For the first time, researchers isolate adult stem cells from human intestinal tissue
Filed under: CTSA, Research, Medicine, Cell Biology and Physiology, Biomedical Engineering
The accomplishment provides a much-needed resource for scientists eager to uncover the true mechanisms of human stem cell biology. It also enables them to explore new tactics to treat inflammatory bowel disease or to ameliorate the side effects of chemotherapy and radiation, which often damage the gut.
For the first time, researchers isolate adult stem cells from human intestinal tissue
click to enlarge.
The UNC study was published online in the journal Stem Cells.
Media contacts: Michelle Maclay, 919-843-5365; Les Lang, (919) 966-9366, llang@med.unc.edu
Thursday, April 4, 2013
CHAPEL HILL, N.C. – For the first time, researchers at the University of North Carolina at Chapel Hill have isolated adult stem cells from human intestinal tissue.
The accomplishment provides a much-needed resource for scientists eager to uncover the true mechanisms of human stem cell biology. It also enables them to explore new tactics to treat inflammatory bowel disease or to ameliorate the side effects of chemotherapy and radiation, which often damage the gut.
“Not having these cells to study has been a significant roadblock to research,” said senior study author Scott T. Magness, PhD, assistant professor in the departments of medicine, biomedical engineering, and cell biology and physiology at UNC. “Until now, we have not had the technology to isolate and study these stem cells – now we have to tools to start solving many of these problems”
The UNC study, published online April 4, 2013, in the journal Stem Cells, represents a leap forward for a field that for many years has had to resort to conducting experiments in cells from mice. While significant progress has been made using mouse models, differences in stem cell biology between mice and humans have kept researchers from investigating new therapeutics for human afflictions.
“While the information we get from mice is good foundational mechanistic data to explain how this tissue works, there are some opportunities that we might not be able to pursue until we do similar experiments with human tissue,” lead study co-author Adam D. Gracz, a graduate student in Magness’ lab. Megan K. Fuller, MD, was also co-lead author of the study.
The Magness lab was the first in the United States to isolate and grow single intestinal stem cells from mice, so they had a leg up when it came to pursuing similar techniques in human tissue. Plus the researchers were able to get sections of human small intestine for their experiments that otherwise would have been discarded after gastric bypass surgery at UNC.
To develop their technique, the researchers investigated whether the approach they had taken in mice would work in human tissue. They first looked to see if the same molecules they had found stuck on the surface of mouse stem cells were also present on human stem cells. The researchers established that these specific molecules – called CD24 and CD44 -- were indeed the same between the two species. They then attached fluorescent tags to these molecules and used a special machine called a fluorescence activated cell sorter to identify and isolate the stem cells from the small intestine samples.
They found that not only could they isolate the human stem cells from human intestinal tissue, but that they also could separate different types of intestinal stem cells from each other. These two types of stem cells – active and reserve – are a hot topic for stem cell researchers who are still trying to figure out how reserve stem cells cycle in to replenish active stem cells damaged by injury, chemotherapy or radiation.
“Now that we have been able to do this, the next step is to carefully characterize these populations to assess their potential,” said Magness. “Can we expand these cells outside of the body to potentially provide a cell source for therapy? Can we use these for tissue engineering? Or to take it to the extreme, can we genetically modify these cells to cure inborn genetic disorders or inflammatory bowel disease? Those are some questions that we are going to explore in the future.”
The research was funded by the North Carolina Translational and Clinical Sciences Institute (NC TraCS), home of the Clinical and Translational Science Awards (CTSA) at UNC.
Link to the Article is HERE.
Tuesday, April 9, 2013
Monday, April 8, 2013
Painkillers in Your Kitchen: An Alternative to Taking Pain Medicine
One of my friends shared this on Facebook recently, so I thought I would pass it along. I know that with GP/DTP, everyone can tolerate different things. However, I am not a doctor and this does not take the place of a doctor's advice. But, if you're desperate, it could come in handy.
20 Painkillers in Your Kitchen: An alternative to taking pain medicine.
Make muscle pain a memory with ginger
When Danish researchers asked achy people to jazz up their diets with ginger, it eased muscle and joint pain, swelling and stiffness for up to 63 percent of them within two months. Experts credit ginger’s potent compounds called gingerols, which prevent the production of pain-triggering hormones. The study-recommended dose: Add at least 1 teaspoon of dried ginger or 2 teaspoons of chopped ginger to meals daily.
Cure a toothache with cloves
Got a toothache and can’t get to the dentist? Gently chewing on a clove can ease tooth pain and gum inflammation for two hours straight, say UCLA researchers. Experts point to a natural compound in cloves called eugenol, a powerful, natural anesthetic. Bonus: Sprinkling a ¼ teaspoon of ground cloves on meals daily may also protect your ticker. Scientists say this simple action helps stabilize blood sugar, plus dampen production of artery-clogging cholesterol in as little as three weeks.
Heal heartburn with cider vinegar
Sip 1 tablespoon of apple cider vinegar mixed with 8 ounces of water before every meal, and experts say you could shut down painful bouts of heartburn in as little as 24 hours. “Cider vinegar is rich in malic and tartaric acids, powerful digestive aids that speed the breakdown of fats and proteins so your stomach can empty quickly, before food washes up into the esophagus, triggering heartburn pain,” explains Joseph Brasco, M.D., a gastroenterologist at the Center for Colon and Digestive Diseases in Huntsville, AL.
Erase earaches with garlic
Painful ear infections drive millions of Americans to doctors’ offices every year. To cure one fast, just place two drops of warm garlic oil into your aching ear twice daily for five days. This simple treatment can clear up ear infections faster than prescription meds, say experts at the University of New Mexico School of Medicine. Scientists say garlic’s active ingredients (germanium, selenium, and sulfur compounds) are naturally toxic to dozens of different pain-causing bacteria. To whip up your own garlic oil gently simmer three cloves of crushed garlic in a half a cup of extra virgin olive oil for two minutes, strain, then refrigerate for up to two weeks, suggests Teresa Graedon, Ph.D., co-author of the book, Best Choices From The People’s Pharmacy. For an optimal experience, warm this mix slightly before using so the liquid will feel soothing in your ear canal.
Chase away joint and headache pain with cherries
Latest studies show that at least one in four women is struggling with arthritis, gout or chronic headaches. If you’re one of them, a daily bowl of cherries could ease your ache, without the stomach upset so often triggered by today’s painkillers, say researchers at East Lansing ’s Michigan State University . Their research reveals that anthocyanins, the compounds that give cherries their brilliant red color, are anti-inflammatories 10 times stronger than ibuprofen and aspirin. “Anthocyanins help shut down the powerful enzymes that kick-start tissue inflammation, so they can prevent, as well as treat, many different kinds of pain,” explains Muraleedharan Nair, Ph.D., professor of food science at Michigan State University . His advice: Enjoy 20 cherries (fresh, frozen or dried) daily, then continue until your pain disappears.
Fight tummy troubles with fish
Indigestion, irritable bowel syndrome, inflammatory bowel diseases...if your belly always seems to be in an uproar, try munching 18 ounces of fish weekly to ease your misery. Repeated studies show that the fatty acids in fish, called EPA and DHA, can significantly reduce intestinal inflammation, cramping and belly pain and, in some cases, provide as much relief as corticosteroids and other prescription meds. “EPA and DHA are powerful, natural, side effect-free anti-inflammatories, that can dramatically improve the function of the entire gastrointestinal tract,” explains biological chemist Barry Sears, Ph.D., president of the Inflammation Research Foundation in Marblehead , MA . For best results, look for oily fish like salmon, sardines, tuna, mackerel, trout and herring.
Prevent PMS with yogurt
Up to 80 percent of women will struggle with premenstrual syndrome and its uncomfortable symptoms, report Yale researchers. The reason: Their nervous systems are sensitive to the ups and downs in estrogen and progesterone that occur naturally every month. But snacking on 2 cups of yogurt a day can slash these symptoms by 48 percent, say researchers at New York ’s Columbia University . “Yogurt is rich in calcium, a mineral that naturally calms the nervous system, preventing painful symptoms even when hormones are in flux,” explains Mary Jane Minkin, M.D., a professor of gynecology at Yale University .
Tame chronic pain with turmeric
Studies show turmeric, a popular East Indian spice, is actually three times more effective at easing pain than aspirin, ibuprofen or naproxen, plus it can help relieve chronic pain for 50 percent of people struggling with arthritis and even fibromyalgia, according to Cornell researchers. That’s because turmeric’s active ingredient, curcumin, naturally shuts down cyclooxygenase 2, an enzyme that churns out a stream of pain-producing hormones, explains nutrition researcher Julian Whitaker, M.D. and author of the book, Reversing Diabetes. The study-recommended dose: Sprinkle 1/4 teaspoon of this spice daily onto any rice, poultry, meat or vegetable dish.
End endometrial pain with oats
The ticket to soothing endometriosis pain could be a daily bowl of oatmeal. Endometriosis occurs when little bits of the uterine lining detach and grow outside of the uterus. Experts say these migrating cells can turn menstruation into a misery, causing so much inflammation that they trigger severe cramping during your period, plus a heavy ache that drags on all month long. Fortunately, scientists say opting for a diet rich in oats can help reduce endometrial pain for up to 60 percent of women within six months. That’s because oats don’t contain gluten, a trouble-making protein that triggers inflammation in many women, making endometriosis difficult to bear, explains Peter Green, M.D., professor of medicine at Colombia University .
Soothe foot pain with salt
Experts say at least six million Americans develop painful ingrown toenails each year. But regularly soaking ingrown nails in warm salt water baths can cure these painful infections within four days, say scientists at California ’s Stanford University . The salt in the mix naturally nixes inflammation, plus it’s anti-bacterial, so it quickly destroys the germs that cause swelling and pain. Just mix 1 teaspoon of salt into each cup of water, heat to the warmest temperature that you can comfortably stand, and then soak the affected foot area for 20 minutes twice daily, until your infection subsides.
Prevent digestive upsets with pineapple
Got gas? One cup of fresh pineapple daily can cut painful bloating within 72 hours, say researchers at California ’s Stanford University . That's because pineapple is natually packed with proteolytic enzymes, digestive aids that help speed the breakdown of pain-causing proteins in the stomach and small intestine, say USDA researchers.
Relax painful muscles with peppermint
Suffering from tight, sore muscles? Stubborn knots can hang around for months if they aren’t properly treated, says naturopath Mark Stengler, N.D., author of the book, The Natural Physician’s Healing Therapies. His advice: Three times each week, soak in a warm tub scented with 10 drops of peppermint oil. The warm water will relax your muscles, while the peppermint oil will naturally soothe your nerves -- a combo that can ease muscle cramping 25 percent more effectively than over-the-counter painkillers, and cut the frequency of future flare-ups in half, says Stengler.
Give your back some TLC with grapes
Got an achy back? Grapes could be the ticket to a speedy recovery. Recent studies at Ohio State University suggest eating a heaping cup of grapes daily can relax tight blood vessels, significantly improving blood flow to damaged back tissues (and often within three hours of enjoying the first bowl). That’s great news because your back’s vertebrae and shock-absorbing discs are completely dependent on nearby blood vessels to bring them healing nutrients and oxygen, so improving blood flow is essential for healing damaged back tissue, says Stengler.
Wash away pain injuries with water
Whether it’s your feet, your knees or your shoulders that are throbbing, experts at New York ’s Manhattan College , say you could kick-start your recovery in one week just by drinking eight 8-ounce glasses of water daily. Why? Experts say water dilutes, and then helps flush out, histamine, a pain-triggering compound produced by injured tissues. “Plus water is a key building block of the cartilage that cushions the ends of your bones, your joints’ lubricating fluid, and the soft discs in your spine,” adds Susan M. Kleiner, Ph.D., author of the book, The Good Mood Diet. “And when these tissues are well-hydrated, they can move and glide over each other without causing pain.” One caveat: Be sure to measure your drinking glasses to find out how large they really are before you start sipping, she says. Today’s juice glasses often hold more than 12 ounces, which means five servings could be enough to meet your daily goal.
Heal sinus problems with horseradish
Latest studies show sinusitis is the nation’s number one chronic health problem. And this condition doesn’t just spur congestion and facial pain, it also makes sufferers six times more likely to feel achy all-over. Horseradish to the rescue! According to German researchers, this eye-watering condiment naturally revs up blood flow to the sinus cavities, helping to open and drain clogged sinuses and heal sinus infections more quickly than decongestant sprays do. The study-recommended dose: One teaspoon twice daily (either on its own, or used as a sandwich or meat topping) until symptoms clear.
Beat bladder infections with blueberries
Eating 1 cup of blueberries daily, whether you opt for them fresh, frozen or in juice form, can cut your risk of a urinary tract infection (UTIs) by 60 percent, according to researchers at New Jersey’s Rutgers University. That's because blueberries are loaded with tannins, plant compounds that wrap around problem-causing bacteria in the bladder, so they can’t get a toehold and create an infection, explains Amy Howell, Ph.D. a scientist at Rutgers University.
