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Wednesday, October 24, 2012

Post Spinal Stimulator Surgery - Day 1

I had my surgery yesterday to have my spinal cord stimulator put in. Information about a spinal cord stimulator is HERE. The surgery wasn't bad. They put me completely out. I didn't even realize they were doing it until I saw this huge syringe. It looked like a PVC pipe.

This is day one. I do not have as much knee pain as I did before. I can actually sit Indian style without having severe pain. My back is really, really sore from the surgery so it's a bit hard to sleep. I am a bit tired today but I'm feeling a little better. I want to sleep but every time I try, I lay on my back and it jerks me awake because it hurts so bad. I have staples in my back and they are going to remove the staples in a week. I can't bend, lift, twist, take a shower, or anything before the staples come out.

I vomited once last night after I got home. I hope that this stimulator will cut down the vomiting since vomiting is also my pain response. Since I no longer have to worry about my knee, I can focus on the gastroparesis and see if that's where the vomiting is from.

I bought a cook book for GP with recipes that will be easily digestible. The problem is that if I eat six small meals a day, one small meal will fill me up for the entire day. I'm not sure how this is going to work because nothing seems to stay down.

I looked at pictures of me from last Christmas and now - I've lost so much weight. My face almost looks sunken in and pale. This is not the way I wanted to lose weight. My stomach is also bloated and swollen. I have severe cramps when I do try to eat, even with yogurt. I've been drinking a lot of apple juice but that's hit or miss with the vomiting, too.

I'm looking forward to hiking again though. =)

Sunday, October 21, 2012

18 Year Dies from Gastroparesis Complications

This is why I started this blog. I wanted to share awareness with you all. I have the same disease this girl did. Please read the article. There are several points I want to convey to help you understand what I go through on a daily basis.


We need more awareness. No one should die because of this disease. My heart aches for her family and friends but I'll keep fighting for her and my other GP members. This just motivates me to do more and keep fighting. I know that I've been feeling discouraged lately, but this was the kick in the pants I needed to snap out of it.

Pay attention to the bold texts. That's similar to my story.



SPANISH FORK — A Utah woman who recently died from Gastroparesis is raising national awareness about the disease and inspiring people across the country. Haley Stonehocker of Mapleton died in her sleep on Thursday night. Her family and friends say she was the first one to help comfort anyone in need and she left this world wanting to help educate more people about her illness.

With a green ribbon on their chests, members of the G-Pact online community (Gastroparesis Patient Association for Cures and Treatments) gathered at Haley Stonehocker's funeral - standing together to honor one of their own. They call themselves "GP Sisters."

The women, who are in their early 20s, traveled from Boise, Reno, Denver, Syracuse, and the Salt Lake City are for the young woman they met just a couple of years ago. Cortney DeHoyos traveled from Denver, Colo. to honor Stonehocker and says she inspired her to help educate others about the illness.

"I had to drop out of college because I'm so sick all the time," said Cortney DeHoyos. "I'm constantly in and out of hospitals."

DeHoyos said having the illness can be discouraging for young people who suffer with symptoms daily.

"Sometimes people find our illness so unique and rare so it can't be real," said DeHoyos. "So we must be making it up."

"It (Gastroparesis) basically took me from being a mom to being in bed 24-7,"said Chelsea Rushton of Syracuse. "And having my parents raise my kids."

For Rushton the emotions of losing her friend are still raw. Just weeks ago, she visited Stonehocker in the hospital.

"We would text all night," said Rushton. "My husband would tell me ‘get off the phone and go to bed.' And I just couldn't."

Gastroparesis is a condition that affects all ages and races. The disease inhibits the stomach muscles' ability to function properly, which can interfere with digestion. It causes nausea and vomiting, and affects the body's ability to receive proper nutrition. Stonehocker became bedridden and was tied to a feeding tube in the hospital. Patients describe the illness as having the constant feeling of morning sickness or having the flu every day.

"It's very difficult just driving on the road. Many of us are nauseous just sitting in bed," said Maddie Cullen of Boise.
Related Stories:
Bedridden 18-year-old hopes treatment will help rare condition
Haley Stonehocker is a bright and charming girl who just turned 18. But the just-turned- adult is dealing with more than adulthood now.

Cullen is studying at the University of Utah and hopes to become pediatric gastroenterologist. She said Stonehocker inspired her to want to help kids suffering with Gastroparesis.

"We've already lost a few (people) this month to GP,"said Cullen. "It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."

Some say having the disease is especially heartbreaking for younger people because they say their peers just don't understand what they're going through. Some say they've lost friends because of the disease.

