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,

“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.”

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,

"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.

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.

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,

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! =)

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.

My First Flight with GP & Updates for this Week

My fraternity brother decided to have his birthday shindig in Fort Lauderdale because they are known for their Tiki drinks. So, this meant that it was going to be my first time flying with a SPINAL CORD STIMULATOR and with GP. Needless to say, I was a bit nervous. My husband gets hassled every time he goes to the airport because he has an insulin pump - so what were they going to do to me?

We got there and checked in early. Everything actually went pretty smoothly. We checked our bags and then went to security. I took off my shoes and put all of my stuff in the bins (the body scanners were disabled, which is good because of the implant, I can't go through them) and went through the metal detector. The TSA agent yelled at me because I left my stuff in the bins to go through the machine, not realizing that my husband was behind me keeping an eye on my things. When the TSA agent realized this, he apologized to me.

We boarded our flight and took off for Florida. The engine smell was making me very ill, but I was in the window seat out of three seats, which were all full. So, I couldn't exactly get up to run to the bathroom. I had a bag, just in case. I just felt extremely nauseated but didn't vomit. I was quite proud of myself.

When we got to the hotel, they didn't give us a room block like they said they were going to, so all of my fraternity brothers and friends were scattered all over the hotel. I sat by the hot tub while I was talking to friends and this rude security guard comes out of nowhere. We were being quiet. There were even a group of teenagers sitting by us and they were quiet too. The front desk said we could stay in the hot tub until 12am but the security guard herded us like cattle out of the pool area and locked it. Then, he spent the rest of the night patrolling it. I wanted to punch him in the face, mostly because I don't get out much and I REALLY wanted to hang out with my friends.

So, the next morning, the hubs and I got up and went to the hot tub, since it was open now. We met a friend there. They ate ice cream in the hot tub while I just soaked. The water felt SO good on my poor muscles. Bending over to vomit really does take a toll on your back and my SCES is still healing in place, too.

After the hot tub, we took a nap. When he woke up, it was time to dress for dinner which was at the MAI KAI RESTAURANT.









I was looking forward to hanging out with my friends and just being OUT and having FUN! However, we were lead to go back to a private-ish room. I ordered one Tiki drink, which I regretted later, but I wanted to celebrate actually smelling the beach and being with my brothers and friends. We were down there to celebrate one of my good friend's birthdays! Anyway, the waitress was great in the back area where we sat. Our group had to be broken up into three parts for dinner and the show that the restaurant puts on. We were in group three.

Finally, we were seated for dinner. I found soup that I could eat that wouldn't make me sick that I was pretty happy about. However, we had BBBBBAAADDDD service! The guy took an hour to fill up our water glasses and never checked to see if we had refills. He wouldn't get his manager when we asked. One of my friend's food was too spicy that even he couldn't eat it. My soup was also really spicy and I couldn't eat it either. Usually, that kind of soup isn't spicy at all. The manager comped some of our meals but we refused to go to the show after that because of the bad service we got.

So, we all went back to the hotel room and goofed off.

I pushed myself too hard this past weekend and the past few days. I cleaned my room because I couldn't take it anymore. I think I managed to get the weird spells out of the carpet. All the laundry is done, which is awesome because we had mountains. I've been vacuuming the room daily to help Jesse with his allergies. Oh! And we hired a maid! She'll be here Wednesday afternoons. I'm very happy about that because I usually don't have the energy to clean. I wanted to clean our room though to do something nice for my husband since he's been so good to me. He's been patient and understanding about me getting sick so the least I can do is the laundry and to clean up our room so he can walk without tripping on stuff! lol









Still getting over pneumonia. Everything still makes me a bit tired. Trying to get up and move around as much as possible but that wears me out too.

Health Issues Update & Bare Your Belly Project

Sorry that it's been a while since an update. I've been really ill. For the past week, I've been sleeping on a weird schedule and I've just been fatigued. I have a lot to update you on!