Heal mouth sores with honey
Dab painful canker and cold sores with unpasteurized honey four times daily until these skin woes disappear, and they’ll heal 43 percent faster than if you use a prescription cream, say researchers at the Dubai Specialized Medical Center in the United Arab Emirates . Raw honey’s natural enzymes zap inflammation, destroy invading viruses and speed the healing of damaged tissues, say the study authors.
Fight breast pain with flax
In one recent study, adding 3 tablespoons of ground flax to their daily diet eased breast soreness for one in three women within 12 weeks. Scientists credit flax’s phytoestrogens, natural plant compounds that prevent the estrogen spikes that can trigger breast pain. More good news: You don’t have to be a master baker to sneak this healthy seed into your diet. Just sprinkle ground flax on oatmeal, yogurt, applesauce or add it to smoothies and veggie dips.
Cure migraines with coffee
Prone to migraines? Try muscling-up your painkiller with a coffee chaser. Whatever over-the-counter pain med you prefer, researchers at the National Headache Foundation say washing it down with a strong 12- ounce cup of coffee will boost the effectiveness of your medication by 40 percent or more. Experts say caffeine stimulates the stomach lining to absorb painkillers more quickly and more effectively.
Tame leg cramps with tomato juice
At least one in five people regularly struggle with leg cramps. The culprit? Potassium deficiencies, which occur when this mineral is flushed out by diuretics, caffeinated beverages or heavy perspiration during exercise. But sip 10 ounces of potassium-rich tomato juice daily and you'll not only speed your recovery, you'll reduce your risk of painful cramp flare-ups in as little as 10 days, say UCLA researchers.
20 Painkillers in Your Kitchen: An alternative to taking pain medicine.
Make muscle pain a memory with ginger
When Danish researchers asked achy people to jazz up their diets with ginger, it eased muscle and joint pain, swelling and stiffness for up to 63 percent of them within two months. Experts credit ginger’s potent compounds called gingerols, which prevent the production of pain-triggering hormones. The study-recommended dose: Add at least 1 teaspoon of dried ginger or 2 teaspoons of chopped ginger to meals daily.
Cure a toothache with cloves
Got a toothache and can’t get to the dentist? Gently chewing on a clove can ease tooth pain and gum inflammation for two hours straight, say UCLA researchers. Experts point to a natural compound in cloves called eugenol, a powerful, natural anesthetic. Bonus: Sprinkling a ¼ teaspoon of ground cloves on meals daily may also protect your ticker. Scientists say this simple action helps stabilize blood sugar, plus dampen production of artery-clogging cholesterol in as little as three weeks.
Heal heartburn with cider vinegar
Sip 1 tablespoon of apple cider vinegar mixed with 8 ounces of water before every meal, and experts say you could shut down painful bouts of heartburn in as little as 24 hours. “Cider vinegar is rich in malic and tartaric acids, powerful digestive aids that speed the breakdown of fats and proteins so your stomach can empty quickly, before food washes up into the esophagus, triggering heartburn pain,” explains Joseph Brasco, M.D., a gastroenterologist at the Center for Colon and Digestive Diseases in Huntsville, AL.
Erase earaches with garlic
Painful ear infections drive millions of Americans to doctors’ offices every year. To cure one fast, just place two drops of warm garlic oil into your aching ear twice daily for five days. This simple treatment can clear up ear infections faster than prescription meds, say experts at the University of New Mexico School of Medicine. Scientists say garlic’s active ingredients (germanium, selenium, and sulfur compounds) are naturally toxic to dozens of different pain-causing bacteria. To whip up your own garlic oil gently simmer three cloves of crushed garlic in a half a cup of extra virgin olive oil for two minutes, strain, then refrigerate for up to two weeks, suggests Teresa Graedon, Ph.D., co-author of the book, Best Choices From The People’s Pharmacy. For an optimal experience, warm this mix slightly before using so the liquid will feel soothing in your ear canal.
Chase away joint and headache pain with cherries
Latest studies show that at least one in four women is struggling with arthritis, gout or chronic headaches. If you’re one of them, a daily bowl of cherries could ease your ache, without the stomach upset so often triggered by today’s painkillers, say researchers at East Lansing ’s Michigan State University . Their research reveals that anthocyanins, the compounds that give cherries their brilliant red color, are anti-inflammatories 10 times stronger than ibuprofen and aspirin. “Anthocyanins help shut down the powerful enzymes that kick-start tissue inflammation, so they can prevent, as well as treat, many different kinds of pain,” explains Muraleedharan Nair, Ph.D., professor of food science at Michigan State University . His advice: Enjoy 20 cherries (fresh, frozen or dried) daily, then continue until your pain disappears.
Fight tummy troubles with fish
Indigestion, irritable bowel syndrome, inflammatory bowel diseases...if your belly always seems to be in an uproar, try munching 18 ounces of fish weekly to ease your misery. Repeated studies show that the fatty acids in fish, called EPA and DHA, can significantly reduce intestinal inflammation, cramping and belly pain and, in some cases, provide as much relief as corticosteroids and other prescription meds. “EPA and DHA are powerful, natural, side effect-free anti-inflammatories, that can dramatically improve the function of the entire gastrointestinal tract,” explains biological chemist Barry Sears, Ph.D., president of the Inflammation Research Foundation in Marblehead , MA . For best results, look for oily fish like salmon, sardines, tuna, mackerel, trout and herring.
Prevent PMS with yogurt
Up to 80 percent of women will struggle with premenstrual syndrome and its uncomfortable symptoms, report Yale researchers. The reason: Their nervous systems are sensitive to the ups and downs in estrogen and progesterone that occur naturally every month. But snacking on 2 cups of yogurt a day can slash these symptoms by 48 percent, say researchers at New York ’s Columbia University . “Yogurt is rich in calcium, a mineral that naturally calms the nervous system, preventing painful symptoms even when hormones are in flux,” explains Mary Jane Minkin, M.D., a professor of gynecology at Yale University .
Tame chronic pain with turmeric
Studies show turmeric, a popular East Indian spice, is actually three times more effective at easing pain than aspirin, ibuprofen or naproxen, plus it can help relieve chronic pain for 50 percent of people struggling with arthritis and even fibromyalgia, according to Cornell researchers. That’s because turmeric’s active ingredient, curcumin, naturally shuts down cyclooxygenase 2, an enzyme that churns out a stream of pain-producing hormones, explains nutrition researcher Julian Whitaker, M.D. and author of the book, Reversing Diabetes. The study-recommended dose: Sprinkle 1/4 teaspoon of this spice daily onto any rice, poultry, meat or vegetable dish.
End endometrial pain with oats
The ticket to soothing endometriosis pain could be a daily bowl of oatmeal. Endometriosis occurs when little bits of the uterine lining detach and grow outside of the uterus. Experts say these migrating cells can turn menstruation into a misery, causing so much inflammation that they trigger severe cramping during your period, plus a heavy ache that drags on all month long. Fortunately, scientists say opting for a diet rich in oats can help reduce endometrial pain for up to 60 percent of women within six months. That’s because oats don’t contain gluten, a trouble-making protein that triggers inflammation in many women, making endometriosis difficult to bear, explains Peter Green, M.D., professor of medicine at Colombia University .
Soothe foot pain with salt
Experts say at least six million Americans develop painful ingrown toenails each year. But regularly soaking ingrown nails in warm salt water baths can cure these painful infections within four days, say scientists at California ’s Stanford University . The salt in the mix naturally nixes inflammation, plus it’s anti-bacterial, so it quickly destroys the germs that cause swelling and pain. Just mix 1 teaspoon of salt into each cup of water, heat to the warmest temperature that you can comfortably stand, and then soak the affected foot area for 20 minutes twice daily, until your infection subsides.
Prevent digestive upsets with pineapple
Got gas? One cup of fresh pineapple daily can cut painful bloating within 72 hours, say researchers at California ’s Stanford University . That's because pineapple is natually packed with proteolytic enzymes, digestive aids that help speed the breakdown of pain-causing proteins in the stomach and small intestine, say USDA researchers.
Relax painful muscles with peppermint
Suffering from tight, sore muscles? Stubborn knots can hang around for months if they aren’t properly treated, says naturopath Mark Stengler, N.D., author of the book, The Natural Physician’s Healing Therapies. His advice: Three times each week, soak in a warm tub scented with 10 drops of peppermint oil. The warm water will relax your muscles, while the peppermint oil will naturally soothe your nerves -- a combo that can ease muscle cramping 25 percent more effectively than over-the-counter painkillers, and cut the frequency of future flare-ups in half, says Stengler.
Give your back some TLC with grapes
Got an achy back? Grapes could be the ticket to a speedy recovery. Recent studies at Ohio State University suggest eating a heaping cup of grapes daily can relax tight blood vessels, significantly improving blood flow to damaged back tissues (and often within three hours of enjoying the first bowl). That’s great news because your back’s vertebrae and shock-absorbing discs are completely dependent on nearby blood vessels to bring them healing nutrients and oxygen, so improving blood flow is essential for healing damaged back tissue, says Stengler.
Wash away pain injuries with water
Whether it’s your feet, your knees or your shoulders that are throbbing, experts at New York ’s Manhattan College , say you could kick-start your recovery in one week just by drinking eight 8-ounce glasses of water daily. Why? Experts say water dilutes, and then helps flush out, histamine, a pain-triggering compound produced by injured tissues. “Plus water is a key building block of the cartilage that cushions the ends of your bones, your joints’ lubricating fluid, and the soft discs in your spine,” adds Susan M. Kleiner, Ph.D., author of the book, The Good Mood Diet. “And when these tissues are well-hydrated, they can move and glide over each other without causing pain.” One caveat: Be sure to measure your drinking glasses to find out how large they really are before you start sipping, she says. Today’s juice glasses often hold more than 12 ounces, which means five servings could be enough to meet your daily goal.
Heal sinus problems with horseradish
Latest studies show sinusitis is the nation’s number one chronic health problem. And this condition doesn’t just spur congestion and facial pain, it also makes sufferers six times more likely to feel achy all-over. Horseradish to the rescue! According to German researchers, this eye-watering condiment naturally revs up blood flow to the sinus cavities, helping to open and drain clogged sinuses and heal sinus infections more quickly than decongestant sprays do. The study-recommended dose: One teaspoon twice daily (either on its own, or used as a sandwich or meat topping) until symptoms clear.
Beat bladder infections with blueberries
Eating 1 cup of blueberries daily, whether you opt for them fresh, frozen or in juice form, can cut your risk of a urinary tract infection (UTIs) by 60 percent, according to researchers at New Jersey’s Rutgers University. That's because blueberries are loaded with tannins, plant compounds that wrap around problem-causing bacteria in the bladder, so they can’t get a toehold and create an infection, explains Amy Howell, Ph.D. a scientist at Rutgers University.
Heal mouth sores with honey
Dab painful canker and cold sores with unpasteurized honey four times daily until these skin woes disappear, and they’ll heal 43 percent faster than if you use a prescription cream, say researchers at the Dubai Specialized Medical Center in the United Arab Emirates . Raw honey’s natural enzymes zap inflammation, destroy invading viruses and speed the healing of damaged tissues, say the study authors.
Fight breast pain with flax
In one recent study, adding 3 tablespoons of ground flax to their daily diet eased breast soreness for one in three women within 12 weeks. Scientists credit flax’s phytoestrogens, natural plant compounds that prevent the estrogen spikes that can trigger breast pain. More good news: You don’t have to be a master baker to sneak this healthy seed into your diet. Just sprinkle ground flax on oatmeal, yogurt, applesauce or add it to smoothies and veggie dips.
Cure migraines with coffee
Prone to migraines? Try muscling-up your painkiller with a coffee chaser. Whatever over-the-counter pain med you prefer, researchers at the National Headache Foundation say washing it down with a strong 12- ounce cup of coffee will boost the effectiveness of your medication by 40 percent or more. Experts say caffeine stimulates the stomach lining to absorb painkillers more quickly and more effectively.
Tame leg cramps with tomato juice
At least one in five people regularly struggle with leg cramps. The culprit? Potassium deficiencies, which occur when this mineral is flushed out by diuretics, caffeinated beverages or heavy perspiration during exercise. But sip 10 ounces of potassium-rich tomato juice daily and you'll not only speed your recovery, you'll reduce your risk of painful cramp flare-ups in as little as 10 days, say UCLA researchers.
Sunday, April 7, 2013
Advice for the Newly Diagnosed with GP/DTP
Today, I posted this question to one of the groups I used to be in, "if you could give any advice to the newly diagnosed with GP/DTP, what would it be?" I received some amazing responses, so I thought I would share them in this article. I've tried to cite people as best as I can without giving away personal information. Please note that letters in all caps and bold are links.
