infection so in May, they removed the pacemaker and sanitized the area. The pacemaker was replaced. Johnathan says, “I have been feeling better since May.” He was able to return to school after missing two years.

The pacemaker is working greatly according to Johnathan’s father. The feeding tube is also used just for insurance. Johnathan is not taking any medication other than an antacid once and a while, and Zofran for occasional nausea. “I am able to eat breakfast, lunch, a snack, and dinner. Some days I do not feel hungry at meal time. I also feel nausea sometimes, but much less than before.” His enthusiasm and passion for skateboarding is his therapy. Now, he is able to skateboard for 2-3 hours a day. He has also resumed his schoolwork and is doing quite well.

His favorite movie is Miracles from Heaven, about a young girl suffering from a rare digestive disorder who finds herself miraculously cured after surviving a terrible accident. The movie was very similar to what Johnathan experienced with GP, except as he points out, “My miracle came in the form of a pacemaker.”

Johnathan’s hope and courage is an inspiration for how we can overcome the challenges life presents. His determination is summed up in these words of encouragement: “Always believe in the person suffering with GP. It is frustrating when a doctor tells you that it may be in your head, when they do not know what is wrong. Research is the key towards understanding the illness and searching for a solution. Always keep fighting and remain positive. Life will get better with the right treatment. Never give up!”

Related sources used:

www.cpmc.org (California Pacific Medical Center)

www.digestivedistress.com

www.feedingtubeawareness.org

Rita Griffin is a Georgia native. She has a Bachelor of Science degree in Psychology and worked for the Georgia Department of Transportation for 15 years. She loves studying the Bible, reading, traveling, writing, and meeting people. Rita has published 4 books of poetry. She is married with two sons. Rita is a volunteer writer for G-PACT.

Paul Sylvester

Every GPer has a different story.  My ‘virtual GP family’ ranges from those spending many more days in hospitals than their homes to those who flair only every couple of years, from amputees and tubies to those who run marathons or compete in talent pageants, and everything in between.

I’m  one of the ‘lucky/blessed ones’!…GP probably from diabetes, diagnosed fast, insurance  for pacer approved fast, then decreasing amount/severity of GP  flair-ups, now I eat anything/everything–including  salads & steaks (without gristle & extra careful chewing)…..  Last ER visit for GP was last year due to a ‘perfect storm’ situation …… Since I can’t relate  well to situations of most other GPers I  try to send them virtual hugs,  positive thoughts & a feeling that they are not suffering alone out  there–that somewhere out in the vast ether someone is ‘out there and  caring for them’ along with an encouraging reminder to NEGU! (Never Ever Give Up!)  261671_10150235671826235_3285838_n

I’m also 64, living just south of Green Bay  Wisconsin, retired with too much time on  my hands so I’m on FB too  much….(LOL)   I’m a very frequent poster in some G-PACT groups [Prayer Chain; Gutsy Guys Garage; Coping w/GP….] although I belong to over 20 GP groups (many inactive).  A few years ago my wife and I had the pleasure of hanging out for a day or so with G-PACT bigwigs Carissa Haston, Brittney Riley and Cindy Tessmer when they were only a state away for an Oley Foundation convention….  Every year I tease Carissa that I’ve got my entire state wearing Green & Gold every Friday for GP Awareness [but that due to our regional speaking dialect, G-PACT is pronounced Go Packers !!  (LOL)]

My Story – Dotty Fanelli

Dotty FanelliI remember the exact day it happened. It was the Friday before Memorial Day 2014. The unbearable pain that began in my upper abdomen caused me to go to the local ER. They told me to call my GI on Tuesday and since my bloodwork looked fine there was nothing they could do. I was discharged. My husband insisted we go to a larger hospital because there was clearly something wrong. We drove an hour with me in ungodly pain. They admitted me for observation. The GI came in the next day and told me to call my GI on Tuesday. I wanted to scream for help!

During the course of the summer I went to the larger ER six times for extreme pain and vomiting. I quickly learned that few doctors know about gastroparesis and furthermore, you’re treated as a drug seeker because of this. There were some wonderful doctors, but they truly didn’t know what to do. I just wanted relief from the pain. I had never experienced anything like this and I’m pretty tough! I found out during this period that I had lost 40 pounds in 10 weeks. I walked/sat around wrapped in a giant fleece because I was always freezing!

I finally saw my GI the week after observation. He ordered an endoscopy. The endoscopy showed slow motility and the doctor put me on Reglan. My only question lying groggily after the procedure “will it stop the pain?” No answer. I realize that pain is not the normal primary symptom for gastroparesis, but it was mine. I anxiously waited for the results because I may have an answer to the pain. Finally, a call from “my” GI after three days. He simply said he couldn’t treat me. He said I may have a disease. He then suggested I go to Jefferson or University of Penn. He gave me the number to Jefferson. Utter shock was my reaction. How could he just dismiss me? I’ll never forget/forgive this. My pain had now started in my upper abdomen and moved to my right rib cage. My parents came up from Florida for 5 weeks at this point. I simply couldn’t function anymore.

I went to Jeff because they had an earlier appointment. Jeff, like Penn is supposed to be an excellent hospital of Philadelphia. My young and inexperienced doctor did send me for a GES. It showed slow motility. He told me I had Gastroparesis in June 2014. I asked several questions. I was frustrated because most of his answers were “I don’t know”. He was nice enough, but I needed answers. He finally sent me for an MRI which showed nothing. I decided to try to go to another hospital for a second opinion with someone who was supposed to be an expert in the field. This was the single most horrible interaction I have ever had with a “physician”. The long and short of it is after a long interview asking about sexual abuse of myself and family, he decided he didn’t want to be involved. I had put all of my faith in this man! I was desperate for help! He said I needed a psychiatrist. He also said he wasn’t the only “drug man” in town. Get my drugs somewhere else. Go back to Jeff! I was heartbroken at this point. I was losing hope.