It started a week ago with flu like symptoms. My body ached and I couldn't stop sneezing. Then, the fever started and I knew that my body was no longer fighting this illness off on my behalf. If you can picture a NyQuil commercial, that was me! I also had an experience that I've never had before and that I hope never to repeat.

Now, through all of these flu like symptoms, I also had my normal stomach issues. I was in the middle of vomiting and all of a sudden, I sneezed. Let me tell you, that is not something I want to repeat. Before I could react, green stomach acid shot out of my nose! The pain was horrible - it burned into my right sinus. I could feel the sinus swell up, and the congestion get worse. I didn't even know that sneezing while vomiting was possible!

The vomiting finally ceased and I was able to clean up some. I tried to clean my nose to help the congestion, but I had nothing to take for it nor could I find my NETI POT. I laid back down in bed because through all of this, I've had absolutely no energy. My husband told me it was time for the doctor and I just nodded. I didn't really want to go because I knew he would poke me with more needles, but I was too sick to argue anymore. Plus, my right sinus was just getting worse and so was my cough. My dry cough progressed into a barking cough. I sounded like a mutated seal.

My husband drove me to the doctor yesterday. Walking out to the car even took its toll on me and I had issues catching my breath. We drove to Urgent Care and remarkably, there was no line. So, I was seen quite quickly for that practice. The doctor came in and looked me over. He made me take deep breaths while he listened to my lungs. I couldn't take breaths without coughing everywhere. I tried not to cough. My blood pressure was back up and I was running a fever. I explained my stomach issues to the doctor, since this was a new doctor, and told him that swallowing all of this draining mucus was making the nausea and vomiting worse. He told me that I needed steroid and antibiotic shots, because I had pneumonia. He elected to give me the shots yesterday to give my stomach a break. He said I could take the pills as of this (Monday) morning.

He called in an antibiotic, steroids (which I HAVE to eat something with or they'll make my stomach worse), an inhaler (which I have to use four times a day for seven days regardless if I feel better or not), and a cough syrup to help me sleep at night. He said in a few days that I ought to be feeling much better.

I can tell you that I already feel better today. I'm able to move around a bit more. I'm still extremely tired and it's probably going to be another week before I'm back to my "normal" self, but I'm glad that I went to the doctor. I really thought my body was fighting it off. I guess next time, I won't procrastinate and just go to the doctor when I start to feel ill. Also, I did some research yesterday and found that the Pneumonia Vaccine has to be re-administered if it's been more than 5 to 10 years since the original vaccination due to declining antibody rates. So, that's why my vaccine didn't hold up. I'll get re-vaccinated when I feel better. I'll need to set up a reminder.

I'm trying to keep up with my other health issues so that I can determine what is causing issues with my stomach. It's hard to stay on top of so many medical issues, but the following are updates on what else, health wise, is going on with me.

I'm back on DEPOT LUPRON for my endometrosis. The GYN said that if this doesn't help after six months, they'll have to schedule a surgery and go in and clean everything out. I'm hoping the injection works because I really don't want another surgery. I need to schedule a GYN visit since I went last year in July. It's hard for me to schedule visits like this in advance because I don't know whether I'll have a good day or bad day stomach wise.

I followed up with my doctor today in regards to my Spinal Cord Electrical Stimulator (SCES) today. My usual doctor was out sick, which I didn't know, so I saw another doctor. When I walked in, they asked me for a urine sample for a drug screen. That caught me a bit off guard since I've never been accosted for urine as soon as I walked in before. I was unable to give them a urine sample because I've been dehydrated and sick this past week. I told the nurse that she was welcomed to draw blood if she needed to, that I had nothing to hide, but I couldn't do the test she wanted today. To my surprise, she said it didn't matter and just dropped the entire thing. I guess they're testing for prescription abuse? I have no idea. I told them about the medications my doctor put me on yesterday, just in case they thought I was abusing hydrocodone. The doctor I saw, who was filling in, told me not to take my cough medicine and pain medicine at the same time because they were basically the same medication. That was good to know.