I know that when I was finally diagnosed in March of last year, I did two things that really helped me.
The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made THIS entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.
The second thing I did was purchase a journal. I carry my journal around with me everywhere! I do daily entries to log what I eat, when I eat, what time, when gastric spasms start, if I go to the bathroom, when I get sick, how much I got sick, and how I feel. You can give this journal to your doctor for them to read to help them understand what you're going through. If your stomach is like mine, it betrays you when you get to the doctor so that the doctor thinks it's fine. It will also help you distinguish patterns in what you eat and what makes you sick. It might cut down on the amount of testing needed at the doctor's office as well. I've got a TARDIS journal that I write in because I'm a huge Doctor Who fan. A picture of my journal is below.
Also, here is a picture of me during Christmas 2011, before I became ill. The picture below it is the one I took today.
In addition to my own personal advice, I would like to add some more from the wonderful GP Facebook Page that I own/admin. Here is a list compiled from that page.
1. Emily's Stomach. http://www.facebook.com/emilysstomach I have admins who will help you keep motivated and to help to answer any questions you may have. You can PM the page and we will answer your question to the best of our ability. I would also suggest joining a support group. I have a lot of good ones listed in a different article.
2. Be your own advocate (Kirsten). I can't stress this enough! Being your own advocate and do research on the newest treatments for GP. Look up the medication you're prescribed and see if the doctor missed potential side effects like slow motility, nausea, and vomiting. Like I said previously, my GI doctor put me on two medications that did the exact same thing and they slowed my motility WAY down. HERE is a list of medications that make GP worse. **Please consult your doctor and pharmacist about medications as I'm just giving advice, I am not practicing medicine. I'm trying to guide but not take the place of the professionals. Always check with them FIRST.**
3. Believe in yourself (Melissa)! You are your own cheerleader and you CAN do this! I know the road may seem rough sometimes but believe in yourself like we believe in you.
4. Research your condition (Diana)! Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources (Melissa). It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor.
5. Ask Questions (Melissa)! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. Ask about other treatment options for GP like Botox, the Gastric Pacemaker, and Domperidone.
6. GI doctors at the MN Mayo Clinic recommend marijuana, where it's legal, to help with GP (Melony). Be careful though, because even though marijuana might help you eat, it can also slow motility.
7. It's NOT all in your head! I *hate* it when people say this and I was told this nonstop for the past few years. I've lost friends because I kept cancelling on them. They thought I was just being flaky or that I was being anti-social. They also told me, "well, you're ALWAYS sick." Don't let this defeat you. You can help your friends understand by using THE SPOON THEORY. I've used this for a few of my friends and it's helped. I actually had some of them come back and apologize to me. Please read it, it's a great article. They also have a page on Facebook.
8. Don't give up (Tracy)! We all have rough patches that knock us down. However, get right back up and keep fighting! Lean on others for support.
9. You are NEVER alone! Find someone that you can talk and join a support group. My suggestion would be the Stronger Than GP Support Group (http://www.facebook.com/groups/strongerthanGP/) Feel free to add me as a friend. We, the admins and myself, get what you're going through. We're here to help.
10. Be patient (Judy)! While there is no cure for GP/DTP, we have good days and bad days. Sometimes, the bad outweighs the good, but it will pass. If you are having GP attacks, be patient and try some deep breathing exercises. The one that was suggested to me at Mayo is called Diaphragmatic Breathing and an instruction video can be found HERE.
11. Stay hydrated (Judy)! If you let yourself get dehydrated, that opens a whole new can of worms. You'll have terrible headaches, dizziness, fatigue, and maybe worse. Even if you are vomiting, try to suck on ice chips or if you can tolerate it, sip on Pedialyte. Stay away from Gatorade, speaking from personal experience. It's full of sugar that won't sit well on your stomach and then you'll have very interesting colored vomiting. If you don't stay hydrated, you'll end up on an IV in the ER, and that's miserable. Don't torture yourself.
12. Try and take liquid or melt away vitamins (Judy). I am currently dealing wtih a vitamin deficiency because my body is malnourished due to starvation. This just digs you into a hole and once you're there, it's hard to climb back out of it. Try Flinstone's chewables, vitamelts, or liquid vitamins. Stay away from things like gummy vitamins because they'll just sit in your stomach, undigested. I have recipes that are GP friendly, including juicing recipes at PINTEREST.
13. Lean on family (Julie). I know some people have families who aren't supportive because they think that the illness is in your head, still. Don't give up on trying to help them understand. Use the Spoon Theory (mentioned above). This is one of those situations where you will find out who your true friends are. If you lose friends like I did, then they weren't really your friends to begin with and now you have room to make new ones.
14. Praying/religious support (Lyndsay). If you are religious then prayer, faith, and emotional support from church members will help you through this. You can also seek emotional guidance from a priest to help you on your journey.
15. Keep yourself happy (Monica)! This is really important for your well being. If you need ways to cope with GP or distractions from the pain, please check out a previous entry I wrote by clicking HERE. It contains lots of ideas that you can use for inspiration. I like to write, distract myself with my favorite TV shows, and listen to music.
16. Keep looking until you find the right doctor (Nikki). Nikki writes, "don't forget that they work for you!" She's right. Keep searching until you find the doctor who is right for you. Find someone you can trust that will listen to you. I've gone through about ten GI doctors and I'm still having issues finding one that I can trust to listen to me. Don't get discouraged. The right doctors are out there.
17. Take advantage of the good days (Jessica). Good days with GP can be few and far between. So, take every minute of a good day and enjoy it! I've had one or two good days recently, so I milked it for all it was worth!
18. Snap out of Denial. We all go through it. I've eaten foods that I shouldn't have a few times because I really did believe when I was first diagnosed that it was all in my head. After I ate, however, the gastric spasms hit with a vengeance! LaShelle has written out the GP diet that was given to her at Mayo. You can ask her for it.
15. Dealing with Hypoglycemia. I use Shok Blocks because they work quickly and they don't taste that badly. The link to the Shok Blocks on Amazon is HERE.
I hope this article will make your transition to living with GP a little easier. If I may have missed something, please comment below and I will update my entry accordingly. Just remember that it's not in your head. I'm going to conclude with this passage from an unknown author:
I know that when I was finally diagnosed in March of last year, I did two things that really helped me.
The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made THIS entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.
The second thing I did was purchase a journal. I carry my journal around with me everywhere! I do daily entries to log what I eat, when I eat, what time, when gastric spasms start, if I go to the bathroom, when I get sick, how much I got sick, and how I feel. You can give this journal to your doctor for them to read to help them understand what you're going through. If your stomach is like mine, it betrays you when you get to the doctor so that the doctor thinks it's fine. It will also help you distinguish patterns in what you eat and what makes you sick. It might cut down on the amount of testing needed at the doctor's office as well. I've got a TARDIS journal that I write in because I'm a huge Doctor Who fan. A picture of my journal is below.
Also, here is a picture of me during Christmas 2011, before I became ill. The picture below it is the one I took today.
In addition to my own personal advice, I would like to add some more from the wonderful GP Facebook Page that I own/admin. Here is a list compiled from that page.
1. Emily's Stomach. http://www.facebook.com/emilysstomach I have admins who will help you keep motivated and to help to answer any questions you may have. You can PM the page and we will answer your question to the best of our ability. I would also suggest joining a support group. I have a lot of good ones listed in a different article.
2. Be your own advocate (Kirsten). I can't stress this enough! Being your own advocate and do research on the newest treatments for GP. Look up the medication you're prescribed and see if the doctor missed potential side effects like slow motility, nausea, and vomiting. Like I said previously, my GI doctor put me on two medications that did the exact same thing and they slowed my motility WAY down. HERE is a list of medications that make GP worse. **Please consult your doctor and pharmacist about medications as I'm just giving advice, I am not practicing medicine. I'm trying to guide but not take the place of the professionals. Always check with them FIRST.**
3. Believe in yourself (Melissa)! You are your own cheerleader and you CAN do this! I know the road may seem rough sometimes but believe in yourself like we believe in you.
4. Research your condition (Diana)! Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources (Melissa). It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor.
5. Ask Questions (Melissa)! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. Ask about other treatment options for GP like Botox, the Gastric Pacemaker, and Domperidone.
6. GI doctors at the MN Mayo Clinic recommend marijuana, where it's legal, to help with GP (Melony). Be careful though, because even though marijuana might help you eat, it can also slow motility.
7. It's NOT all in your head! I *hate* it when people say this and I was told this nonstop for the past few years. I've lost friends because I kept cancelling on them. They thought I was just being flaky or that I was being anti-social. They also told me, "well, you're ALWAYS sick." Don't let this defeat you. You can help your friends understand by using THE SPOON THEORY. I've used this for a few of my friends and it's helped. I actually had some of them come back and apologize to me. Please read it, it's a great article. They also have a page on Facebook.
8. Don't give up (Tracy)! We all have rough patches that knock us down. However, get right back up and keep fighting! Lean on others for support.
9. You are NEVER alone! Find someone that you can talk and join a support group. My suggestion would be the Stronger Than GP Support Group (http://www.facebook.com/groups/strongerthanGP/) Feel free to add me as a friend. We, the admins and myself, get what you're going through. We're here to help.
10. Be patient (Judy)! While there is no cure for GP/DTP, we have good days and bad days. Sometimes, the bad outweighs the good, but it will pass. If you are having GP attacks, be patient and try some deep breathing exercises. The one that was suggested to me at Mayo is called Diaphragmatic Breathing and an instruction video can be found HERE.
11. Stay hydrated (Judy)! If you let yourself get dehydrated, that opens a whole new can of worms. You'll have terrible headaches, dizziness, fatigue, and maybe worse. Even if you are vomiting, try to suck on ice chips or if you can tolerate it, sip on Pedialyte. Stay away from Gatorade, speaking from personal experience. It's full of sugar that won't sit well on your stomach and then you'll have very interesting colored vomiting. If you don't stay hydrated, you'll end up on an IV in the ER, and that's miserable. Don't torture yourself.
12. Try and take liquid or melt away vitamins (Judy). I am currently dealing wtih a vitamin deficiency because my body is malnourished due to starvation. This just digs you into a hole and once you're there, it's hard to climb back out of it. Try Flinstone's chewables, vitamelts, or liquid vitamins. Stay away from things like gummy vitamins because they'll just sit in your stomach, undigested. I have recipes that are GP friendly, including juicing recipes at PINTEREST.
13. Lean on family (Julie). I know some people have families who aren't supportive because they think that the illness is in your head, still. Don't give up on trying to help them understand. Use the Spoon Theory (mentioned above). This is one of those situations where you will find out who your true friends are. If you lose friends like I did, then they weren't really your friends to begin with and now you have room to make new ones.
14. Praying/religious support (Lyndsay). If you are religious then prayer, faith, and emotional support from church members will help you through this. You can also seek emotional guidance from a priest to help you on your journey.
15. Keep yourself happy (Monica)! This is really important for your well being. If you need ways to cope with GP or distractions from the pain, please check out a previous entry I wrote by clicking HERE. It contains lots of ideas that you can use for inspiration. I like to write, distract myself with my favorite TV shows, and listen to music.
16. Keep looking until you find the right doctor (Nikki). Nikki writes, "don't forget that they work for you!" She's right. Keep searching until you find the doctor who is right for you. Find someone you can trust that will listen to you. I've gone through about ten GI doctors and I'm still having issues finding one that I can trust to listen to me. Don't get discouraged. The right doctors are out there.
17. Take advantage of the good days (Jessica). Good days with GP can be few and far between. So, take every minute of a good day and enjoy it! I've had one or two good days recently, so I milked it for all it was worth!
18. Snap out of Denial. We all go through it. I've eaten foods that I shouldn't have a few times because I really did believe when I was first diagnosed that it was all in my head. After I ate, however, the gastric spasms hit with a vengeance! LaShelle has written out the GP diet that was given to her at Mayo. You can ask her for it.
15. Dealing with Hypoglycemia. I use Shok Blocks because they work quickly and they don't taste that badly. The link to the Shok Blocks on Amazon is HERE.
I hope this article will make your transition to living with GP a little easier. If I may have missed something, please comment below and I will update my entry accordingly. Just remember that it's not in your head. I'm going to conclude with this passage from an unknown author:
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through the final good-bye.
-Author Unknown
Friday, April 5, 2013
Clinical Trial to Test Efficiency of IV Hemin for Gastroparesis
Clinical Trial to Test Efficiency of IV Hemin for Gastroparesis
Gastroparesis is a syndrome marked by slow gastric emptying and symptoms such as nausea, vomiting, bloating, early fullness and abdominal pain. Although long associated with type 1 diabetes and now, increasingly, with type 2, the cause in many cases remains unknown.