"You don't know if you're going to wake up and feel nauseous," said Stephanie Hyatt of Denver, Colo. "And go somewhere and have to go vomit in the bathroom and cancel on friends."

Hyatt said belonging to the online community with Stonehocker was a tremendous strength to her.

"She'd always say that I'm such a beautiful person inside and out," said Hyatt. "How I could make it through everything."

Colleen Beener sits on the board of G-Pact. She says it's not clear how many people nationwide suffer from Gastroparesis mainly because the illness is often misdiagnosed as an eating disorder.

"There are very few good doctors who understand this disease," said Beener.
"We've already lost a few (people) this month to GP. It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."
–Maddie Cullen

Beener said most people with Gastroparesis travel hundreds of miles and go to other extremes to seek diagnosis and treatment.

"There's just not a lot of understanding of this disease. There's not a lot of research going on about this disease. There aren't any good medications in this country for the disease," said Beener. "Most of us that find something that works we get it out of the country and it's not FDA approved but we do it anyway because it's the only way we can get through the day."


Dr. Troy Madsen, University of Utah, confirmed that Gastroparesis is difficult to diagnose.

"There isn't a blood test that can simply diagnose it," he said.

Madsen said the tests to diagnose the illness are invasive and can result in inconclusive diagnoses. Still, he recommends patients seek a gastrointestinal specialist to better diagnose the disease.

Tuesday, the group released green balloons at the track and field grounds of Maple Mountain High School where Haley Stonehocker was a track star. Alli Baker shared that interest with Stonehocker, who inspired her to run track and field even while suffering from her Gastroparesis symptoms.

"I always carried that never ever give up mentality that Haley always taught me," said Baker. "Mine's not as severe as hers so I was running for her and those people who couldn't do it when they wanted to."

The GP sisters took one final lap around the track for their friend Haley. It's a gesture of hope - for more education, better diagnoses and treatment so that those living with Gastroparesis will have a better quality of life.

The link to this article can be found HERE.

Saturday, October 20, 2012

Updates on GP Management

I just downloaded a book that I hope will help that I found through the Gastroparesis community on Facebook. It's called, "Living Well with Gastroparesis" by Crystal Saltrelli. It has 75 recipes that should be easier for me to digest. I'm also going to try and keep a food journal to see what works and what doesn't.

What makes me happy about this book is that the author's story sounds strangely like mine. She went to the doctor and was diagnosed with Gastroparesis without hearing that word before, ever. Then, she went to the Motility Specialist who wrote her off because the Specialist felt that she wasn't a severe case, even though she was hospitalized over and over (much like me) for nausea, vomiting, and severe pain. It's just scary how similar my situation is to this woman.

The recommendation is to eat six small meals a day but that's challenging for me. I'm usually full after one small meal for several days, IF it stays down. I went to the doctor yesterday, dehydrated, and my blood pressure was back up to 140/110 because I was in pain and spent the last three days vomiting. I vomit, on average, about 6 to 8 times a day. Mostly, it's just green stomach acid because there's nothing left to come up at this point. Liquids won't even stay down.

I hope this book will help me learn to manage this condition. She says that the gastric pacemaker worked wonders for her and helped her to digest food easier. This was mentioned to me once by my GI doctor, but I haven't heard much else about it.

I can't live this way anymore. I can't leave my house without a bucket. I barely eat. I've lost 20 pounds. The doctors aren't sure what to do. The Motility Specialist doesn't want to see me until I need a feeding tube but I'd prefer not to have it come to that, you know?

I'm lethargic and tired. My friends don't want to hang around me, because let's face it, I can't go anywhere with my head shoved into a bucket. I just feel isolated and alone sometimes - and it hurts because no one understands this condition. My husband has been my rock and has been really supportive. But, I miss going out, even little things like to the movies or camping. The smell of food makes me really ill. I have to hide away from it when people are cooking downstairs.

I went to my regular doctor yesterday. He gave me Phenergan and Bentyl, which have helped in the past but it's hard for me to keep pills down. My stomach is bloated and swollen with severe pain. My skin is clammy because I have a fever. I managed to catch some kind of stomach virus ... and let me tell you, that plus gastroparesis makes me feel like I'm dying. The doctor wanted to put in an IV to hydrate me, but I was so dehydrated that he couldn't find a vein...not even in my FOOT! He said I should go to the emergency room but I just couldn't bring myself to go. I didn't want to wait 6 to 8 hours to be given pain and nausea medicine to be sent home just to have it all repeat over again. I want help managing the problem - not masking the symptoms.