Additionally, I explained to her that the SCES was still a bit painful to lay on and that repetitive bending over aggravated the muscles around my SCES. After she looked at my back, she offered to do TRIGGER POINT THERAPY for me to help loosen up my muscles as an "add in" to the surgery schedule today. I had never heard of this but I told her that if it helped, I was willing to try it.

So, the staff penciled me in and took me into the PRE-OP part of the clinic. They had me sit on a stool and sign some consent forms. The doctor brought over a long syringe filled with steroids (keep in mind I just had two injections yesterday as well, near the same spot). She felt around my SCES and immediately I felt the knot and told her so. She nodded in agreement and told me that this was normal and a part of the healing process. She counted down and stuck the needle in about four different knots. The first knot she found and injected steroids into, it was like my muscle exhaled. I didn't realize it had been that stiff and knotted up! Once the muscle relaxed, my back felt ten times better. This happened again for the other three knots that followed. The medicine she gave me really did make a difference. I'm a bit scared of steroid injections because I had sepsis from one a few years ago, but this really made my back relax and allowed the implant to sit a bit more comfortably.

She told me that she would repeat the procedure if I needed it again. I thanked her and she gave me a refill on my medications and sent me home.

I did manage to have one accident on the way home, though. I did get sick on the car floor board before I could reach my emesis bag. So, I was out there scrubbing the floor of my car today. The cleaner smell makes my nausea worse. I just need to take it in to be detailed and let someone else clean it. Horrible, I know, but I don't want to make a small mess even messier. I'll be sure to tip whoever cleans it really well.

On a side note, my friend and GASTROPARESIS Facebook Page Creator, LaShelle, started a wonderful project that I want to help support. It's called the Bare Your Belly Project. She writes,

"BARE YOUR BELLY: Fat, bloated, scarred, boney, thin, discolored, abused, beat up, tubed, and painful bellies are not something we should hide away under layers of fabric. People can’t look at our faces and see what Gastroparesis has done to us. How Gastroparesis has changed the way we live our lives, or even what it’s taken away from us. We can’t expect others to know how it feels, or understand our battles, or even revel in our daily victories if we never get off the bench to show them what it means to have Gastroparesis. Would you have believed it yourself if you had never had it or never taken the time to get to know someone who did? It’s time to let go of our reservations of “baring all”. We live with Gastroparesis on a daily basis; we fight for our lives every day by rolling out of bed and touching our toes to the floor for another day of struggling to feed our bodies to stay alive. Every weight gained or weight lost to some GPers is either a triumph or a defeat. If cancer survivors can bare their scarred and broken bodies, we can too. Each and every one of us is beautiful, our ability to wake up and face another day… is nothing short of miraculous strength. YOU HAVE A RIGHT to show off your strength! Bare your scars! Bare your belly for Gastroparesis!"

She made a wonderful video that I would love you to check out and share with your friends! You can find the video, HERE. Please watch and share it with everyone you know. It will help people understand that even though Gastroparesis is an invisible illness, not all of it is invisible. Gastroparesis does leave its mark. <3 Thank you in advance!

New PCP Visit Yesterday

I went and saw my new PCP yesterday. I filled out the patient information packet, which made checking in much easier. That clinic is pretty busy and there were only two doctors working yesterday. I waited around in the waiting room for a bit and noticed this sign:

I had to giggle.

The nurse called me back and took my vitals. She then sat me in a room and asked me a bunch of questions about my medical history. I answered all of them as truthfully as I could.

Then, the doctor came in. He was very friendly but when I told him I couldn't sleep and that I would really like something to knock me out, he refused to give me anything. It made me feel like a pill head but I have extremely bad insomnia most nights. It's like I can't turn my mind off. Anyway, he called in more Bentyl and Zofran for me with refills, in hopes that would help the spasms and nausea. The Mayo doctor cleared me to be back on Bentyl. He made me sit in his office (his office has a lab) for another blood draw, even though I brought my medical records with me from Mayo where they just DID a blood draw. The lab tech poked me about four times so I'm bruised all up and down my arm from Mayo and from this doctor's office.