But gastroenterologist Gianrico Farrugia, M.D., stresses that in the last few years, scientists at Mayo Clinic and elsewhere have made marked progress in understanding the pathological mechanisms underlying the disorder. Much of the current research focuses on the interstitial cells of Cajal (ICC), which are needed for normal stomach emptying.
"The ICC act as intestinal pacemakers for smooth muscle function," he says. ''They also amplify neuronal signals, act as mechanosensors and set the smooth muscle membrane potential gradient. Both human and animal models demonstrate loss of these cells in diabetic and idiopathic gastroparesis."
Normal gut function requires a balance between processes that injure ICC and processes that generate and maintain them. In people with diabetic gastroparesis, the balance shifts toward factors that damage ICC, including relative insulinopenia and deficiency of insulin-like growth factor-1 (IGF-1), both of which can cause smooth muscle atrophy.
Dr. Farrugia says a critical factor is oxidative stress resulting from low levels of heme oxygenase-1 (HO-1), an important protector against oxidative injury.
"When the mechanisms that normally counteract oxidative stress are impaired, especially upregulation of heme oxygenase-1, ICC are lost and gastric emptying is delayed. In mouse models, restoring HO-1 prevents and even reverses these cellular changes and restores normal gastric function."
Macrophage switching
In the stomach wall, HO-1 expression occurs in a particular subset of macrophages — CD206-positive M2 macrophages — whose cytoprotective effect on ICC appears related to the production of small amounts of carbon monoxide.
Dr. Farrugia says, "When the upregulation of HO-1 is lost, M2 macrophages are replaced by proinflammatory M1 macrophages. These cells, which do not produce carbon monoxide, are associated with ICC damage and the development of delayed stomach emptying. Thus, the upregulation of HO-1 in M2 macrophages seems critical to the prevention of diabetes-related gastroparesis."
Clinical trials
In mouse studies, hemin, a biological product of red blood cells, has been shown to boost the production of HO-1, thereby reducing oxidative stress, allowing repair of the ICC network and normalizing gastric function. Now, Dr. Farrugia and colleague Adil E. Bharucha, MBBS, M.D., are recruiting patients for the first randomized controlled clinical trial to determine whether intravenous hemin therapy is equally beneficial for people with gastroparesis.
"The hope is that this clinical trial may lead to an effective medication for gastroparesis — one that doesn't just manage symptoms as prokinetics do, but that actually targets the cause of the disease."
The need for better treatments is especially critical now, Dr. Farrugia says, because the incidence of gastroparesis is increasing. The number of hospitalizations for the disorder grew by nearly 158 percent from 1995 to 2004. "The vast majority of patients are young women of childbearing age. This disease causes tremendous disruption in patients' lives and in the lives of their families, and none of the treatments we have are ideal."
Link to the article can be found HERE.
Gastroparesis is a syndrome marked by slow gastric emptying and symptoms such as nausea, vomiting, bloating, early fullness and abdominal pain. Although long associated with type 1 diabetes and now, increasingly, with type 2, the cause in many cases remains unknown.
But gastroenterologist Gianrico Farrugia, M.D., stresses that in the last few years, scientists at Mayo Clinic and elsewhere have made marked progress in understanding the pathological mechanisms underlying the disorder. Much of the current research focuses on the interstitial cells of Cajal (ICC), which are needed for normal stomach emptying.
"The ICC act as intestinal pacemakers for smooth muscle function," he says. ''They also amplify neuronal signals, act as mechanosensors and set the smooth muscle membrane potential gradient. Both human and animal models demonstrate loss of these cells in diabetic and idiopathic gastroparesis."
Normal gut function requires a balance between processes that injure ICC and processes that generate and maintain them. In people with diabetic gastroparesis, the balance shifts toward factors that damage ICC, including relative insulinopenia and deficiency of insulin-like growth factor-1 (IGF-1), both of which can cause smooth muscle atrophy.
Dr. Farrugia says a critical factor is oxidative stress resulting from low levels of heme oxygenase-1 (HO-1), an important protector against oxidative injury.
"When the mechanisms that normally counteract oxidative stress are impaired, especially upregulation of heme oxygenase-1, ICC are lost and gastric emptying is delayed. In mouse models, restoring HO-1 prevents and even reverses these cellular changes and restores normal gastric function."
Macrophage switching
In the stomach wall, HO-1 expression occurs in a particular subset of macrophages — CD206-positive M2 macrophages — whose cytoprotective effect on ICC appears related to the production of small amounts of carbon monoxide.
Dr. Farrugia says, "When the upregulation of HO-1 is lost, M2 macrophages are replaced by proinflammatory M1 macrophages. These cells, which do not produce carbon monoxide, are associated with ICC damage and the development of delayed stomach emptying. Thus, the upregulation of HO-1 in M2 macrophages seems critical to the prevention of diabetes-related gastroparesis."
Clinical trials
In mouse studies, hemin, a biological product of red blood cells, has been shown to boost the production of HO-1, thereby reducing oxidative stress, allowing repair of the ICC network and normalizing gastric function. Now, Dr. Farrugia and colleague Adil E. Bharucha, MBBS, M.D., are recruiting patients for the first randomized controlled clinical trial to determine whether intravenous hemin therapy is equally beneficial for people with gastroparesis.
"The hope is that this clinical trial may lead to an effective medication for gastroparesis — one that doesn't just manage symptoms as prokinetics do, but that actually targets the cause of the disease."
The need for better treatments is especially critical now, Dr. Farrugia says, because the incidence of gastroparesis is increasing. The number of hospitalizations for the disorder grew by nearly 158 percent from 1995 to 2004. "The vast majority of patients are young women of childbearing age. This disease causes tremendous disruption in patients' lives and in the lives of their families, and none of the treatments we have are ideal."
Link to the article can be found HERE.
How to Cope with GP/DTP Pain - Emotionally and Physically
This is a question that I've been asked a lot. I have been doubled over in pain, with no relief in sight. So, how do I cope and what do I do to make the pain easier to handle? I have compiled a list from the members on the GASTROPARESIS FACEBOOK PAGE on how to deal with the emotional and physical pain of dealing with Gastroparesis/DTP.
For the Emotional Pain:
1. Smash Journals (recommended by LaShelle & Melony) - It's kind of like scrapbooking. HERE is a video to help you make your own Smash Journal. Also, HERE is a link to Pinterest for ideas on Smash Journals.
2. Facebook (recommended by Melony) - just writing about your experiences will help in support groups/pages.
3. Writing Poetry (recommended by Melony) - getting your feelings out in the form of writing helps.
4. Pets (recommended by Lora & Sara) - pets are great distractions! Walking your dog or playing with your cat will help take your mind off of things. Lora writes, "it is fairly simple to get a favored pet established as a 'emotional support' animal, thus making it possible to take the pet with you EVERYWHERE (without additional fees when traveling!) That would help those in hospitals, housing issues, travel, etc. There are no actual requirements for training, just need a doctor to fill out the proper paperwork for a certificate. Here's a WEBSITE with a little info on the subject."
5. Drawing (recommended by Sara) - drawing helps to channel your emotions into something positive.
6. Watching Videos (recommended by Sara) - whether you're watching videos on Youtube, Hulu, Netflix, or Amazon, escaping into someone else's world for a while will help you to cope with having GP by distracting you from the pain.
7. Breathing Exercises (recommended by Wendy) - Breathing exercises will help relax you. Diaphragmatic Breathing, according to my Mayo Clinic doctor, will help cut down nausea and vomiting. HERE is a link to breathing exercises for relaxation.
8. Exercising (recommended by Angela) - working out can take your mind off of things as well as giving you an energy boost with adrenaline. You can do anything from yoga to jogging, just be careful.
9. Prayer/Meditation (recommended by Angela & Dominique) - being able to vent your frustrations and to focus on something else will take your mind off of GP/DTP.
10. Reading (recommended by Heather) - reading and escaping into someone else's life/story will help you to overcome some of the pain you're in.
11. Listening to music/singing (recommended by Ariella) - listening to music will channel some of your emotional turmoil into fun. Play Rockband, Guitar Hero, or just do some good ole Karaoke to make yourself feel better.
12. Watching Your Favorite TV Show (recommended by Regina) - "I watch The Talk. Those ladies, I just love, they help me though this stress."
13. Surfing the Net (recommended by Mariella) - Mariella writes, "When I'm having good days I try to keep my mind occupied getting on the computer and catching up on the things I couldn't do while I was down..."
14. Going to Concerts (recommended by Tanya) - Tanya writes, "I also enjoy going to local shows, because I have a lot of friends who are in bands with these genres of music. Being there with my friends & listening to them do their passion always seems to help me cope with the stresses of GP."
15. Art Therapy (recommended by Nico) - "As an expressive medium, art can be used to help clients communicate, overcome stress and explore different aspects of their own personality." More on Art Therapy can be found HERE.
16. Playing Video Games (recommended by Melissa) - Her son plays video games to cope with the stress and pain. This is one of my favorite ways to cope with GP/DTP. I usually put in a zombie game and take out all of my stress on the zombies. It sounds goofy, but playing a first person shooter really helps you channel the stress you are dealing with daily. It really does help.
17. Knitting - Knitting is one of my favorite things to do. It keeps my hands busy and distracts me for a bit. I learned how to knit with the KNIFTY KNITTER. You can buy one on AMAZON or pick one up in the Craft Section of Walmart.
For the Physical Pain:
1. Heating Pad (recommended by Melissa) – The heat from the heating pad will help the gastric spasms to calm down.
2. Sucking on Pickled Ginger (recommended by Ariella) – Ginger has been known to help with stomach issues. It’s an old remedy that helps.
3. Sip on Calming Teas (recommended by Domonique) – Sipping on hot teas can both soothe your burning throat and your stomach. Ginger tea and Peppermint teas are recommended.
4. Long Bath (recommended by LaShelle & Diana) – Diana writes, “I also take long hot baths and read in the tub. it's relaxing and soothing.” You can also add Epsom salt to your bath to help with gastric spasms. Epsom Salt can be found in your pharmacy’s first aid section. LaShelle, the GNE Page Creator, has a tip for those of you who want to take relaxing baths, “I use epsom salt and/or Milk and honey baths (which you can find in packages at Walmart). There are some natural herbal remedies you can try but for right now, there isn't much else that fits our needs.”
5. Keep a Food Diary/Journal - this will help you keep track of when you ate, how much you ate, what time you got sick, etc. A pattern might emerge that will help you better gauge when you should eat and what you should eat.
The MAYO CLINIC writes,
For the Emotional Pain:
1. Smash Journals (recommended by LaShelle & Melony) - It's kind of like scrapbooking. HERE is a video to help you make your own Smash Journal. Also, HERE is a link to Pinterest for ideas on Smash Journals.
2. Facebook (recommended by Melony) - just writing about your experiences will help in support groups/pages.
3. Writing Poetry (recommended by Melony) - getting your feelings out in the form of writing helps.
4. Pets (recommended by Lora & Sara) - pets are great distractions! Walking your dog or playing with your cat will help take your mind off of things. Lora writes, "it is fairly simple to get a favored pet established as a 'emotional support' animal, thus making it possible to take the pet with you EVERYWHERE (without additional fees when traveling!) That would help those in hospitals, housing issues, travel, etc. There are no actual requirements for training, just need a doctor to fill out the proper paperwork for a certificate. Here's a WEBSITE with a little info on the subject."
5. Drawing (recommended by Sara) - drawing helps to channel your emotions into something positive.
6. Watching Videos (recommended by Sara) - whether you're watching videos on Youtube, Hulu, Netflix, or Amazon, escaping into someone else's world for a while will help you to cope with having GP by distracting you from the pain.
7. Breathing Exercises (recommended by Wendy) - Breathing exercises will help relax you. Diaphragmatic Breathing, according to my Mayo Clinic doctor, will help cut down nausea and vomiting. HERE is a link to breathing exercises for relaxation.
8. Exercising (recommended by Angela) - working out can take your mind off of things as well as giving you an energy boost with adrenaline. You can do anything from yoga to jogging, just be careful.
9. Prayer/Meditation (recommended by Angela & Dominique) - being able to vent your frustrations and to focus on something else will take your mind off of GP/DTP.
10. Reading (recommended by Heather) - reading and escaping into someone else's life/story will help you to overcome some of the pain you're in.
11. Listening to music/singing (recommended by Ariella) - listening to music will channel some of your emotional turmoil into fun. Play Rockband, Guitar Hero, or just do some good ole Karaoke to make yourself feel better.
12. Watching Your Favorite TV Show (recommended by Regina) - "I watch The Talk. Those ladies, I just love, they help me though this stress."
13. Surfing the Net (recommended by Mariella) - Mariella writes, "When I'm having good days I try to keep my mind occupied getting on the computer and catching up on the things I couldn't do while I was down..."