Tuesday, I have a surgery scheduled for the Spinal Cord Electrical Stimulator (back surgery to control the nerve damage). This should help the nerves in my knee from misfiring me to tell me my knee is in severe pain. I'm hoping this will cut the vomiting in half as vomiting is also my pain response. That way, I can tell what is coming from my stomach and my stomach alone. Also, this will help me to walk again without making me feel like I've broken a bone in my knee. Walking is supposed to help digestion.

I will start the food journal tomorrow. I'm going to browse through these recipes to see if I can find anything worth making. I might have to make my husband do it because anything involving cooking or being near food makes me ill. I don't know if it's just in my head or what, but I can't deal with strong smells right now. I've been resting and trying not to push myself. I've been trying to drink gatorade, apple juice, and eat yogurt. Soft things that won't be too harsh on my stomach. I ate rice last night which was a bad mistake because now I have horrible gastric cramping. Before long, I just might have to buy some baby food and go from there.

What's even worse is that I've felt too sick to do anything. It's like everything I used to care about isn't even a priority at the moment because I am just so ill. I hate feeling that way. I miss my friends. I miss my family. It's even hard for me to play a video game because the games make me motion sick.

I just wish doctors wouldn't write me off because I'm not in need of a feeding tube yet. You think that they'd try to keep me from getting one, right? I'm just not sure what to do at this point. I don't want to be hospitalized for another 8 days but at the same time, I'm too weak to even take a shower to wash my hair.

Please Sign This Petition

Hello everyone,

I wanted to make a personal plea to all of my friends and family. This petition effects me personally. I would like to spread awareness about this rare condition, for doctors to find better treatment options (I've been hospitalized 16 days so far with a lot of invasive procedures, which you guys have read about), and I want a cure found for this condition. I know that you read my blog, so you know how bad I've been sick for the past seven months.

This would mean a lot to me. We need 25,000 signatures and we only have 130 so far. Please, take a moment to sign your name and please share with your friends. I can't tell you how miserable I am and I would like some more research to be done on this condition.

For those of you who may not know what gastroparesis is, it's when your stomach muscles are paralyzed, so you have delayed gastric emptying. In my case, my food doesn't stay down and I vomit at least 6 to 8 times daily. I have to carry a bucket in the car when I go anywhere. This is no way to live. And of course, the doctors can give me pills to control the nausea, but those don't stay down either.

Please, I'm begging you from the bottom of my heart, please sign this. I really need your support right now. There are many people out there who have this condition worse than I do. The only treatment options currently are sticking a pacemaker into your stomach, having a gastric bypass, and a feeding tube. None of those sound like fun.

I would like to finish my last year of school. I can't do that vomiting the way I do now. So, please, take the time to just put your name on THIS PETITION.

I thank you in advance for being a good friend and supporting this cause. It means a lot to me. Really and truly. I want a normal life again. While that may not be any time soon, this petition gives me hope. Please, give me hope by signing it.

The url is: https://petitions.whitehouse.gov/petition/gastroparesis-gp-we-need-more-awareness-and-funding-it-effects-all-ages-and-races-more-research-no/SNw7GMp8

Thursday, October 4, 2012

Inspiration and How to Keep Your Marriage Strong During a Chronic Illness

I have found an article about keeping your relationship and/or marriage strong during a chronic illness. It can be tough to the caretakers because they may not know what to say or how to say it. For those of you who are caretakers, you should join the GREEN'S NOT EASY FACEBOOK GROUP for support from others who understand what you're going through. Now for the article. It says,

Chronic illness can strain your marriage to a point where you may feel like leaving. However, there are things you can do to cope with this challenge. You and your spouse can be there for each other through these hard times.

Instructions

1. Keep lines of communication open. Realize that a chronic illness in a marriage is an issue both of you have to cope with, not just the sick one. Help each other accept the illness and the negative feelings that you both sometimes feel.


2. Nurture your spouse in times of pain even if you don't feel like it. Be careful not to grow too dependent on taking care of her through her chronic illness, though, so you don't feel resentment when she gets stronger and wants more independence.


3. Allow each of you to have time alone. You should get away at least once a week and do something fun. Take a walk or do something creative.


4. Pursue your interests just as you would if you both were well. It's tempting to push aside the things you enjoy, such as art or sports because you feel you must be there for your ill spouse. After your spouse has accepted the illness, he should modify the activities he enjoys rather than give them up.


5. Take vacations together. Even a visit to sympathetic family members renews you. A change of scenery will give you both a breath of fresh air and allow you to get your minds off the illness for a while.