He said my blood test results showed my triglycerides were high but he said since I'm sick and I probably haven't been eating much, he would retest it later. The total time I spent at the doctor's office - 3 hours.


He also gave me a medication that I've never heard of before. It's brand new and it's used to idiopathic constipation, usually used for people with Irritable Bowel Syndrome. He prescribed it to me so that I could see if it helped. He thinks that's where most of my pain is coming from but I disagree. Yes, it may not be helping the situation but my pain is very intense and it's right where my liver is. Here is the medicine he prescribed and I"m curious if anyone has tried it with positive results:

I'll have to let you know how this new drug works out. My pill case is getting full again.

I went to my other doctor, the one who diagnosed me with ADD, and told him about my anxiety, panic attacks, and insomnia. He switched me from Zoloft to Celexa, for anxiety. He also gave me Trazadone to take at night to help me sleep. I could have kissed him! So, I actually got some rest last night but I've been so nauseated all day. It's hard to function when you're so tired and in pain all of the time.

I found this article and wanted to share it because I thought it was a great read.

Gastroparesis throws your entire life a curve ball. EVERYTHING changes: your diet, your sleeping patterns, your morning routine, your social life, your professional life, your level of physical activity, you name it. I have scoured my brain and can not think of one aspect of life that does not change once Gastroparesis begins to take over. As much as you try to continue being “normal”, it isn’t going to happen. You are kicked right out of the fast lane onto a beaten up wooded path that not many people know about or care to find. You have to learn how to navigate this path and hope that you can find your purpose life. The purpose that you are meant to pursue while living through the ups and downs of Gastroparesis. You are unrolling the path by yourself and have no idea where it is going.

Read more about the article HERE.

Gut Pain Management: Visceral pain and Gastroparesis

This was shared with me by my friend Freda. I thought it was important enough to put into my blog. The link to the article can be found HERE.



"Gut pain management: Visceral pain and gastroparesis

Excerpts from the presentation by: Robert Twillman, Ph.D. who spoke at the GPDA and ANMS organized consensus meeting on the Treatment of Gastroparesis, held in September 2004 at the Kahler Grand Hotel, Rochester, MN.



Robert Twillman PhD

Pain Management Program Director

University of Kansas Hospital

Clinical Associate Professor of Psychiatry and Behavioral Sciences



University of Kansas School of Medicine



Historically, pain has been a neglected symptom in patients with gastroparesis, even though (and perhaps because) it is often the most problematic to manage. In the most extreme cases, pain can dominate the picture, resulting in considerable suffering and utilization of health care resources. The problem is often compounded by the reluctance of many physicians to recognize the pain as “real”, in part due to the lack of overt evidence of significant inflammation or injury to the stomach. This may lead to dismissal of the pain as a manifestation of “narcotic-seeking behaviour” or to an attribution of purely psychological factors as the root cause of the pain. The end result is often a desperate patient bereft of a long-term relationship with a caring physician.



Much of this problem stems from a complete lack of knowledge about the causes of pain in gastroparesis. There are no experimental studies or clinical trials on this subject. Therefore the approach to treatment is both arbitrary, subject to the biases of the treating physician, and empirical, without any biological rationale to guide therapy.



The approach to pain in these patients begins with an empathetic understanding and recognition that the pain is real. Such an understanding and recognition will usually relieve anxiety in patients and their families, and will promote a trusting relationship between physician and patient.



Possible Causes and Nature of the Pain

Looking through the literature, the problem of chronic pain in gastroparesis is estimated to affect anywhere between 50 and 90 percent of patients. The cause of this pain is not well known. Neuropathic pain, pain generated by damaged or inflamed nerves, is thought to be the primary cause, and is one of the most challenging types of pain to manage. Neuropathic pain is common in idiopathic, as well as in diabetic gastroparetic patients. This type of visceral (abdominal) pain is often described as diffuse, dull, achy and crampy. (Writer's note: Other types of pain described by gastroparetic sufferers may be sharp and localized in areas over the abdomen. The nature of this pain may be more related to muscular spasms within the stomach or small intestine, or related to trapped gas.)



The sensory wiring of the gastrointestinal tract is very complex and bound up with the central nervous system, tying it to emotions and behaviors. This is why pain is a mind, body and spirit phenomenon requiring more than just medications to help control the problem.



We know that sensory nerves within the gut are sensitive to stretching and distention; as well, chronic pain can cause a hypersensitization within the central nervous system to the painful sensations. Also, any regional inflammation, say in the stomach or esophagus, becomes hyperactive, working overtime relaying messages to the brain communicating “pain”. Further compounding the problem, many patients with gastroparesis will describe an acute pain occurring soon after eating, layered on top of their chronic pain. (This acute, sharp pain may be related to spasms occurring in the upper portion of the stomach due to its failure to relax and “accommodate” the just-eaten food. As well, a sluggish emptying of the gall bladder seems to be tied up with poor emptying of the stomach, coupled with uncoordinated muscular action by the small intestine. This may all add to the pain experienced soon after eating).



Where to Begin?

Psychological interventions are helpful measures and should be considered as a part of the pain-management regimen for every patient presenting with gastroparesis-related pain. These interventions avoid the added risks posed by pharmacotherapy, and help promote a sense of control on the part of the individual. Simple techniques such as deep relaxation, cognitive restructuring, and distraction may be helpful, and can easily be taught by most health care providers. Other techniques such as acupuncture, hypnosis, biofeedback require a greater level of expertise on the part of the health care practitioner, but should be utilized whenever available.



The primary health care provider needs to be well versed in the pharmacology of analgesic drugs including narcotics. Even though a pain specialist may be involved in their care, patients with gastroparesis-related pain often rely on their primary physician to provide relief during flare-ups.



(For those who live in small towns and rural areas, finding help for more severe gastroparesis related-pain may be difficult. Try consulting with a cancer pain specialist or palliative care doctor in your town. They can guide you through logical choices for your pain care).



What are the Drug Choices?

A wide variety of drugs are available from the traditional analgesic (pain relief) medications to a number of other unrelated pharmacological groups employed for pain management.



Beginning pharmacological therapy for abdominal pain management should start with the non-steroidal anti-inflammatory (NSAID) medications. Many of these popular drugs are available over the counter while others require a prescription. Some examples are:



diclofenac (Voltaren®, Cataflam®)

diflunisal (Dolobid®)

ibuprofen (Motrin®, Advil®)

indomethacin (Indocin®)

ketoprofen (Orudis®, Oruvail®)

ketorolac (Toradol®)

naproxen (Naprosyn®, Alleve®)

piroxicam (Feldene®)



These medications can be helpful but have the potential to cause stomach ulcers and bleeding. To help counter this problem, the use of stomach acid-suppressing medications may be useful. The newer agents, the COX2 inhibitors, were favored since they don't irritate the stomach lining, yet recently some have been pulled from the market due to an increased risk of strokes and heart attacks.



Antispasmodics may have particular application in treating painful abdominal cramps or sharp, painful spasms occurring soon after eating, but their use is limited in gastroparesis. Antispasmodics have the effect of further slowing down the digestive tract. While not dismissing them outright, some formulations come in rapid and short-acting preparations. Levsin/SL®, for example, can be chewed or placed under the tongue and allowed to dissolve.



The tricyclic anti-depressants (TCA) drugs have become one of the mainstays for treating chronic abdominal pain. Though the FDA has never officially approved them for this application, they have been well researched to establish their effectiveness in pain management. TCAs work best for the burning/searing type of pain common to neuropathic pain syndromes. The TCA drug most studied and prescribed most commonly is amitriptyline (Elavil®). Dosages are started at a very low level, lower than used for treating depression, and then slowly increased. It may take several weeks before benefits of pain reduction are experienced. Low dosages are also important because TCAs can slow the emptying of the stomach and intestines. Other examples of TCAs:



Desipramine (Norpramin®)

Doxepin (Sinequan®)

Imipramine (Tofranil®)

Nortriptyline (Aventyl®, Pamelor®)



Unfortunately, TCAs can cause bothersome side-effects of gastrointestinal distress. Nortriptyline may be the least likely to cause these unwanted problems. Working closely with your doctor and carefully adjusting dosages is essential.



The selective serotonin reuptake inhibitors (SSRIs) have not been clearly proven to be effective tools against neuropathic pain.



Finally, a new category of antidepressant drugs the selective serotonin and norepinephrine reuptake inhibitors (SSNRIs) are showing promise in treating neuropathic pain. Venlafaxine (Effexor) and duloxetine (Cymbalta) are two agents being used. The FDA has recently approved Duloxetine for its use in treating diabetic neuropathic pain.



Anticonvulsant/anti-epileptic drugs have also demonstrated their effectiveness in clinical trials against burning/searing pain of neuropathies. A wide selection of these drugs is also available and can be used in combination with the TCAs to increase overall potency. Examples are:



carbamazepine (Tegratol®)

clonazepam (Klonopin®),

gabapentin (Neurontin®)



Gabapentin (Neurontin®) has become very popular, primarily due to its superior safety profile compared to the other anticonvulsant medications. Gabapentin has relatively few side effects and is well tolerated especially if the dosage is gradually advanced in increasing increments. It has few, if any, drug interactions. It is expensive, but it does not require routine monitoring of blood levels and liver functions tests as is required for Tegratol® surveillance.



Clonidine (Catapres®), an anti-hypertension drug, has also been shown to work for neuropathic pain. Its role, however, may be more limited in treating abdominal pain syndromes since its effectiveness has only been demonstrated through intrathecal administration, and less so transdermally or with orally administered preparations.



The last category of drugs to discuss is the narcotic drugs or “opioids”. The best known is Morphine. Surprisingly, narcotics have not shown to be that effective for neuropathic abdominal pain like that of gastroparesis.



There is an expansive variety of narcotic, and synthetic narcotic drugs available to the physician in treating his patients. Many of these drugs have an undesirable effect of slowing down the gastrointestinal tract thereby worsening the other symptoms of gastroparesis. It is possible to get around these problems of narcotic drug- induced, slowed-gut motility and still provide good pain relief.



Many patients with mild-to-moderate pain symptoms can be managed without graduation to regular narcotic use. However, there remains the individual with severe pain who needs more effective pain control. Even though opioids may not be extremely effective in this condition (in keeping with the possible neuropathic nature of the pain), they are inevitably used for this category of patient, and may have some utility.



This creates at least two major issues: first, the possibility of narcotic dependence and second, the potential risk of slowing gastrointestinal motility and further contributing to worsening of symptoms.



Physical dependence resulting from the chronic use of narcotics to treat pain is an expected outcome, and patients should be cautioned not to discontinue their use without a tapering schedule. Addiction is a much rarer phenomenon, especially in patients without a history of substance abuse. Doctors and patients should understand the distinctions between physical dependence and addiction, and are referred to definitions published by the American Pain Society, American Society of Addiction Medicine, and American Academy of Pain Medicine.



With respect to the problem of constipation, the scientific literature suggests that methadone, fentanyl (Duragesic), and Buprenorphine (Temgesic, Subutex) may be narcotics that produce less constipation than other drugs.



Another drug (a derivative of codeine) called tramadol (Ultram®), may have some promise as a constipation-sparing analgesic for patients with moderate pain.



Additionally, there are a number of studies in the literature looking at treating constipation by using narcotic-blocking agents. These drugs help to block the side effects of narcotics such as constipation, while not diminishing the pain-reducing effects of the prescribed narcotic.



Examples of these narcotic-blocking drugs used along with narcotics are:



naloxone (Narcan®),

Methylnaltrexone (MNTX), and

nalmephene.



Taken at very low doses, and taken orally, they can reverse the negative impact of the narcotic on the GI tract.



What is intrathecal?



What are intrathecal medication delivery systems?



The spinal cord is protected by a tissue covering.



The intrathecal area is the space between this tissue covering and the spinal cord.

Medications can be delivered into this space and bathe the spine with various drugs.



For more severe abdominal pain syndromes, implantable devices have been devised to permit regular drug delivery through a system composed of two implantable components: an infusion pump and an intrathecal catheter. The pump is placed abdominally into a pocket created underneath the skin, while the catheter tip is inserted into the intrathecal space of the spine, then tunneled under the skin and brought to the connection site on the pump. Medication can be delivered through the pump at constant or variable flow rates.



Medtronic manufactures intrathecal drug delivery systems.



Many different types of medications can be infused into the intrathecal space for pain management.





The science of pain control is looking even farther afield to agents like ketamine, a short-acting, general anaesthetic; it can be delivered intra-nasally via a nose spray. Ketamine provides a sense of euphoria and emotional detachment from the pain. Finally, even drugs, such as memantine (Namenda), used for treating Alzheimer's disease are being studied for use in neuropathic pain relief.



Celiac plexus nerve block

Another method used to control chronic abdominal pain is by means of chemically damaging a collection of nerves, called the “celiac plexus”. This is the main nerve branch which communicates pain from the abdomen. Generally, a trial block with a short acting and reversible agent is used before the physician proceeds with permanently destroying the celiac nerve bundle though injection. Complications can occur, so this method is reserved for after all other medical approaches have failed. Published reports show the majority of patients have a good response of pain reduction.

_____________________



On the Horizon:



In Canada, the federal government has recently approved a new cannabis (marijuana)- based drug called Satives. Developed by GW Pharmaceuticals and Bayer, the drug is conveniently administered via a mouth spray. Canada is the first country in the world to approve the drug. Approved for use in treating neuropathic pain of MS, it will help fill the need for more neuropathic pain therapies.





Ocean “cone snails” have a neuro-toxic sting that is providing a new chemical family for enthusiastic research into more effective pain-control medications. Ziconotide, a synthetic form of the cone snail toxin has been recommended for approval by the FDA. Intrathecally administered ziconotide produces pain reduction and has an advantage over intrathecal morphine in that there is no development of tolerance after prolonged use.



Take-home Message:

Often multiple drug therapies may be necessary for controlling more severe pain. Combinations of medications such as the tricyclic antidepressants and anticonvulsants are effective; and occasionally, some individuals will also require narcotic therapy added to this regimen. If pain management fails with these steps, then treatments with implantable systems, such as a spinal cord simulator, or intrathecal pump should then be considered.



The constipating effect, and the slowing of gastric emptying caused by narcotics can be counteracted with low doses of narcotic-blocking agents. This does not diminish the pain- reducing action of the prescribed narcotic.



Regaining Control

Pain and the symptoms of gastroparesis can take their toll on the mind, body and soul greatly diminishing quality of life. Finding effective therapies that help subdue symptoms makes everyday coping much easier. Connecting with an empathetic physician and psychologist/psychiatrist to work with you is your best option.





Just trying to keep everything in balance and manageable is a daily struggle. Here are some tips:



Connect with a supportive community.

Find spiritual strength through meditation or prayer.

You are not to blame for your pain.

Stress and emotions just modify your experience of pain, they do not cause the pain.

Seek professional help.

Good pain-management is your right. Find a doctor willing to work with you.

Have an advocate willing to go with you to your medical appointments.

Keep a journal.

Make connections with nature and/or pets."