14. Going to Concerts (recommended by Tanya) - Tanya writes, "I also enjoy going to local shows, because I have a lot of friends who are in bands with these genres of music. Being there with my friends & listening to them do their passion always seems to help me cope with the stresses of GP."
15. Art Therapy (recommended by Nico) - "As an expressive medium, art can be used to help clients communicate, overcome stress and explore different aspects of their own personality." More on Art Therapy can be found HERE.
16. Playing Video Games (recommended by Melissa) - Her son plays video games to cope with the stress and pain. This is one of my favorite ways to cope with GP/DTP. I usually put in a zombie game and take out all of my stress on the zombies. It sounds goofy, but playing a first person shooter really helps you channel the stress you are dealing with daily. It really does help.
17. Knitting - Knitting is one of my favorite things to do. It keeps my hands busy and distracts me for a bit. I learned how to knit with the KNIFTY KNITTER. You can buy one on AMAZON or pick one up in the Craft Section of Walmart.
For the Physical Pain:
1. Heating Pad (recommended by Melissa) – The heat from the heating pad will help the gastric spasms to calm down.
2. Sucking on Pickled Ginger (recommended by Ariella) – Ginger has been known to help with stomach issues. It’s an old remedy that helps.
3. Sip on Calming Teas (recommended by Domonique) – Sipping on hot teas can both soothe your burning throat and your stomach. Ginger tea and Peppermint teas are recommended.
4. Long Bath (recommended by LaShelle & Diana) – Diana writes, “I also take long hot baths and read in the tub. it's relaxing and soothing.” You can also add Epsom salt to your bath to help with gastric spasms. Epsom Salt can be found in your pharmacy’s first aid section. LaShelle, the GNE Page Creator, has a tip for those of you who want to take relaxing baths, “I use epsom salt and/or Milk and honey baths (which you can find in packages at Walmart). There are some natural herbal remedies you can try but for right now, there isn't much else that fits our needs.”
5. Keep a Food Diary/Journal - this will help you keep track of when you ate, how much you ate, what time you got sick, etc. A pattern might emerge that will help you better gauge when you should eat and what you should eat.
The MAYO CLINIC writes,
“Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes. Beyond this, other gastroparesis treatments may include: Changes to your diet Your doctor may refer you to a dietitian who can work with you to find foods that are easier for you to digest, so that you're more likely to get enough calories and nutrients from the food you eat. A dietitian might suggest that you try to: Eat smaller meals more frequently. Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables. Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet. Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars. If liquids are easier for you to ingest, try soups and pureed foods. Drink water throughout each meal. Try gentle exercise after you eat, such as going for a walk. Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine. Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method. Medications Medications to treat gastroparesis may include: Medications to control nausea and vomiting. Anti-emetic medications include prochlorperazine (Compro), diphenhydramine (Benadryl, Unisom) and lorazepam (Ativan). Medications to stimulate the stomach muscles. These medications include metoclopramide (Reglan) and erythromycin. There is a risk of serious side effects with these medications, so discuss the benefits and risks with your doctor. Surgery If treatment doesn't help control your nausea, vomiting or malnutrition, you may consider gastroparesis surgery. During surgery, the lower part of the stomach may be stapled or bypassed to help improve stomach emptying. Experimental treatments Researchers are working on new ways of treating gastroparesis, such as: Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment. Implanting an electrical device to control the stomach muscles. Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.”">Mayo Clinic writes, “Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes. Beyond this, other gastroparesis treatments may include:
Changes to your diet
Your doctor may refer you to a dietitian who can work with you to find foods that are easier for you to digest, so that you're more likely to get enough calories and nutrients from the food you eat. A dietitian might suggest that you try to:
Eat smaller meals more frequently.
Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables.
Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet.
Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars.
If liquids are easier for you to ingest, try soups and pureed foods.
Drink water throughout each meal.
Try gentle exercise after you eat, such as going for a walk.
Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine.
Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method.
Medications
Medications to treat gastroparesis may include:
Medications to control nausea and vomiting. Anti-emetic medications include prochlorperazine (Compro), diphenhydramine (Benadryl, Unisom) and lorazepam (Ativan).
Medications to stimulate the stomach muscles. These medications include metoclopramide (Reglan) and erythromycin. There is a risk of serious side effects with these medications, so discuss the benefits and risks with your doctor.
Surgery
If treatment doesn't help control your nausea, vomiting or malnutrition, you may consider gastroparesis surgery. During surgery, the lower part of the stomach may be stapled or bypassed to help improve stomach emptying.
Experimental treatments
Researchers are working on new ways of treating gastroparesis, such as:
Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.
Implanting an electrical device to control the stomach muscles. Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.”
Tuesday, April 2, 2013
Financial Assistance Ideas
Several people wrote in to weigh in on financial assistance ideas. If you have additional ideas, please leave a comment on this entry and I will be glad to update!
Here is what we have compiled:
1. Medicaid (source varies by state)
2. Medicare (source varies by state)
3. Food Stamps (source varies by state)
4. Disability (source varies by state)
5. WOMEN'S HEALTH (recommended by Teresa) - offers award-winning comprehensive websites that provide reliable, accurate, commercial-free information on the health of women.
6. SSI (source varies by state)
7. NEEDYMEDS.ORG (recommended by Carrie) - for help with cheaper drugs, low cost clinics, low cost cat scans/MRIs.
8. RX OUTREACH (recommended by Carrie) - list of medicines to help people with costs regardless of insurance, just based on income.
9. Negotiating the contract rate with insurance (recommended by Carrie) - insurance companies have a special, contracted rate with certain hospitals. You can usually negotiate a 15-25% payoff amount.
10. "OBAMACARE" (recommended by Rebecca) - new rules on pre-exisiting conditions.
11. VERMONT CHRONIC CARE INITIATIVE (recommended by Katie) - VCCI focuses on the whole person. Registered nurses and medical social workers encourage healthy behaviors and help with related issues such as housing, food security, and transportation to medical appointments. They help beneficiaries talk with their health care providers and may meet with both to develop and support a plan of care.
12. Your Community (recommended by Jen) - "our community stepped up and helped us. They donated enough $$ and supplies to get us through a year of out of pocket medical expenses...you can do fundraisers, benefits."
13. The Health Department (recommended by Tammi) - your local health department prices based on a sliding scale of income. They may be able to do free blood work and help you until you're able to get on your feet.
14. DISABILITY TAX CREDIT IN CANADA (recommended by Alain) - in Ontario and Canada there are a lot of programs for disability. The first step if you are in Canada is to get your doctor to evaluate you so that you can obtain a certificate of disability. This well help you and your family get a tax credit.
15. MODEST NEEDS (recommended by Audra) - Modest Needs is a registered charity that promotes the self-sufficiency of low-income workers by helping them to afford short-term, emergency expenses.
16. Local Churches (recommended by Margaret) - Check with churches too. They may have resources to help you or might be able to refer you. Many churches have food pantries and might be able to help assist you short-term.
17. PATIENT ADVOCATE FOUNDATION (recommended by Debra) - The fund will assist patients suffering from Multiple Myeloma with their co-pay needs during treatment. These funds will be made available to Multiple Myeloma patients who are insured and qualify both medically and financially.
18. Drug Manufacturers (recommended by Debra) - try calling them to see if you can get your prescriptions at a discounted rate or see if maybe you could get them for free with coupons.
19. Utility Companies (recommended by Debra) - try calling your utility companies for extra help with bills while you're applying for assistance.
20. GASTROPARESIS AND ME (recommended by Karen) - soon, this nonprofit organization will be able to help those who may need financial assistance.
21. WALMART - places like Walmart and Kroger have discount prescription programs. You can get most generics for $4.
22. HOPE AIR IN CANADA (recommended by Corry) - Since 1986, Hope Air has been arranging free flights to get financially-disadvantaged Canadians to the healthcare they need. Hope Air is the only registered, national charity that provides free flights to people who cannot afford the cost of an airline ticket to get to medical expertise or specialized medical technologies that usually exist only in larger urban centers. Hope Air is unique among Canadian charities in what we do. And we are proud to provide all flights to our Clients completely free of charge: no cost is transferred to Clients.
23. GO FUND ME (recommended by Ariella) - A personal way to collect online donations from organizations, friends, and family in order to receive help with medical expenses.
24. GIVE FORWARD (recommended by Garry) - GiveForward's online fundraising pages empower friends and family to send love and financial support to patients navigating a medical crisis. Start a GiveForward page today to ease the burden of your loved one's out-of-pocket medical bills.
25. CARING BRIDGE (recommended by Garry) - An online space where you can connect, share news, and receive support. It’s your very own health social network, coming together on your personalized website. And thanks to those who donate, they are available 24/7 to anyone, anywhere, at no cost.
26. Pets (recommended by Lora) - "It is fairly simple to get a favored pet established as a 'emotional support' animal, thus making it possible to take the pet with you EVERYWHERE (without additional fees when traveling!) That would help those in hospitals, housing issues, travel, etc. There are no actual requirements for training, just need a doctor to fill out the proper paperwork for a certificate. Here's a WEBSITE with a little info on the subject.
From the book, "EVERY DOG HAS A GIFT: TRUE STORIES OF DOGS WHO BRING HOPE & HEALING INTO OUR LIVES" BY RACHEL MCPHERSON, Founder and Executive Director of the Good Dod Foundation Link here: https://www.amazon.com/Every-Dog-Has-Gift-Stories/dp/1585427950/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=1504704126&sr=8-1,
27. GOOD RX (recommended by Carrie) - Compare drug prices at over 70,000 pharmacies, and discover free coupons and savings tips. Even if you have insurance or Medicare, GoodRx can often find you a better price!"
Here are some other ways in order to cover your healthcare costs, which I'm updating with what I have been sent and what I have researched,
1. MENTAL HEALH AMERICA. Their website states, "
The ongoing cost of prescription medications can be a challenge, especially if you are taking more than one prescribed medication. Some pharmaceutical companies offer prescription assistance programs to individuals and families with financial needs. These programs typically require a doctor's consent and proof of your financial status. They may also require that you have either no health insurance or no prescription drug benefit through your health insurance. In addition, there are county, state, and national prescription programs for which you may qualify and special drug discount cards offered by some pharmaceutical companies." They list resources already found in this article, like GOODRX, but also give you several options I did not include above.
2. DRUGS.COM. This is an online, discount drug card. Just present this to your pharmacist and they will be able to process it like insurance, but keep in mind it is not, in fact, insurance. Their website states, "You'll save on most, but not all, prescriptions. The card is good for prescription drugs, over-the-counter medicines and medical supplies if written on a prescription blank, and pet prescription medicines purchased at a pharmacy. The card is not valid in combination with other insurance plans, including Medicare, Medicaid or any state or federal prescription insurance. The card can be used only if you decide not to use your government-sponsored drug plan for your purchases." It claims to, "Save up to 80%. Never expires. Use the card as often as needed. Share the card with friends and family. Free, no fees or registration. Use at over 65,000 pharmacies nationwide including all major chains."
Getting Started
(Created by Melissa V** & Emily S. - and I will go through them and put the descriptions down later)
One good place to begin when searching for information regarding gastroparesis is with Emily Randolph Scherer’s blog: http://www.emilysstomach.com/. This blog is an excellent source – full of great advice/tips about all aspects of living with gastroparesis. The following are additional resources that might be helpful when looking for more specific information.
Gastroparesis Explained
http://www.emilysstomach.com/2013/04/resources-for-help-to-explain-gpdtp.html
http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/gastroparesis/Pages/facts.aspx#1
http://livingwithgp.com/info/
http://livingwithgastroparesis.com/
Gastroparesis Diets
http://gicare.com/diets/gastroparesis-diet/
https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf (FODMAPS)
Digestive Disorders Organizations
http://www.agmd-gimotility.org/
http://www.iffgd.org/
http://www.dha.org
http://www.g-pact.org/
http://www.ddnc.org/Home_Page.html
Pain
http://patients.about.com/od/painkillerlegalandsafety/a/Pain-Drugs-Drug-Seekers-Your-Doctor-And-The-Law.htm
https://www.facebook.com/pages/Chronic-Pain-Management-Program/138419476204932
http://theacpa.org/
http://www.emilysstomach.com/2016/02/to-loved-ones-of-person-living-with.html
http://www.emilysstomach.com/2013/04/painkillers-in-your-kitchen-alternative.html
Weight & Malnutrition
http://www.huffingtonpost.com/dr-mark-hyman/malnutrition-obesity_b_1324760.html
http://www.webmd.com/diet/ss/slideshow-weight-gain-shockers
http://www.emilysstomach.com/2013/06/the-impact-of-vitamin-deficiencies.html
http://www.emilysstomach.com/2013/06/information-about-malnutrition.html
http://www.emilysstomach.com/2014/01/the-gastroparesis-diet.html
www.pinterest.com/chikensrule
http://www.emilysstomach.com/2014/11/handling-holidays-with-chronic-illness.html
http://www.emilysstomach.com/2015/04/gastroparesis-vs-eating-disorders.html
http://www.emilysstomach.com/2018/04/gastroparesis-and-eating-disorders-part.html
Educational Resources to Help You and Your Friends/Family Understand Gastroparesis
http://www.emilysstomach.com/2013/06/poop-what-different-colors-and-smells.html
http://www.emilysstomach.com/2013/07/gastroparesis-patients-vs-drug-seekers.html
http://www.emilysstomach.com/2015/02/frequently-asked-questions-regarding.html
http://www.emilysstomach.com/2016/01/a-letter-from-gper-to-friendfamily.html
http://www.emilysstomach.com/2016/07/information-about-vagus-nerve.html
http://www.emilysstomach.com/2017/06/pyloric-stent-pyloroplasty.html
http://www.emilysstomach.com/2017/09/the-brain-in-your-gut.html
http://www.emilysstomach.com/2017/11/information-to-help-newly-diagnosed-and.html
http://www.emilysstomach.com/2018/04/gastroparesis-different-ways-it-effects.html
http://www.emilysstomach.com/2018/06/a-collection-of-gastroparesis-studies.html
Grieving Process with Gastroparesis
http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html
http://www.emilysstomach.com/2018/04/socializing-with-invisible-illness.html
Feeding Tubes
https://www.facebook.com/APFED
http://www.digestivedistress.com/tube-feeding-info
https://www.facebook.com/ThriveRx/timeline
Disability
http://www.disabilitysecrets.com/resources/disability/getting-social-security-disability-benefits-se
http://www.disabilitysecrets.com/topics/social-security-denials-and-appeals.htm
http://www.disabilitysecrets.com/tip8.html
Coping
http://www.emilysstomach.com/2013/06/how-to-stay-positive-especially-in.html
http://www.emilysstomach.com/2013/07/how-to-stay-motivated.html
http://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear
http://www.a-spiritual-journey-of-healing.com/7-stages-of-grief.html
http://www.aboutkidsgi.org/site/living-with/talking-about-gi-disorders/back-to-school
http://invisibleillnessweek.com/2012/08/14/you-look-so-good/
http://www.huffingtonpost.com/lottie-v-ryan/living-with-chronic-illness_b_5878410.html
http://gastroparesisclinic.org/index.php
http://www.faithgateway.com/depression-fighting-dragons/?utm_source=fgwomen&utm_medium=email&utm_campaign=fgwomen20141211&spMailingID=47579586&spUserID=MjkwMzMyOTA1NzES1&spJobID=581738107&spReportId=NTgxNzM4MTA3S0#.VJ1egl2AAW
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
http://www.dcor.state.ga.us/pdf/Dealing_with_Holiday_Stress.pdf
Common Problems/Conditions
http://www.emilysstomach.com/2014/11/how-to-feel-sexyhave-sex-with.html
http://optimumhealthvitamins.com/OptiBlog/tabid/105/entryid/173/Default.aspx
https://www.yahoo.com/health/how-your-body-signals-that-youre-vitamin-deficient-100516369838.html
http://www.greensnoteasy.com/2013/06/domperidone-reglan-and-gastroparesis.html
http://www.med-health.net/Feels-Like-Something-Is-Stuck-in-My-Throat.html
http://www.puristat.com/bloating/sibo.aspx
http://www.youtube.com/watch?v=H0jaF6Rnuv4&feature=youtu.be
http://www.webmd.com/digestive-disorders/tc/difficulty-swallowing-dysphagia-overview
Links to Various Gastroparesis-Related Resources
(Created by Melissa V.and Emily Scherer)
There are a lot of ways to find help you financially cope with the burden of deductibles, high out of pocket costs, and even if you do not have insurance, there are ways to help you afford your healthcare: http://www.emilysstomach.com/2013/04/financial-assistance-ideas.html
Help with Medical/Prescription Costs
http://www.mentalhealthamerica.net/prescription-assistance (*Start Here*)
http://www.needymeds.org/index.htm
http://rxoutreach.org/
https://www.pparx.org/prescription_assistance_programs/savings_cards
http://www.simplesavingscard.com/HowItWorks
http://www.drugs.com/discount-card/
http://www.ssa.gov/medicare/prescriptionhelp/
http://www.needhelppayingbills.com/html/help_with_medical_bills.html
http://www.gskforyou.com/index.html
Help with Nutritional Supplements & Equipment
https://www.rxhope.com/PAP/info/PAPList.aspx?programid=10067&fieldType=programid
http://www.oley.org/equipexchange.html
http://www.g-pact.org/supplydepot.html
http://www.oley.org/lifeline/ndtubetalk.html
http://www.feedingtubeawareness.org/resources.html
https://www.facebook.com/groups/183532715060740/
https://www.facebook.com/groups/thekindermedsuppliesboard/
https://www.facebook.com/groups/MedicalSuppliesBST/
https://www.facebook.com/groups/MedicalNeedsExchange/
http://www.rmmor.org/nonprofits.htm
**Giving credit where credit is due. These were made for the groups I owned and ran at the time. Since it's wonderfully put together, andI just found it going through group files, that I had to share it. I wanted this to benefit all, and did want want to just delete it. If I did that, that would make you guys he victims andy you'd suffer, because I was being petty. I did NOT want to do that.
Here is what we have compiled:
1. Medicaid (source varies by state)
2. Medicare (source varies by state)
3. Food Stamps (source varies by state)
4. Disability (source varies by state)
5. WOMEN'S HEALTH (recommended by Teresa) - offers award-winning comprehensive websites that provide reliable, accurate, commercial-free information on the health of women.
6. SSI (source varies by state)
7. NEEDYMEDS.ORG (recommended by Carrie) - for help with cheaper drugs, low cost clinics, low cost cat scans/MRIs.
8. RX OUTREACH (recommended by Carrie) - list of medicines to help people with costs regardless of insurance, just based on income.
9. Negotiating the contract rate with insurance (recommended by Carrie) - insurance companies have a special, contracted rate with certain hospitals. You can usually negotiate a 15-25% payoff amount.
10. "OBAMACARE" (recommended by Rebecca) - new rules on pre-exisiting conditions.
11. VERMONT CHRONIC CARE INITIATIVE (recommended by Katie) - VCCI focuses on the whole person. Registered nurses and medical social workers encourage healthy behaviors and help with related issues such as housing, food security, and transportation to medical appointments. They help beneficiaries talk with their health care providers and may meet with both to develop and support a plan of care.
12. Your Community (recommended by Jen) - "our community stepped up and helped us. They donated enough $$ and supplies to get us through a year of out of pocket medical expenses...you can do fundraisers, benefits."
13. The Health Department (recommended by Tammi) - your local health department prices based on a sliding scale of income. They may be able to do free blood work and help you until you're able to get on your feet.
14. DISABILITY TAX CREDIT IN CANADA (recommended by Alain) - in Ontario and Canada there are a lot of programs for disability. The first step if you are in Canada is to get your doctor to evaluate you so that you can obtain a certificate of disability. This well help you and your family get a tax credit.
15. MODEST NEEDS (recommended by Audra) - Modest Needs is a registered charity that promotes the self-sufficiency of low-income workers by helping them to afford short-term, emergency expenses.
16. Local Churches (recommended by Margaret) - Check with churches too. They may have resources to help you or might be able to refer you. Many churches have food pantries and might be able to help assist you short-term.
17. PATIENT ADVOCATE FOUNDATION (recommended by Debra) - The fund will assist patients suffering from Multiple Myeloma with their co-pay needs during treatment. These funds will be made available to Multiple Myeloma patients who are insured and qualify both medically and financially.
18. Drug Manufacturers (recommended by Debra) - try calling them to see if you can get your prescriptions at a discounted rate or see if maybe you could get them for free with coupons.
19. Utility Companies (recommended by Debra) - try calling your utility companies for extra help with bills while you're applying for assistance.
20. GASTROPARESIS AND ME (recommended by Karen) - soon, this nonprofit organization will be able to help those who may need financial assistance.
21. WALMART - places like Walmart and Kroger have discount prescription programs. You can get most generics for $4.
22. HOPE AIR IN CANADA (recommended by Corry) - Since 1986, Hope Air has been arranging free flights to get financially-disadvantaged Canadians to the healthcare they need. Hope Air is the only registered, national charity that provides free flights to people who cannot afford the cost of an airline ticket to get to medical expertise or specialized medical technologies that usually exist only in larger urban centers. Hope Air is unique among Canadian charities in what we do. And we are proud to provide all flights to our Clients completely free of charge: no cost is transferred to Clients.
23. GO FUND ME (recommended by Ariella) - A personal way to collect online donations from organizations, friends, and family in order to receive help with medical expenses.
24. GIVE FORWARD (recommended by Garry) - GiveForward's online fundraising pages empower friends and family to send love and financial support to patients navigating a medical crisis. Start a GiveForward page today to ease the burden of your loved one's out-of-pocket medical bills.
25. CARING BRIDGE (recommended by Garry) - An online space where you can connect, share news, and receive support. It’s your very own health social network, coming together on your personalized website. And thanks to those who donate, they are available 24/7 to anyone, anywhere, at no cost.
26. Pets (recommended by Lora) - "It is fairly simple to get a favored pet established as a 'emotional support' animal, thus making it possible to take the pet with you EVERYWHERE (without additional fees when traveling!) That would help those in hospitals, housing issues, travel, etc. There are no actual requirements for training, just need a doctor to fill out the proper paperwork for a certificate. Here's a WEBSITE with a little info on the subject.
From the book, "EVERY DOG HAS A GIFT: TRUE STORIES OF DOGS WHO BRING HOPE & HEALING INTO OUR LIVES" BY RACHEL MCPHERSON, Founder and Executive Director of the Good Dod Foundation Link here: https://www.amazon.com/Every-Dog-Has-Gift-Stories/dp/1585427950/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=1504704126&sr=8-1,
"The Americans with Disabilities Act defines service dogs as any guide dog, signal dog, or other animal who is trained to provide assistance to an individual with a disability. For example, some dogs are trained to pull wheelchairs, others are taught to alert to the sounds of the telephone, oven timers, alarm clocks, smoke alarms, and even a baby’s cry. Service dogs are not considered pets. People frequently ask me how their dog can become a therapy dog. There is a common misconception that therapy dogs need to be a certain breed, or raised to be therapy dogs from a very young age. On the contrary, therapy dogs come in all breeds and sizes!
A therapy dog can provide healing to his or her companion or family, as well as hundreds of other people in a therapeutic setting – whether a hospital, a school or a retirement home. The remarkable work of therapy dogs (as well as service dogs and household pets) inspired me to write Every Dog Has a Gift. Likewise, I hope that readers will be inspired by the amazing stories in this book to do some good work with their own companion dog!
If you’re interested in getting your dog certified, here are some tips to get you started:
Find a reputable therapy-dog organization. If you’re located on the East coast, visit TheGoodDogFoundation.org. If not, find an animal-assisted therapy organization in your state that offers a training program. There are a number of organizations mentioned in the book, and many can be found online as well.
Undergo an evaluation and a training course. A good animal-assisted therapy organization should offer a thorough evaluation, training program, basic obedience training (if necessary) and follow-up. An experienced trainer will evaluate you and your dog as a team and place you in the appropriate courses. Training courses should use positive reinforcement and patient, reward-based methods.
Volunteer! The Good Dog Foundation maintains relationships with hospitals, schools and other facilities where we help schedule and orient therapy teams as they begin their outreach. After certification by a therapy organization, you and your dog can volunteer on your own or, even better, work with that organization to find volunteer opportunities in your area.
Service Dogs vs. Therapy Dogs: What's the Difference?
Unlike therapy dogs, service dogs and their human companions must be allowed access to buildings (including restaurants, libraries, supermarkets, and churches), transportation systems, and other public areas and services. Another difference between therapy and service dogs is that the latter are often picked by breed for certain characteristics.
What It Takes to Be a Service Dog
Service dogs should have all the characteristics of a therapy dog, plus a few others. For example, certain breeds are chosen for specific types of service. In the United States, 60 to 70 percent of all working guide dogs for the blind are Labrador retrievers. Golden retrievers and German shepherds are next in popularity. These dogs are chosen because of their temperament, versatility, size, intelligence, and availability. Guide dogs must be hard workers, large enough to guide people while in harness and small enough to be easily controlled and fit comfortably on public transportation and under restaurant tables.
You may find that some service dogs seem to 'stretch the envelope' when it comes to fitting comfortably in public places. One such dog appears in section one of Every Dog Has a Gift. Hooch is a massive Rottweiler who is a service dog for Daniel. Although Hooch weighs in at more than one hundred pounds, he manages to wrap himself around the pedestal of a cafe table and be as unobtrusive as possible!
Article information found at: http://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/
27. GOOD RX (recommended by Carrie) - Compare drug prices at over 70,000 pharmacies, and discover free coupons and savings tips. Even if you have insurance or Medicare, GoodRx can often find you a better price!"
Here are some other ways in order to cover your healthcare costs, which I'm updating with what I have been sent and what I have researched,
1. MENTAL HEALH AMERICA. Their website states, "
The ongoing cost of prescription medications can be a challenge, especially if you are taking more than one prescribed medication. Some pharmaceutical companies offer prescription assistance programs to individuals and families with financial needs. These programs typically require a doctor's consent and proof of your financial status. They may also require that you have either no health insurance or no prescription drug benefit through your health insurance. In addition, there are county, state, and national prescription programs for which you may qualify and special drug discount cards offered by some pharmaceutical companies." They list resources already found in this article, like GOODRX, but also give you several options I did not include above.
2. DRUGS.COM. This is an online, discount drug card. Just present this to your pharmacist and they will be able to process it like insurance, but keep in mind it is not, in fact, insurance. Their website states, "You'll save on most, but not all, prescriptions. The card is good for prescription drugs, over-the-counter medicines and medical supplies if written on a prescription blank, and pet prescription medicines purchased at a pharmacy. The card is not valid in combination with other insurance plans, including Medicare, Medicaid or any state or federal prescription insurance. The card can be used only if you decide not to use your government-sponsored drug plan for your purchases." It claims to, "Save up to 80%. Never expires. Use the card as often as needed. Share the card with friends and family. Free, no fees or registration. Use at over 65,000 pharmacies nationwide including all major chains."
Getting Started
(Created by Melissa V** & Emily S. - and I will go through them and put the descriptions down later)
One good place to begin when searching for information regarding gastroparesis is with Emily Randolph Scherer’s blog: http://www.emilysstomach.com/. This blog is an excellent source – full of great advice/tips about all aspects of living with gastroparesis. The following are additional resources that might be helpful when looking for more specific information.
Gastroparesis Explained
http://www.emilysstomach.com/2013/04/resources-for-help-to-explain-gpdtp.html
http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/gastroparesis/Pages/facts.aspx#1
http://livingwithgp.com/info/
http://livingwithgastroparesis.com/
Gastroparesis Diets
http://gicare.com/diets/gastroparesis-diet/
https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf (FODMAPS)
Digestive Disorders Organizations
http://www.agmd-gimotility.org/
http://www.iffgd.org/
http://www.dha.org
http://www.g-pact.org/
http://www.ddnc.org/Home_Page.html
Pain
http://patients.about.com/od/painkillerlegalandsafety/a/Pain-Drugs-Drug-Seekers-Your-Doctor-And-The-Law.htm
https://www.facebook.com/pages/Chronic-Pain-Management-Program/138419476204932
http://theacpa.org/
http://www.emilysstomach.com/2016/02/to-loved-ones-of-person-living-with.html
http://www.emilysstomach.com/2013/04/painkillers-in-your-kitchen-alternative.html
Weight & Malnutrition
http://www.huffingtonpost.com/dr-mark-hyman/malnutrition-obesity_b_1324760.html
http://www.webmd.com/diet/ss/slideshow-weight-gain-shockers
http://www.emilysstomach.com/2013/06/the-impact-of-vitamin-deficiencies.html
http://www.emilysstomach.com/2013/06/information-about-malnutrition.html
http://www.emilysstomach.com/2014/01/the-gastroparesis-diet.html
www.pinterest.com/chikensrule
http://www.emilysstomach.com/2014/11/handling-holidays-with-chronic-illness.html
http://www.emilysstomach.com/2015/04/gastroparesis-vs-eating-disorders.html
http://www.emilysstomach.com/2018/04/gastroparesis-and-eating-disorders-part.html
Educational Resources to Help You and Your Friends/Family Understand Gastroparesis
http://www.emilysstomach.com/2013/06/poop-what-different-colors-and-smells.html
http://www.emilysstomach.com/2013/07/gastroparesis-patients-vs-drug-seekers.html
http://www.emilysstomach.com/2015/02/frequently-asked-questions-regarding.html
http://www.emilysstomach.com/2016/01/a-letter-from-gper-to-friendfamily.html
http://www.emilysstomach.com/2016/07/information-about-vagus-nerve.html
http://www.emilysstomach.com/2017/06/pyloric-stent-pyloroplasty.html
http://www.emilysstomach.com/2017/09/the-brain-in-your-gut.html
http://www.emilysstomach.com/2017/11/information-to-help-newly-diagnosed-and.html
http://www.emilysstomach.com/2018/04/gastroparesis-different-ways-it-effects.html
http://www.emilysstomach.com/2018/06/a-collection-of-gastroparesis-studies.html
Grieving Process with Gastroparesis
http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html
http://www.emilysstomach.com/2018/04/socializing-with-invisible-illness.html
Feeding Tubes
https://www.facebook.com/APFED
http://www.digestivedistress.com/tube-feeding-info
https://www.facebook.com/ThriveRx/timeline
Disability
http://www.disabilitysecrets.com/resources/disability/getting-social-security-disability-benefits-se
http://www.disabilitysecrets.com/topics/social-security-denials-and-appeals.htm
http://www.disabilitysecrets.com/tip8.html
Coping
http://www.emilysstomach.com/2013/06/how-to-stay-positive-especially-in.html
http://www.emilysstomach.com/2013/07/how-to-stay-motivated.html
http://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear
http://www.a-spiritual-journey-of-healing.com/7-stages-of-grief.html
http://www.aboutkidsgi.org/site/living-with/talking-about-gi-disorders/back-to-school
http://invisibleillnessweek.com/2012/08/14/you-look-so-good/
http://www.huffingtonpost.com/lottie-v-ryan/living-with-chronic-illness_b_5878410.html
http://gastroparesisclinic.org/index.php
http://www.faithgateway.com/depression-fighting-dragons/?utm_source=fgwomen&utm_medium=email&utm_campaign=fgwomen20141211&spMailingID=47579586&spUserID=MjkwMzMyOTA1NzES1&spJobID=581738107&spReportId=NTgxNzM4MTA3S0#.VJ1egl2AAW
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
http://www.dcor.state.ga.us/pdf/Dealing_with_Holiday_Stress.pdf
Common Problems/Conditions
http://www.emilysstomach.com/2014/11/how-to-feel-sexyhave-sex-with.html
http://optimumhealthvitamins.com/OptiBlog/tabid/105/entryid/173/Default.aspx
https://www.yahoo.com/health/how-your-body-signals-that-youre-vitamin-deficient-100516369838.html
http://www.greensnoteasy.com/2013/06/domperidone-reglan-and-gastroparesis.html
http://www.med-health.net/Feels-Like-Something-Is-Stuck-in-My-Throat.html
http://www.puristat.com/bloating/sibo.aspx
http://www.youtube.com/watch?v=H0jaF6Rnuv4&feature=youtu.be
http://www.webmd.com/digestive-disorders/tc/difficulty-swallowing-dysphagia-overview
Links to Various Gastroparesis-Related Resources
(Created by Melissa V.and Emily Scherer)
There are a lot of ways to find help you financially cope with the burden of deductibles, high out of pocket costs, and even if you do not have insurance, there are ways to help you afford your healthcare: http://www.emilysstomach.com/2013/04/financial-assistance-ideas.html
Help with Medical/Prescription Costs
http://www.mentalhealthamerica.net/prescription-assistance (*Start Here*)
http://www.needymeds.org/index.htm
http://rxoutreach.org/
https://www.pparx.org/prescription_assistance_programs/savings_cards
http://www.simplesavingscard.com/HowItWorks
http://www.drugs.com/discount-card/
http://www.ssa.gov/medicare/prescriptionhelp/
http://www.needhelppayingbills.com/html/help_with_medical_bills.html
http://www.gskforyou.com/index.html
Help with Nutritional Supplements & Equipment
https://www.rxhope.com/PAP/info/PAPList.aspx?programid=10067&fieldType=programid
http://www.oley.org/equipexchange.html
http://www.g-pact.org/supplydepot.html
http://www.oley.org/lifeline/ndtubetalk.html
http://www.feedingtubeawareness.org/resources.html
https://www.facebook.com/groups/183532715060740/
https://www.facebook.com/groups/thekindermedsuppliesboard/
https://www.facebook.com/groups/MedicalSuppliesBST/
https://www.facebook.com/groups/MedicalNeedsExchange/
http://www.rmmor.org/nonprofits.htm
**Giving credit where credit is due. These were made for the groups I owned and ran at the time. Since it's wonderfully put together, andI just found it going through group files, that I had to share it. I wanted this to benefit all, and did want want to just delete it. If I did that, that would make you guys he victims andy you'd suffer, because I was being petty. I did NOT want to do that.
Second Easter with Motility Issues & Vitamin Deficiencies
I just got a call from my doctor a week ago - my vitamin levels are really low and my lipase (liver enzymes) are REALLY high still. I'm basically malnourished, and starving. He said for me to take 800mg of Vitamin D, 1200mg of Vitamin C, and he's going to call in Vitamin B injections for me to take 1ml for 1 week for 4 weeks and then monthly after that.
The issue is that I can't take pills because they usually don't stay down, so my husband bought me dissolvable tablets to take. The problem is that the Vitamin C has such a low dosage that I have to take twenty of the dissolvable tablets to make it work. It's not very efficient.
I just don't know what to do. No one will listen to me when I tell them I'm starving. Just because I'm not 90 pounds yet doesn't mean I'm not malnourished. I can't take pills because they have a hard time staying down. I don't know if those vitamins come in injection form, and overall, I'm just exhausted both mentally and physically. I'm worried about my liver. My enzymes have been really high for over a year and they can't figure out why. The doctors don't seem to be very concerned and it's worrisome. I'm worried that I'm going to get sucked down into a hole of deficiencies and then not be able to claw my way back up. It's hard for me to keep food, or even liquids down right now. When I get into these attack cycles, I can't seem to break them.
Step 1: Find needles for a sub-q injection.
Step 2: Get medication ready.
Step 3: Fill up syringes with 1ml of medication.
Step 4: Injection medication.
I have to repeat this process weekly for another two weeks and then I need to do it monthly for a while. I still need to remember to ask my doctor about other injections since needles don't bother me. I would rather inject the vitamins than try and ingest them. It makes my arm a bit sore but I'd rather have that than violently vomiting later.
Also, it was also my second Easter with motility issues. I managed to cook for my family but I couldn't manage more than two bites of food. It made my family feel bad but honestly, I was just SO happy that I could cook without an issue. I was very thankful for that. I had to sit down for a bit when the stomach spasms started, and my mother could tell when they started, because she said that I became incredibly pale. I felt almost overheated when they started. I took a muscle relaxer and then the spasms became a bit more bearable. I ate a bite or two of potato salad, which I probably shouldn't have.
Today, I feel a bit better but I haven't eaten much in the past few days. I have not been hungry and I am trying to ignore the nausea. I managed to drive today. It was good to leave the house for a bit but I was worried about vomiting on the side of the road again. I manage to make it through driving without an issue but the day isn't over yet. I'm trying to take it easy and take care of myself so that I can go back to Mayo. I need to call the doctor and schedule my next visit.
The issue is that I can't take pills because they usually don't stay down, so my husband bought me dissolvable tablets to take. The problem is that the Vitamin C has such a low dosage that I have to take twenty of the dissolvable tablets to make it work. It's not very efficient.
I just don't know what to do. No one will listen to me when I tell them I'm starving. Just because I'm not 90 pounds yet doesn't mean I'm not malnourished. I can't take pills because they have a hard time staying down. I don't know if those vitamins come in injection form, and overall, I'm just exhausted both mentally and physically. I'm worried about my liver. My enzymes have been really high for over a year and they can't figure out why. The doctors don't seem to be very concerned and it's worrisome. I'm worried that I'm going to get sucked down into a hole of deficiencies and then not be able to claw my way back up. It's hard for me to keep food, or even liquids down right now. When I get into these attack cycles, I can't seem to break them.
Step 1: Find needles for a sub-q injection.
Step 2: Get medication ready.
Step 3: Fill up syringes with 1ml of medication.
Step 4: Injection medication.
I have to repeat this process weekly for another two weeks and then I need to do it monthly for a while. I still need to remember to ask my doctor about other injections since needles don't bother me. I would rather inject the vitamins than try and ingest them. It makes my arm a bit sore but I'd rather have that than violently vomiting later.
Also, it was also my second Easter with motility issues. I managed to cook for my family but I couldn't manage more than two bites of food. It made my family feel bad but honestly, I was just SO happy that I could cook without an issue. I was very thankful for that. I had to sit down for a bit when the stomach spasms started, and my mother could tell when they started, because she said that I became incredibly pale. I felt almost overheated when they started. I took a muscle relaxer and then the spasms became a bit more bearable. I ate a bite or two of potato salad, which I probably shouldn't have.
Today, I feel a bit better but I haven't eaten much in the past few days. I have not been hungry and I am trying to ignore the nausea. I managed to drive today. It was good to leave the house for a bit but I was worried about vomiting on the side of the road again. I manage to make it through driving without an issue but the day isn't over yet. I'm trying to take it easy and take care of myself so that I can go back to Mayo. I need to call the doctor and schedule my next visit.
Saturday, March 23, 2013
Medication List that Makes Gastroparesis/DTP Worse
Jeannie from the GASTROPARESIS Facebook Page contributed to this list.
These are the medications that can make Gastroparesis and DTP worse.
NARCOTICS
Lortab
Norco
Vicodin
Dolophine
Methadose
Morphine
Avinza
Kadian
MS Cotin
Oxycodone
Oxycontin
Percocet
Percodan
Tramadol
Ultram
DOPAMNE AGONISTS
Abilify
Phencyclidine
Quinpirole
Salvinorin A
Apomorphine - Apokyn
Bromocriptine - Parlodel
Cabergoline - Dostinex SR
Ciladopa
Dihydrexidine
Dinapsoline
Doxanthrine
Epicriptine – Similar to Bromocriptine
Lisuride
TRICYCLIC ANTIDEPRESSANTS
Amitriptyline
Amoxapine
Desipramine
Doxepin
Trofranil – Trofranil PM
Maprotiline
Pamelor
Vivactil
Surmontil
Lithium
Zyprexa
CALCIUM CHANNEL BLOCKERS
Amlodipine
Norvasc
Amlodipine & Atorvastatin - Caduet
Amlodipine & Benazepril – Lotrel
Amlodipine & Valsartan – Exforge
Diltiazem – Cardizem, Dilacor, Taztia, Tiazac
Felodipine
Isradipine
Nicardipine – Cardene
Nifedipine – Adalat, Procadia
Nisoldipine – Sular
Verapamil – Calan, Isoptin
Simvastatin – Zocor
Clonidine
Progesterone
I want to add some of my own that the Mayo Doctor told me to stop taking because they do effect motility:
Bentyl (Dicyclomine)
Levsin (Hycosimine)
Zoloft (makes vomiting worse)
Nortriptilyne
Dexilant
My entry about my first visit with the Mayo Clinic is HERE.
So, if you are on any of these drugs, check with your GI doctor and see if there is something else that you can take. Also check the side effects of your medicine to make sure that nothing will make your symptoms worse.
Source can be found HERE.
These are the medications that can make Gastroparesis and DTP worse.
NARCOTICS
Lortab
Norco
Vicodin
Dolophine
Methadose
Morphine
Avinza
Kadian
MS Cotin
Oxycodone
Oxycontin
Percocet
Percodan
Tramadol
Ultram
DOPAMNE AGONISTS
Abilify
Phencyclidine
Quinpirole
Salvinorin A
Apomorphine - Apokyn
Bromocriptine - Parlodel
Cabergoline - Dostinex SR
Ciladopa
Dihydrexidine
Dinapsoline
Doxanthrine
Epicriptine – Similar to Bromocriptine
Lisuride
TRICYCLIC ANTIDEPRESSANTS
Amitriptyline
Amoxapine
Desipramine
Doxepin
Trofranil – Trofranil PM
Maprotiline
Pamelor
Vivactil
Surmontil
Lithium
Zyprexa
CALCIUM CHANNEL BLOCKERS
Amlodipine
Norvasc
Amlodipine & Atorvastatin - Caduet
Amlodipine & Benazepril – Lotrel
Amlodipine & Valsartan – Exforge
Diltiazem – Cardizem, Dilacor, Taztia, Tiazac
Felodipine
Isradipine
Nicardipine – Cardene
Nifedipine – Adalat, Procadia
Nisoldipine – Sular
Verapamil – Calan, Isoptin
Simvastatin – Zocor
Clonidine
Progesterone
I want to add some of my own that the Mayo Doctor told me to stop taking because they do effect motility:
Bentyl (Dicyclomine)
Levsin (Hycosimine)
Zoloft (makes vomiting worse)
Nortriptilyne
Dexilant
My entry about my first visit with the Mayo Clinic is HERE.
So, if you are on any of these drugs, check with your GI doctor and see if there is something else that you can take. Also check the side effects of your medicine to make sure that nothing will make your symptoms worse.
Source can be found HERE.
Thursday, March 21, 2013
Follow Up with my Regular GI Doctor
Here's what's interesting about doctors, they always have conflicting opinions. The GI doctor read the notes of the Mayo Doctor right in front of me and he mentioned to me that he disagreed and didn't think the NISSEN SURGERY would help me at all. He said that I've been on acid reflux medication for years. The only way this stomach surgery would work, in his words,
I trust him and trust his judgement. Instead, he wants me to follow up with Mayo, have some blood work done (because my lipase levels have been really high), and come back to him to talk about what to do next. He suggested a procedure called ESOPHAGEAL MANOMETRY. Basically, it's a procedure that involves a tube going into your nose and into your stomach for 24 hours. It tests the vomiting to determine if it is stomach acid or actual vomit.
However, his opinion seems to be that my lower bowels are paralyzed or have lack of motility, not my stomach itself. I'm starting to think that too - but nothing seems to go down. Everything seems to come back up. However, my belly was really swollen when I saw him today. On the scale it looked like I had gained weight because my stomach is so bloated, it looks like I'm carrying around a watermelon. I haven't eaten hardly anything but I have been drinking a lot of water. He noticed the bloating too because I am usually lighter on the scale and my face has thinned out.
If you look at pictures of me from last year or the year before compared to now, my face has really thinned out. I've lost a pants size.
He called in stronger anti-nausea medicine for me. I hope that will bring me some relief. This past week has been horrible but I remain optimistic. Something good has to come from all of this. That's going to be my advice for the day:
Be your own advocate. Research things and don't always do whatever the doctor tells you. But, hang on to hope because it's there. Someone will figure this out - and when they do, we're going to throw one hell of a party! =)
If you came to me saying that you had acid reflux and the medicine worked for you but you were tired of taking pills, then I'd do the surgery. But, as of now, you only have a 10 to 20% chance of it working. You need to come back to me before they do any kind of surgery on you because it's not going to work.
I trust him and trust his judgement. Instead, he wants me to follow up with Mayo, have some blood work done (because my lipase levels have been really high), and come back to him to talk about what to do next. He suggested a procedure called ESOPHAGEAL MANOMETRY. Basically, it's a procedure that involves a tube going into your nose and into your stomach for 24 hours. It tests the vomiting to determine if it is stomach acid or actual vomit.
However, his opinion seems to be that my lower bowels are paralyzed or have lack of motility, not my stomach itself. I'm starting to think that too - but nothing seems to go down. Everything seems to come back up. However, my belly was really swollen when I saw him today. On the scale it looked like I had gained weight because my stomach is so bloated, it looks like I'm carrying around a watermelon. I haven't eaten hardly anything but I have been drinking a lot of water. He noticed the bloating too because I am usually lighter on the scale and my face has thinned out.
If you look at pictures of me from last year or the year before compared to now, my face has really thinned out. I've lost a pants size.
He called in stronger anti-nausea medicine for me. I hope that will bring me some relief. This past week has been horrible but I remain optimistic. Something good has to come from all of this. That's going to be my advice for the day:
Be your own advocate. Research things and don't always do whatever the doctor tells you. But, hang on to hope because it's there. Someone will figure this out - and when they do, we're going to throw one hell of a party! =)
Saturday, March 16, 2013
Radio Interview, Isolation Help, and Updates!
Do you ever feel alone? You know that's not true logically, but you can't help but think it. It's little things like when you try to call someone and they don't answer or if you try to make plans around your illness but have to cancel them.
I have friends who tell me that I'm a strong person, but I don't feel strong. Being alone is an irrational fear that people who suffer from any kind chronic illness. You can't escape, no matter how many people you talk to or invite over. Being chronically ill is challenging enough and maintaining a social life is pretty much non-existent.
That's one of the challenges of a chronic illness. Sometimes, you feel alone and down and think that no one understands what you're going through and that you're alone. That's not true. You're never alone.
I have my husband, my family, my fraternity, and my other family on the GASTROPARESIS Facebook page. All you have to do is reach out to someone to talk to. And it's when you feel the most alone that you should break out of your comfort zone and talk to someone. It really does help. I'm seeing a therapist that my doctor recommended because I can't do this on my own right now. Sometimes it's OK to ask for extra help when you need it. It doesn't make you a failure or anything like that - it makes you stronger. It takes a strong person to ask for help when you need it. Talking to someone removed from the situation can be a bit comforting and it helps you to vent your frustrations. In doing that, it makes you feel almost free and emotionally lighter. If you are feeling sad, depressed, anxious, or just overwhelmed, I would recommend seeking help for the short term. This will help you to get over these hurdles, as it's helped me.
If you can't afford a therapist, do the next best thing - reach out to a friend. All of the admins on the Gastroparesis page are available to talk. We will listen to you because we know what you're going through. It really helps to have an understanding ear as well. I choose to write to help me deal with some of my frustrations but there are other outlets. You have to find the best one that fits you.
Speaking of outlets, I was on my friend Jason's radio show today to speak out about Gastroparesis. I tried to do Gastroparesis justice. If you missed the radio interview, you can listen online HERE. I was a bit nervous but I hope that I was able to tell my story without getting off topic too much. Jason is great and I'm so glad that I was able to do his show today!
I've had some really bad stomach attacks the two weeks. I've been very miserable and in a lot of pain. I'm trying to do my best but nothing's really staying down - drinks or what I've been trying to eat. I had a huge dehydration headache last night that wasn't going anywhere and my stomach felt like I had been drop kicked in the abdomen. I even pulled a muscle in my abdomen and my back yesterday - so I had issues moving. I'm glad I get to rest this weekend but I feel bad that I'm going to miss St. Patrick's Day tomorrow. I would love a green beer and to go out and hang out with friends but that's not in the cards for me. My lips are all cracked and chapped from dehydration and I've cut the corners of my mouth, but I'm not sure how I managed to do that.
All in all, I'm hanging in there and I still remain optimistic. I need to call the Mayo doctor to tell him that the medication he gave me isn't really working. I feel bad but still feel hungry. However, I am scared to eat.
I have friends who tell me that I'm a strong person, but I don't feel strong. Being alone is an irrational fear that people who suffer from any kind chronic illness. You can't escape, no matter how many people you talk to or invite over. Being chronically ill is challenging enough and maintaining a social life is pretty much non-existent.
That's one of the challenges of a chronic illness. Sometimes, you feel alone and down and think that no one understands what you're going through and that you're alone. That's not true. You're never alone.
I have my husband, my family, my fraternity, and my other family on the GASTROPARESIS Facebook page. All you have to do is reach out to someone to talk to. And it's when you feel the most alone that you should break out of your comfort zone and talk to someone. It really does help. I'm seeing a therapist that my doctor recommended because I can't do this on my own right now. Sometimes it's OK to ask for extra help when you need it. It doesn't make you a failure or anything like that - it makes you stronger. It takes a strong person to ask for help when you need it. Talking to someone removed from the situation can be a bit comforting and it helps you to vent your frustrations. In doing that, it makes you feel almost free and emotionally lighter. If you are feeling sad, depressed, anxious, or just overwhelmed, I would recommend seeking help for the short term. This will help you to get over these hurdles, as it's helped me.
If you can't afford a therapist, do the next best thing - reach out to a friend. All of the admins on the Gastroparesis page are available to talk. We will listen to you because we know what you're going through. It really helps to have an understanding ear as well. I choose to write to help me deal with some of my frustrations but there are other outlets. You have to find the best one that fits you.
Speaking of outlets, I was on my friend Jason's radio show today to speak out about Gastroparesis. I tried to do Gastroparesis justice. If you missed the radio interview, you can listen online HERE. I was a bit nervous but I hope that I was able to tell my story without getting off topic too much. Jason is great and I'm so glad that I was able to do his show today!
I've had some really bad stomach attacks the two weeks. I've been very miserable and in a lot of pain. I'm trying to do my best but nothing's really staying down - drinks or what I've been trying to eat. I had a huge dehydration headache last night that wasn't going anywhere and my stomach felt like I had been drop kicked in the abdomen. I even pulled a muscle in my abdomen and my back yesterday - so I had issues moving. I'm glad I get to rest this weekend but I feel bad that I'm going to miss St. Patrick's Day tomorrow. I would love a green beer and to go out and hang out with friends but that's not in the cards for me. My lips are all cracked and chapped from dehydration and I've cut the corners of my mouth, but I'm not sure how I managed to do that.
All in all, I'm hanging in there and I still remain optimistic. I need to call the Mayo doctor to tell him that the medication he gave me isn't really working. I feel bad but still feel hungry. However, I am scared to eat.
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