I had to educate myself. I used G-PACT, the net, books and support groups on the Internet. I learned about diet modification. I barely ate anyway, but I did discover that if I didn’t eat solids after1-2pm, my pain was lessened. I tried remedies for constipation. None worked. I had to get a prescription. I struggle with fatigue. My hair is falling out which is most upsetting! My stomach is distended to 63 inches. That’s embarrassing to admit, but I’m tired of being ashamed.

My disease took a turn in June 2015. My nausea medication stopped working. I was told it was the best, so no other prescriptions! I was nauseous 24/7 and dry heaving/vomiting. It was awful and took everything out of me. One day I ate nothing and had no vomiting so I stopped eating. I didn’t even miss food. After nine days without a morsel of food, my sister who is a nurse in CA insisted that I go to the hospital for fluids. I had sworn off hospitals after the summer of 2014. I had lost 18 pounds in a month and a half. My husband begged me to go. I was not myself and clearly needed help. The doctor knew all about gastroparesis, was kind, and truly helped me by putting me on Reglan short term. I’m happy to report I’m on new medication which on most days keeps the nausea at bay and allows me to eat. I also have a pain management doctor. We struggle, but I’m moving forward even if he thinks pain is not associated with gastroparesis. He’ll come around because I am so tired of hearing that!

I’ve learned so much about the kindness of fellow GP brothers and sisters. I have the privilege of coordinating G-PACT Send A Smile. It gives me purpose. Members do anything to help those in need. I am so proud of this group and its purpose. It has helped me grow as a person and as someone who has this disease. And of course, I wear green every Friday to promote awareness!

Carissa Haston

We are thankful to celebrate an additional nine years of life for our founder and president, Carissa Haston. On March 13, 2006, Carissa was given a second chance at life through the gift of life. She received a stomach, small bowel, pancreas, liver, and duodenum at the University of Pittsburgh Medical Center. This was necessary due to a combination of medical problems which included gastroparesis, CIPO, liver failure, and eventually short gut. Although not common and an extreme measure, it can be life-saving as a last resort.

Carissa is thankful for everyone who has been involved in saving her life and supporting her through the long process! She is grateful to be able to see the growth of G-PACT over the last nine years and believes that no one with DTP will need to pursue this extreme option in a few years!

Here is an article about her story and info on the small bowel transplant.

Patient Spotlight: Debbie Kinder

DebbieKinder SMHi, my name is Debbie Kinder.

I have one son age 24 who is in the army and a student at Marshal University in Huntington WV.  I am 48 years young. I was born and raised in San Diego California. I hope to move back there some day. Or at least a warmer dry climate. I have over 20 years experience working with people. I was working 15 hours a day as a social worker and 12-15 hours a day as a caregiver. That ended about three years ago when I began violently throwing up every night without fail while I worked this was not good. I had to stop working as a caregiver when I began vomiting in front of my clients without warning. I was so embarrassed. Over ten years my symptoms were mild and I was diagnosed as having acid reflux and anxiety related nervousness stomach. But when the violent nausea and vomiting started. The GI decided to do an endoscopy. I fasted for the procedure but even the day of the procedure I was still throwing up. And when he did my endoscopy he took pictures and showed me the food that was still in my esophagus and my stomach so he referred me to a surgeon.

The surgeon did a GES study which confirmed I had GP. My rate of digestion was 57% after 4 hours. He said my safest option was to do the gastric pacemaker. So I did. It did not work for me so next they did a GJ tube. I began rejecting the tube feeds but my surgeon refused to do TPN. I ended up going to Cleveland clinic as an inpatient because I was real sick. They put me on TPN and sent me to a snf (skilled nursing facility) to learn how to do TPN at home. But when I got to the snf they told me they were taking me off TPN and starting the j feeds and I was not allowed to go home until I could tolerate the feeds. It was a nightmare. I made myself do the feeds despite the pain, bloat and nausea. When I got home I went back to Cleveland clinic and they re admitted me because the tube had busted and was infected. They were upset that my local GI and surgeon did not follow the clinics order.

I wanted to start a face to face support group both to offer hands on support to GPers in my community and to educate anyone I can. So I got the newspaper to write a article about GP and how it affects my life and my goal of starting the group I added my contact information so if a GPer was out there they could sign up for the group. Well during this whole process, I joined a wonderful support group called G-PACT. I had so much support especially when I was in the nursing home. I received a message from G-PACT admin to be a G-PACT volunteer facilitator/ trainer. My job is to train anyone interested in having a support group in their community. Across the USA. I was excited to receive such a responsibility. And as my support group began to take shape I began offering others online to be trained on how to open their own support group. I have been writing a training manual for G-PACT as well as welcome books for my support group.

Gastroparesis has been a ruthless enemy, but I have been able to use it in many ways to help others in their journey.  Ive been able to share with medical staff who really just didn’t have a clue.I encourage advocating or sharing about Gastroparesis everywhere I go and with everyone I meet, yes it’s that important. I’m very thankful for the people that I have met through G-PACT.  Each person I’ve met through G-PACT has helped me fight for better health care for my condition. I’m grateful for the level of support I find.  Very thankful.

Sincerely,
Debbie Kinder
G-PACT Support Group Coordinator/Trainer