6. Set up as many activities as possible that don't have anything to do with the illness. Volunteer together at a local nonprofit. Take a course at a community college. Do fun things weekly with your children or grandchildren.


7. Establish a strong support network. This could include counseling to help you cope with the chronic illness. Talk to trusted family members and friends about your worries. It will help you cope if you've got an outlet for your anxieties. However, be careful not to betray your spouse's privacy.







How to keep your marriage strong during a chronic illness HERE.

Wednesday, October 3, 2012

Research sheds light on debilitating medical condition

Researchers from the Auckland Bioengineering Institute (ABI) have accurately mapped the patterns of abnormal gastric electrical activity that occurs during gastroparesis, a debilitating stomach condition.

Dr Gregory O'Grady, from the Auckland Gastrointestinal Research Group based at the ABI, says the new findings provide for the first time an accurate and detailed description of gastric dysrhythmias in humans that will help in the development of new diagnostic and treatment options.

Gastroparesis, which affects predominately women and 10 per cent of diabetics, is a medical condition that affects the stomach's ability to empty itself resulting in a reduced quality of life due to chronic nausea, vomiting, abdominal bloating and pain.

Abnormal electrical activity in the stomach or gastric dysrhythmias was known to be associated with gastroparesis but until now no accurate descriptions of these abnormalities existed, says Dr O’Grady.

“This is because previous research had been impeded due to there being no adequate methods to investigate gastric electrical activity,” he says.

The research project involved surgeons, engineers and biomedical scientists from The University of Auckland, the Mayo Clinic in the US, and The University of Mississippi.

The Gastrointestinal Group’s research, which was published in the prestigious international medical journal Gastroenterology, required several years of technical development.

“We developed new clinical devices consisting of sheets of hundreds of electrodes that could be laid over the stomach to precisely track electrical patterns during surgery. A new software platform for processing these patterns also had to be developed by the research team, says Dr O’Grady.

“Gastroparesis is a devastating disease that is particularly difficult to diagnose and treat, and its causes have been poorly understood. Our research provides significant new insights into the disease, and opens the door to advanced new treatment options such as the use of gastric pacemakers, he says.

“We hope that over the next few years our devices will evolve into routine clinical tools for diagnosing gastroparesis as well as other significant disorders of stomach function,” says Dr O’Grady.

The research programme was led for many years by the late Professor Andrew Pullan, a principal investigator with the ABI and a member of the Department of Engineering Science within the Faculty of Engineering, who passed away earlier this year.

The research is continued by Dr O’Grady, and the other lead investigators of the study Drs Leo Cheng and Peng Du from the ABI and Professor John Windsor from the Faculty of Medical and Health Sciences.

The research was funded primarily by a project grant from the Health Research Council of New Zealand (HRC).

The University of Auckland

The Link is HERE.

Also, I feel this way right now:



Update - Vomiting and Allergic Reaction

After the surgery for the trial for the left knee, I managed to have a severe allergic to the tape that the doctors used to tape up my back. I told the nurses when they were putting in the IV that I was allergic to latex, told my doctor I was allergic to latex, and told them on the operating table before they put me under that I was allergic to latex.

The tape they put on my back started to itch. I thought that maybe it was just because I was hot and sweating. So, I peeled off a bit of the tape and noticed hives, and a rash that looked like a sunburn with blisters. It itched and hurt so badly. I asked my sister to pull off most of the tape and put some cream on my back. I had cortisone cream. She replaced the tape with gauze and tape I had that in my first aid kit that I knew was latex free. She did this while I was waiting on the doctor to call me back. The doctor saw me on Friday and pulled the leads out and took off the tape. As it turns out, the tape had latex in it and the nurse said she would make sure to put that in my chart. I have a follow up visit tomorrow morning.

The positive part was that I was able to walk around the block without any pain and able to get some sleep without tossing and turning. The temporary implant trial did help and I told them I would like the permanent implant minus the evil tape.

I've been vomiting almost non stop since yesterday. It's worse than usual and I feel a bit draggy and have no energy. I'm not sure if I picked up a bug or what, but I'm just so tired. I had nightmares all of last night I just feel so queasy. I didn't even feel well enough to drive to the GI doctor. I managed to wreck my car as well by pulling off half of the bumper and tearing out the wheel well. So, I have my sister's car this week while she's in Arizona.

I'm trying to drink fluids and stay hydrated but it's so tough. I don't want to eat or drink anything.

Here's a picture of the reaction after the doctor took the leads out: