I met with the doctor today at Mayo to find out the results of my pH probe test. The doctor told me that during my twenty-four hour test, the stomach acid was present 95% of the time. That means that my acid reflux is making the vomiting worse because the medication they put me on for it (Aciphex twice daily) isn't working. During fifty-six recorded episodes during the test, forty-four of them showed vomit and not acid. That just floored me. I had THAT much food and acid come up during twenty-four hours! That was just a lot to take in.
He explained that no surgeon would do the nissen fludoplication surgery that he was considering before because of the vomiting. Additionally, my vomiting would cause the surgery to become undone, which would be pointless.
The acid needs to be reduced to at least 25%. The doctor wants me to try breathing exercises and relaxation techniques the psychologist gave me because he doesn't want me on a lot of medications.
The psychologist I consulted with this morning thinks that if I can reduce my anxiety then that will help control the vomiting. The problem is that I have anxiety BECAUSE of the stomach issues. The psychologist also wants me to try walking thirty minutes a day. The issue I have with that, that I explained to him, was that it's a catch-22 for me. I have issues leaving my bathroom long enough to do anything or I'd go hiking! So, my solution that I came up with, is to drag one of the Wii's that we own downstairs, hook it up to my TV, and do yoga on the Wii Fit so that I can exercise for thirty minutes a day. He also printed out a list of psychologists for me to see in Atlanta that I should follow up with.
Meanwhile, the GI doctor wants to see if I receive any relief from the alternative methods - deep breathing and relaxation. He put me on Protonix 40mg, twice daily, to protect my esophagus.
He told me to follow up with my doctor in Atlanta to do a chronic liver disease test and a pelvic floor test. I will wait for his notes before I make an appointment with my regular GI doctor. I'm not quite sure what to do about the GERD. I've been on every medication known to man for the acid reflux. What do I do if none of them work?
I'm going to scan in the relaxation techniques and will attach them to this post for later. I wanted to write out what the doctor told me before I forgot. =)
Friday, May 10, 2013
Thursday, May 9, 2013
pH Probe Test - Mayo Visit Day 1
Well, I went to Mayo this morning and had the pH probe test done. I sat down and the nurse explained the test to me. The probe will test my vomit for bile, stomach acid, regurgitation, etc. This test will help the doctor determine how best to treat me. She had me sit facing her while she inserted the small catheter into my nose, down my throat, and into my stomach. She didn't use any numbing agents or anything before she put the catheter in. My eyes watered like crazy and she gave me water to sip on while she was inserting the catheter, to make it easier for me not to gag.
Once the catheter was in, the nurse secured it with tape. However, I do not believe it's secured that well because the tube tends to move in and out of my nose with every bump in the car, swallow, or movement. It's going to take some getting used to.
Illustration of where the pH Probe goes.
The nurse told me that I needed to take in three meals to ensure an accurate test. I'm not able to eat that much on the best of days, so this is going to be a real challenge for me.
She gave me a receiver that I have to wear, much like the Bravo Test that I had before. The receiver has three buttons that I need to press when I take my Aciphex, if I have heartburn, and if I experience regurgitation. I have to press another button when I eat and when I finish eating as well as when I lay down or up and about. The catheter is attached to this receiver, so I can't leave it on the bed or anything. I MUST carry it with me.
The receiver I have to carry with me.
So, I will wear the pH probe until tomorrow morning. I've got to eat in the morning, which will be difficult because that's when I'm the most sick. The nurse said she'd take it out before I see the doctor in the morning for the results.
My nose is really irritated and I keep sneezing. The tube keeps gagging me but other than that, it's not to bad. I prefer the Bravo Test though.
My pH probe!
Once the catheter was in, the nurse secured it with tape. However, I do not believe it's secured that well because the tube tends to move in and out of my nose with every bump in the car, swallow, or movement. It's going to take some getting used to.
Illustration of where the pH Probe goes.
The nurse told me that I needed to take in three meals to ensure an accurate test. I'm not able to eat that much on the best of days, so this is going to be a real challenge for me.
She gave me a receiver that I have to wear, much like the Bravo Test that I had before. The receiver has three buttons that I need to press when I take my Aciphex, if I have heartburn, and if I experience regurgitation. I have to press another button when I eat and when I finish eating as well as when I lay down or up and about. The catheter is attached to this receiver, so I can't leave it on the bed or anything. I MUST carry it with me.
The receiver I have to carry with me.
So, I will wear the pH probe until tomorrow morning. I've got to eat in the morning, which will be difficult because that's when I'm the most sick. The nurse said she'd take it out before I see the doctor in the morning for the results.
My nose is really irritated and I keep sneezing. The tube keeps gagging me but other than that, it's not to bad. I prefer the Bravo Test though.
My pH probe!
Friday, April 26, 2013
You’ve Been Diagnosed with Gastroparesis, Now What?
I wrote an entry about advice to those who have just been newly diagnosed with Gastroparesis but I wanted to make an entry of my top five things, I believe, you should do after being diagnosed. It contains a lot of good advice from a few members of a Gastroparesis group I was in as well. The links will be in all caps and in bold. Just click on them and they will take you to a different link.
1. You Have Named Your Illness - How to Help Family/Friends Understand
First, it's going to be hard for other people to adjust to the fact that you have an illness and it has a name. It's no longer invisible. People see you and it is NOT all in your head. However, having an invisible illness can be tricky because people often don't understand what they can't see. It can be difficult with all of the extra stress an invisible illness can put on you, so, I am going to recommend two of my blog entries that you should read and maybe read over with again with friends and family.
Please remember that people react differently to different situations. If people seem angry with you or tell you that it's all in your head, just give them some space. I had a friend who was very angry with me before I was diagnosed because I kept blowing off going to the movies, going out to eat, even going to the theatre! She was angry with me and called me flaky. She stopped calling me. After my illness and after reading my blog, I got a message from her on Facebook. She apologized to me! She said that she knew I was sick but not how sick. So, be patient. The important part is that you found out what's been making you sick and that's a very big step!
The first entry you can find by clicking HERE. is, "How to deal with People Who Say, 'But You Don't Look Sick.'" It's going to happen quite a lot, and you'll need to learn how to be patient with those people. This entry will help you and prep you for when that time comes. I know it's not easy to deal with, believe me, I've dealt with an awful lot, but it will help get you through the worst of it. I did not write this article, but I wanted to share it because it was helpful.
The second entry you can find by clicking HERE is, "How to Talk to Someone with a Chronic Illness; What You Should and Should Not Say." Keep this one to give to people as well. When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful. Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships. There are some tips in that entry to keep in mind when talking to a friend living with an invisible illness. I did not write this article, but I wanted to share it because it was helpful.
I'm going to add one more entry that will help you as well. It's called, "Advice for Caregivers and Loved Ones Who Witness Loved Ones Suffering with Gastroparesis." You can read it by clicking HERE.
2. Look Up Resources For Support
It's really hard to get the diagnosis from the doctor telling you that you are chronically ill. When I was diagnosed with Gastroparesis in March of last year, I had never heard the word "gastroparesis" before then. After I got home from the hospital, I went online to see what I found find out about my new illness and find a support network. When you're told so many times that you make up your illness or that you look great when you haven't eaten in a week and barely have enough energy to take a shower, it hurts. It hurts emotionally and physically. You can talk to a friend, partner, husband, wife, or neighbor. It does help to talk and get those feelings out.
I've found what really helps the most is to talk to people with the same illness that you have. You don't have to explain yourself when you break down and vent, or if you burst out into tears because of a song on the radio. You don't have to hold anything back when you tell them how sick you got after eating something you shouldn't have. They don't push, probe, or anything like that. Most of all, they DO NOT judge! I have compiled a list of great online support groups and resources, and I update the list when I find new groups. The list contains Facebook pages, websites, blogs, and mailing lists. It's important to have resources to not only research GP, but to find people like you to talk to. You can find the list by clicking HERE. This ties in with my next point, you need to be your own advocate.
3. Be Your Own Advocate
Research your illness. 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. 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. I was asked today, actually, by the nurse at an urgent care clinic near my house what Gastroparesis was. I explained it to her and she looked a bit bewildered. But hey, I'll be happy to spread awareness any way I can. If you find a doctor you know, like, and trust, keep them!
Ask Questions about your illness! 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. If you have any further questions after seeing him, write them down and call his office to leave them with the nurses. Your doctor will get to answer them when he has time.
Make sure the medications are helping you, not harming you. When I went to the Mayo Clinic, I was on about twelve different medications. The doctor stripped me off of almost all of them. Two of the medications actually did the same thing as well as could paralyze my stomach! The other medications had side effects that were just awful. You can find out more about Reglan by clicking HERE has irreversible neurological side effects! I was never told stuff like this! Be sure to check with your pharmacist and your doctor to make sure the medication you have is right for you.
4. The Gastroparesis Diet Plan
You want to make sure that you lower your risks of getting a GP attack. I wrote an article containing the diet plan from Mayo that I received from there, plus it links to Pinterest Boards with GP friendly recipes - like smoothies, juicing, and friendly food. Be careful though, everyone is different. What works for someone may not work for you. It's trial and error. It can be found by clicking HERE.
The diet is important because it will also help you determine what you can eat and what you can't eat. Again, no two GPers are the same. I can tolerate Yogurt on good days and most people with GP can't tolerate dairy. My advice is to keep a food journal. Log what you eat, what time you eat, and how much you ate. Also, record any GP attacks you have and the time they start and end. This will help you identify patterns and triggers in your diet. It's helpful and it cuts back on testing at the doctor's office.
5. Don't Give Up!
This is by far the MOST important point! You are NEVER alone so don't give up! Find someone to talk with, to help you through those rough times when you need it most. I have had some really rough days when I wondered what kind of life I was going to lead with this illness. What kind of life can you have if you vomit six to eight times a day? But, it IS a life. My life. I'm lucky to have it, so I plan on fighting for it. I'm excited to pass off a pair of boxing gloves to you so that you can fight along side me, fellow GP Warrior. <3 For more advice from our Gastroparesis Facebook Members on how to cope with being diagnosed with GP, please click HERE.
1. You Have Named Your Illness - How to Help Family/Friends Understand
First, it's going to be hard for other people to adjust to the fact that you have an illness and it has a name. It's no longer invisible. People see you and it is NOT all in your head. However, having an invisible illness can be tricky because people often don't understand what they can't see. It can be difficult with all of the extra stress an invisible illness can put on you, so, I am going to recommend two of my blog entries that you should read and maybe read over with again with friends and family.
Please remember that people react differently to different situations. If people seem angry with you or tell you that it's all in your head, just give them some space. I had a friend who was very angry with me before I was diagnosed because I kept blowing off going to the movies, going out to eat, even going to the theatre! She was angry with me and called me flaky. She stopped calling me. After my illness and after reading my blog, I got a message from her on Facebook. She apologized to me! She said that she knew I was sick but not how sick. So, be patient. The important part is that you found out what's been making you sick and that's a very big step!
The first entry you can find by clicking HERE. is, "How to deal with People Who Say, 'But You Don't Look Sick.'" It's going to happen quite a lot, and you'll need to learn how to be patient with those people. This entry will help you and prep you for when that time comes. I know it's not easy to deal with, believe me, I've dealt with an awful lot, but it will help get you through the worst of it. I did not write this article, but I wanted to share it because it was helpful.
The second entry you can find by clicking HERE is, "How to Talk to Someone with a Chronic Illness; What You Should and Should Not Say." Keep this one to give to people as well. When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful. Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships. There are some tips in that entry to keep in mind when talking to a friend living with an invisible illness. I did not write this article, but I wanted to share it because it was helpful.
I'm going to add one more entry that will help you as well. It's called, "Advice for Caregivers and Loved Ones Who Witness Loved Ones Suffering with Gastroparesis." You can read it by clicking HERE.
2. Look Up Resources For Support
It's really hard to get the diagnosis from the doctor telling you that you are chronically ill. When I was diagnosed with Gastroparesis in March of last year, I had never heard the word "gastroparesis" before then. After I got home from the hospital, I went online to see what I found find out about my new illness and find a support network. When you're told so many times that you make up your illness or that you look great when you haven't eaten in a week and barely have enough energy to take a shower, it hurts. It hurts emotionally and physically. You can talk to a friend, partner, husband, wife, or neighbor. It does help to talk and get those feelings out.
I've found what really helps the most is to talk to people with the same illness that you have. You don't have to explain yourself when you break down and vent, or if you burst out into tears because of a song on the radio. You don't have to hold anything back when you tell them how sick you got after eating something you shouldn't have. They don't push, probe, or anything like that. Most of all, they DO NOT judge! I have compiled a list of great online support groups and resources, and I update the list when I find new groups. The list contains Facebook pages, websites, blogs, and mailing lists. It's important to have resources to not only research GP, but to find people like you to talk to. You can find the list by clicking HERE. This ties in with my next point, you need to be your own advocate.
3. Be Your Own Advocate
Research your illness. 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. 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. I was asked today, actually, by the nurse at an urgent care clinic near my house what Gastroparesis was. I explained it to her and she looked a bit bewildered. But hey, I'll be happy to spread awareness any way I can. If you find a doctor you know, like, and trust, keep them!
Ask Questions about your illness! 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. If you have any further questions after seeing him, write them down and call his office to leave them with the nurses. Your doctor will get to answer them when he has time.
Make sure the medications are helping you, not harming you. When I went to the Mayo Clinic, I was on about twelve different medications. The doctor stripped me off of almost all of them. Two of the medications actually did the same thing as well as could paralyze my stomach! The other medications had side effects that were just awful. You can find out more about Reglan by clicking HERE has irreversible neurological side effects! I was never told stuff like this! Be sure to check with your pharmacist and your doctor to make sure the medication you have is right for you.
4. The Gastroparesis Diet Plan
You want to make sure that you lower your risks of getting a GP attack. I wrote an article containing the diet plan from Mayo that I received from there, plus it links to Pinterest Boards with GP friendly recipes - like smoothies, juicing, and friendly food. Be careful though, everyone is different. What works for someone may not work for you. It's trial and error. It can be found by clicking HERE.
The diet is important because it will also help you determine what you can eat and what you can't eat. Again, no two GPers are the same. I can tolerate Yogurt on good days and most people with GP can't tolerate dairy. My advice is to keep a food journal. Log what you eat, what time you eat, and how much you ate. Also, record any GP attacks you have and the time they start and end. This will help you identify patterns and triggers in your diet. It's helpful and it cuts back on testing at the doctor's office.
5. Don't Give Up!
This is by far the MOST important point! You are NEVER alone so don't give up! Find someone to talk with, to help you through those rough times when you need it most. I have had some really rough days when I wondered what kind of life I was going to lead with this illness. What kind of life can you have if you vomit six to eight times a day? But, it IS a life. My life. I'm lucky to have it, so I plan on fighting for it. I'm excited to pass off a pair of boxing gloves to you so that you can fight along side me, fellow GP Warrior. <3 For more advice from our Gastroparesis Facebook Members on how to cope with being diagnosed with GP, please click HERE.
Thursday, April 18, 2013
How to Deal with the Situation , "But You Don't Look Sick!"
If you have a chronic illness, you've probably been told this lots of times. I know that I have. Sometimes, it's from people who are really trying to be encouraging and polite because they aren't sure what to say. With others, it can be malicious. So, I posed a question to EMILY'S STOMACH The question was, "How do you handle these situations when people say these things to you?" I received a variety of responses. People like Paige have heard things like, "You'd be healthier if you ate more veggies...maybe you should eat some salads..." to "maybe you need some fiber." Fiber is the WORST thing for someone with Gastroparesis to eat because we have so many issues with digestion. Veggies also stay in our stomach and are harder to digest. They can lead to BEZOARS.
My response is to try and educate them about my illness. I try and make them understand what I'm going through. I've used THE SPOON THEORY quite a lot. However, if people aren't open to listening to you explain your illness, then they never will understand. You are better off ignoring them or avoiding them because with all of the stress your chronic illness brings, you don't need that extra worry.
HERE is an article that I think would help in reaching out to others. The article says,
A chronic illness is a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, COPD, cancer, HIV, Alzheimer's and dementia, multiple sclerosis, Parkinson's disease, cystic fibrosis, Crohn's disease, Gastroparesis, and arthritis.
Living with chronic illness can make you feel very alone. Learn about staying connected with people to help cope with your illness.
Talk with People Who Have the Same Illness
Know that you have so much to share and learn from other people.
Learn that others may have the same feelings as you and that they know what you are going through.
Find a support group in your area for people who have the same chronic illness as you. Many organizations and hospitals run support groups. Ask your doctor or nurse how to find one. For example, if you have heart disease, the American Heart Association may offer or know of a support group in your area.
Find an online group. There are online blogs and discussion groups about many topics, and you may find support this way. [as a side note, HERE is the link to my blog article listing resources for Gastroparesis]
Tell Others about Your Chronic Illness
Know that they care about you and that their support will help you.
You may find it hard to tell others that you have a chronic illness. You may worry that they will not want to know about it or that they will judge you. You may feel embarrassed about your illness. These are normal feelings. Thinking about telling people can be harder than actually telling them.
Know that people will react in different ways. They may be:
Surprised.
Nervous. Some people might not know what to say, or they might worry they will say the wrong thing. Let them know that there is no right way to react and no perfect thing to say.
Helpful. They know someone else with the same illness so they are familiar with what is going on for you.
Know that you need everyone’s support.
You may look and feel fine most of the time. But at some point, you may feel ill or have less energy. You may not be able to work as hard, or you may need to take breaks for self-care. When this happens, you want people to know about your illness so they understand what is going on.
Tell people about your illness to keep you safe. If you have a medical emergency, you want people to know what is going on. For example:
If you have epilepsy your co-workers should know what to do if you have a seizure.
If you have diabetes, they should know what the symptoms of low blood sugar are and what to do.
Let People Help You
There may be people in your life who want to help you take care of yourself. Let your friends and loved ones know how they can help you. Sometimes you just might need someone to talk to.
You may not always want people’s help. You might not want their advice.
Tell them as much as you feel comfortable telling them about your illness and how you manage it. Ask them to respect your privacy if you don’t want to talk about it.
If you attend a support group, you may want to take friends, family members, or others along. This can help them learn more about your illness and how to support you.
If you are involved in an online discussion group, you might want to show family or friends some of the postings to help them learn more.
If you are alone and do not know where to find support:
Ask your doctor or nurse for ideas about where you can find support.
See if there is an agency where you can volunteer. Many health agencies rely on volunteers. For example, if you have cancer, you may be able to volunteer at the American Cancer Society.
Find out if there are talks or classes about your illness in your area. Some hospitals and clinics may offer these. This can be a good way to meet others with the same illness.
Get Help With Your Daily Tasks
You may need help with your self-care tasks, getting to appointments, shopping, or household chores. Keep a list of people who you can ask for help. Learn to be comfortable accepting help when it is offered. Many people are happy to help and are glad to be asked.
If you do not know someone who can help you, ask your doctor, nurse, or social worker about different services that may be available in your area. You may be able to get meals delivered to your home, help from a home health aide, or other services.
Here is some advice from others who have had to deal with this as well who are Gastroparesis Warriors:
1. Nola writes, "I had a discussion with my dad about this today. I told him it's easy for him to say that I need to get over it, because he hasn't been starving for six months and plagued by other health issues relentlessly for a year. He remarked that I still have a ways to go before I hit 100. I asked him how much he understands about my health, because I go into starvation mode and weight loss slows and sometimes reverses when it gets worse, and that if I was able to take my metabolic meds, I would weigh 20 pounds less. I told him I don't need him to commiserate with me, but he needs to acknowledge that I'm sick and doing all of this on my own, while he and my mother manage my brothers every medical appointment 2000 miles away (he's 32, I'm 35, so age isn't the issue)."
I had people believe that it was all in my head for years. I was told that CONSTANTLY! Since my diagnosis in March of 2012, I've had friends who have read my blog, who have read what I'm going through, come and apologize to me. I was told by one of my friends that she knew I was sick but not that sick! My family doubted me for a while and I have to say the self doubt also started creeping into my thoughts. But, I can't make up vomiting. I think after my husband saw me projectile vomit off of the top porch a few times, he started to understand.
2. Heather writes, "I try to ignore them. It's hard but I do try! I also tell them why I can't do things like they do."
I try to ignore the malicious people too. I have enough stress in my life without negative people. It does hurt, and sometimes it cuts me pretty deeply from people I thought I was friends with, but in the end, I don't need them in my life if that is how they are going to act. Constantly putting someone down is horrible, especially when you kick someone while they're already down.
3. Stephanie writes, "I refer them to The Spoon Theory... give them a chance to digest and then if they are close I'll initiate a follow up conversation, if they are not close I let sleeping dogs have their rest."
4. Nola writes again, "I had a friend who kept insisting she was going to 'get you back into he gym.' I asked her if I could get to eating more than a few ounces a day first. She then asked me to go kayaking. I told her I'm not consuming enough for a walk let alone an afternoon of kayaking. She hasn't asked about anything since. About two weeks and counting. I've started bluntly telling people, 'I have gastroparesis, it means my stomach is totally paralyzed.' Then I wait, wait, wait for it, the natural response, 'so how do you eat?' 'I don't.' Horror on their faces. At her sons birthday party two weeks ago, I said this to a woman I've known about 2.5 years. She said, 'I knew you'd been sick, but I thought like maybe a cold. You always seem like you are in such a good mood and have so much energy...how?' I smiled, 'I fake it.'"
I have to admit that I fake being all right A LOT! I do so to avoid unnecessary questions and try to keep from drawing attention to myself. I don't want people to fuss over me or worse, say things like I hide behind my illness or I'm always sick. I just smile, put on makeup so I don't look like death warmed over, and go about my day. The people who know me well can tell when I'm having a bad GP day, but to the rest of the world, I'm just Emily.
5. Rose writes, "It all depends on how I'm feeling that day, but there are times I can't go anywhere or talk to anyone because im easily triggered and it's like I'm just ready for someone to say something to me so my defense is up. It gets to me when someone says I could never do that, like I have a choice, they are putting themselves down anyway because I have no choice but to do it, I'm glad I have strong faith."
Stephanie writes, "I have actually said to people, you'd be very surprised what you can do when you aren't given the choice but to deal with it."
We have no choice in the matter. Trust me, if we could turn Gastroparesis off, we would in a heartbeat. It's not a healthy way to lose weight because your body starves and becomes malnourished. Additionally, pain is NOT a choice. The gastric spasms we have are very real and it hurts. I cry because mine get so bad that I actually pull stomach muscles during spasms and vomiting. The spasms lead to vomiting and the vomiting leads to more spasms. It's a vicious circle that we don't choose to have. This does lead to a positive point though, you never know how strong you are until it's the only choice you have left.
6. Melissa says, "I am at the point where I don't even give them a chance to say anything back, because I stay away from those who don't have any clue of what I'm going through, just like they think I am OK! Because I 'fake it' to I make it. It's best to distance yourself from those that are only hindering your health by contaminating your mental well being. I explain to others how I'm feeling and what is going on with this & that (pain & illness) an all they can says is, 'Oh! I was sick like that TOO!' Completely clueless."
I have lots of friends who don't understand what I'm going through. I don't think people can ever truly understand unless they've been there. I try to educate the best I can and for the constantly negative people, as I've mentioned before, I don't talk to them anymore. It's not something I can deal with right now because my patience isn't what it used to be because I'm too ill to deal with petty drama. But, I am determined to spread awareness about Gastroparesis to help educate those who don't know about it. I mean, I didn't know about it until I was diagnosed with it last year. But, I've never been negative to anyone I know with a chronic illness. There have been times when I didn't know what to say, and that's fine. But if you can't say something nice, don't say anything at all.
7. Julie writes, "I have been accused of just wanting attention."
I've been accused that as well and I ignore it. Those people are delusional. Who wants to pretend they are that sick? Because we enjoy staying home and not having a social life? Because we don't suffer enough. This is one thing that really does bother me.
I just want to tell all of you out there who deal with this on a regular basis - stay strong. You have a GP family who loves you and understands what you are going through. You have so much to live for, don't give up.
I want to give a special shout out to Lyndsay, whom I am talking with tonight. She needs love and light, so please keep her in your thoughts. I want her to know that she is loved and there is hope.
Wednesday, April 17, 2013
Gastroparesis and Me + Mayo Clinic Updates
I logged into Facebook today and got a really nice surprise. Tanya, from GASTROPARESIS AND ME posted this,
It wasn't over yet. She contacted me and asked me if I could help out her organization. I was elated! Tanya does really great things in the Gastroparesis community like trying to get legislation passed for Gastroparesis, updated medical news, and trying to spread awareness. I agreed, because it's an honor to work with her. I am not an admin of her GASTROPARESIS AND ME FACEBOOK GROUP as well as an admin on GASTROPARESIS AND ME'S TWITTER ACCOUNT. I'm currently working on trying to get her more "likes" on Facebook. She had 200ish when I started working on her page a few hours ago and it just hit 245. I hope more people will like her page because what she does is very important.
She also linked my blog along with LaShelle's from her website (posted above in the second sentence). You can click Emily's Stomach on her website and it will take you directly to my blog. I am really excited about that! When I started my blog, I never knew it would be this popular! I'm amazed and dazzled by all of you who read it. You really help me in ways you might never know. <3 I'm also working with another group that will eventually become a non-profit for gastroparesis but I can't talk about it right now. I'll announce it when it finally happens and we can all celebrate together! I finally heard from the Mayo Clinic. They set up appointments for me the first week of May. On the first day that I'm there, they're going to put a small tube down my nose and into my throat. Here's the diagram that came with my schedule:
I'm a bit nervous because they are going to do it while I'm awake, using numbing spray on my throat. I've been vomiting so violently and so much that I'm scared I'm going to vomit all over the person who is sticking that down my throat. The doctor wants to know if I'm vomiting up stomach acid. He has a suspicion that the acid is making the motility problems worse. I'll know more once the test is completed and I meet with him the day after. He mentioned stomach surgery before if the medication didn't work. I'm nervous but mainly I just want some answers so that I can go back to school in the fall. I can't take labs vomiting as much as I am now.
I took a picture of myself yesterday during a GP Attack that hasn't let up yet. So here is the Emo picture I took during my attack:
Overall, despite being ill, I've had a pretty good day full of good news. I'm very thankful for my friends and family. They lift me up when I feel discouraged. I did yesterday and everyone on Facebook tried to cheer me up - and it worked. I went to bed smiling.
My blog has had over 14,000 views! I can't thank you enough for reading. When I started this blog, I did it to keep track of my medical journey, tests, and hospital visits. I decided to write to help others through my own experiences - especially unnecessary tests. My blog has continued to evolve and I get messages telling me how much my blog has helped people. I want to say thank you. When I'm isolated at home because of GP, I can still feel productive and useful. I've always wanted to help others and I've always wanted to be a writer. I just never imagined that I would be a writer about a little understood and known illness.
Gastroparesis is not something to turn away from. This digestive disease doesn't care what you have planned for your life. GP does what it can to debilitate, destroy, torture, and wreak havoc in any way it can. http://www.GastroparesisAndME.com/ for medical links and personal stories, as well as support from others like Emily and her effort to support others with GP. Thank you Em for all you do!!!
It wasn't over yet. She contacted me and asked me if I could help out her organization. I was elated! Tanya does really great things in the Gastroparesis community like trying to get legislation passed for Gastroparesis, updated medical news, and trying to spread awareness. I agreed, because it's an honor to work with her. I am not an admin of her GASTROPARESIS AND ME FACEBOOK GROUP as well as an admin on GASTROPARESIS AND ME'S TWITTER ACCOUNT. I'm currently working on trying to get her more "likes" on Facebook. She had 200ish when I started working on her page a few hours ago and it just hit 245. I hope more people will like her page because what she does is very important.
She also linked my blog along with LaShelle's from her website (posted above in the second sentence). You can click Emily's Stomach on her website and it will take you directly to my blog. I am really excited about that! When I started my blog, I never knew it would be this popular! I'm amazed and dazzled by all of you who read it. You really help me in ways you might never know. <3 I'm also working with another group that will eventually become a non-profit for gastroparesis but I can't talk about it right now. I'll announce it when it finally happens and we can all celebrate together! I finally heard from the Mayo Clinic. They set up appointments for me the first week of May. On the first day that I'm there, they're going to put a small tube down my nose and into my throat. Here's the diagram that came with my schedule:
I'm a bit nervous because they are going to do it while I'm awake, using numbing spray on my throat. I've been vomiting so violently and so much that I'm scared I'm going to vomit all over the person who is sticking that down my throat. The doctor wants to know if I'm vomiting up stomach acid. He has a suspicion that the acid is making the motility problems worse. I'll know more once the test is completed and I meet with him the day after. He mentioned stomach surgery before if the medication didn't work. I'm nervous but mainly I just want some answers so that I can go back to school in the fall. I can't take labs vomiting as much as I am now.
I took a picture of myself yesterday during a GP Attack that hasn't let up yet. So here is the Emo picture I took during my attack:
Overall, despite being ill, I've had a pretty good day full of good news. I'm very thankful for my friends and family. They lift me up when I feel discouraged. I did yesterday and everyone on Facebook tried to cheer me up - and it worked. I went to bed smiling.
My blog has had over 14,000 views! I can't thank you enough for reading. When I started this blog, I did it to keep track of my medical journey, tests, and hospital visits. I decided to write to help others through my own experiences - especially unnecessary tests. My blog has continued to evolve and I get messages telling me how much my blog has helped people. I want to say thank you. When I'm isolated at home because of GP, I can still feel productive and useful. I've always wanted to help others and I've always wanted to be a writer. I just never imagined that I would be a writer about a little understood and known illness.
How to Make Good Decisions When You Have a Chronic Illness.
I found this article online and I thought it was worth sharing because it contains great information. I will edit it later with my own perspective added to it but thought it was important enough to share now.
How to Make Good Decisions When You Have a Chronic Illness
By Tom Robinson
Every day, all of us have lots of decisions to make. When you have a chronic illness, many of those decisions involve which providers to see, which treatments to try, and things like that. So they can affect whether you get better or worse and many other aspects of your quality of life. So you definitely want to make those decisions good ones.
But it is often hard to make good decisions, especially when you’re struggling with a chronic illness. However, no matter what you’re struggling with or what is going on in your life, it is still possible to make them. In this post, I’m going to share with you a way to do that which works well for me.
I have found, both in my own life and from coaching hundreds of people during the past 10 years, that one of the main things that makes it hard for us to make good decisions is our feelings, especially the unpleasant ones, such as sadness, rejection, fear, etc. We don’t like having those feelings, so without even thinking about it, we automatically make decisions that allows us to avoid them. But those automatic decisions can often have a negative effect on our health and our quality of life.
Knowing that, one of the ways I make better decisions is to think of my mind as a room with windows at both ends and think of my feelings as scents in the air that blows through it. Looking at feelings that way, I’ve found that if I just notice and observe them coming into my mind—the way I would notice and observe scents–without getting caught up in them, the window at the back of the room stays open, and they pass through. But when I get caught up in and dwell on those feelings, the window at the back of the room closes. And I end up making more and more bad decisions in an attempt to either avoid them or pretend they’re not there.
So as I’ve said, I make much better decisions when I just notice and observe my feelings. I know you will too. But there is another benefit—a very big one–that comes from allowing the unpleasant feelings to pass right through the room rather than reacting to them. The more we practice allowing those unpleasant feeling to pass right through, the more our ability to do so increases. I have found and seen that as it does, the more confident we become that we can handle the many challenges that we all experience in our lives. And with that confidence comes a deeper and deeper sense of peace.
The link to the article can be found HERE.
How to Make Good Decisions When You Have a Chronic Illness
By Tom Robinson
Every day, all of us have lots of decisions to make. When you have a chronic illness, many of those decisions involve which providers to see, which treatments to try, and things like that. So they can affect whether you get better or worse and many other aspects of your quality of life. So you definitely want to make those decisions good ones.
But it is often hard to make good decisions, especially when you’re struggling with a chronic illness. However, no matter what you’re struggling with or what is going on in your life, it is still possible to make them. In this post, I’m going to share with you a way to do that which works well for me.
I have found, both in my own life and from coaching hundreds of people during the past 10 years, that one of the main things that makes it hard for us to make good decisions is our feelings, especially the unpleasant ones, such as sadness, rejection, fear, etc. We don’t like having those feelings, so without even thinking about it, we automatically make decisions that allows us to avoid them. But those automatic decisions can often have a negative effect on our health and our quality of life.
Knowing that, one of the ways I make better decisions is to think of my mind as a room with windows at both ends and think of my feelings as scents in the air that blows through it. Looking at feelings that way, I’ve found that if I just notice and observe them coming into my mind—the way I would notice and observe scents–without getting caught up in them, the window at the back of the room stays open, and they pass through. But when I get caught up in and dwell on those feelings, the window at the back of the room closes. And I end up making more and more bad decisions in an attempt to either avoid them or pretend they’re not there.
So as I’ve said, I make much better decisions when I just notice and observe my feelings. I know you will too. But there is another benefit—a very big one–that comes from allowing the unpleasant feelings to pass right through the room rather than reacting to them. The more we practice allowing those unpleasant feeling to pass right through, the more our ability to do so increases. I have found and seen that as it does, the more confident we become that we can handle the many challenges that we all experience in our lives. And with that confidence comes a deeper and deeper sense of peace.
The link to the article can be found HERE.
Tuesday, April 16, 2013
How to Talk to Someone with a Chronic Illness - What You Should and Shouldn't Say
How to Talk to Someone with a Chronic Illness
Link: http://www.cnn.com/2012/09/11/health/invisible-chronic-illness
When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful.
Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships.
Here are some tips to keep in mind when talking to a friend living with an invisible illness.
What not to say:
You look so good!
Although this seems like a compliment, it's frustrating to an ill person. Although he or she may wish to look better than they feel, it seems as though you are saying, "You can't really be sick. You look fine to me." It invalidates a person's pain and symptoms.
Living with chronic illness: You need to just stop thinking about it and get busy.
True chronic illness doesn't heal itself because of distraction. Although some people may dwell on the details of their illness, it can seem emotionally overwhelming when your life revolves around new symptoms, medication side effects, infections from a lowered immune system and the illness itself. He or she would likely love to do something fun, but fatigue and pain prevent it.
You should try this new health supplement. It can't hurt.
Actually, the supplement may be the exact opposite of what our body needs, and "natural" doesn't always mean "safe." People have good intentions, but the chronically ill are doing their best to navigate the road of Western medicine, alternative treatments and finding the best medical team.
I wish I had the luxury of being sick instead of having to go to work every day.
Most people want to be able to work, and being physically unable to do so can cause great depression. Those with illness realize they don't have the burden of getting up and going to work each day, but they also have medical bills that they may never be able to pay off, as well as fears of not being able to support themselves.
They don't have as much free time as you think. The medical appointments, pain and paperwork take a large portion of time.
Don't give in. You need to fight this illness.
Those who are ill are fighting their illness every day they wake up and get our of bed. And on the days they can't get out of bed, they are determined to still have a life that is full of joys and memories, special events and loved ones. By taking medication or trying a new therapy, they are not "giving in."
Illness is caused by stress. You just need to learn to cope better.
While illness can be exaggerated by stress, stress rarely is the source of the genetics that cause illness. Those living with an illness are doing the very best they can to cope, but comments like the ones above make them, well, stressed.
Love during chronic illness
Here are some ideas on what to say:
I don't know what to say, but I care about you.
You don't have to try to fix it, and instead of saying, "I know exactly how you feel," an ill person would love it if you would just admit, "I don't have any idea what you are going through, but I am here if you need to vent."
Sometimes we just need one person who will listen and then we can move on to other topics.
If you need to cry, I've got plenty of tissues.
Every now and then we just need a good cry. Between the emotions certain medications cause, plus the stress on our marriages, careers and more, we occasionally need to cry.
Instead of being one more person who says, "Don't cry," tell your friend you will sit with her while she cries. It is an intimate gift that only true friends will offer.
I am going to the store tomorrow. What can I get for you?
If you are running some errands, let your friend know in advance so he or she can write a short list. Being able to pick up heavy things can also be helpful, like a gallon of milk or laundry detergent. Bring them into the house and ask if you can put them away. I know with my severe Gastroparesis right now, I can barely stand the sight of food, much less the smells. This would be a greatly appreciated gesture, more than you know.
You are going through so much, yet you still have such joy. How do you do that?
If you see a friend who is coping well with his or her physical limitations, ask yourself what you could learn.
Rather than saying, "Thank goodness that isn't me; I could never do that," ask them what motivates them when they are in pain, or how they prioritize to make the most of limited energy. Where do they find hope when the circumstances look bleak?
Those who live with illness learn a lot about the ups and down in life and would love the opportunity to share the wisdom they have discovered.
The link to the article is HERE.
Link: http://www.cnn.com/2012/09/11/health/invisible-chronic-illness
When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful.
Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships.
Here are some tips to keep in mind when talking to a friend living with an invisible illness.
What not to say:
You look so good!
Although this seems like a compliment, it's frustrating to an ill person. Although he or she may wish to look better than they feel, it seems as though you are saying, "You can't really be sick. You look fine to me." It invalidates a person's pain and symptoms.
Living with chronic illness: You need to just stop thinking about it and get busy.
True chronic illness doesn't heal itself because of distraction. Although some people may dwell on the details of their illness, it can seem emotionally overwhelming when your life revolves around new symptoms, medication side effects, infections from a lowered immune system and the illness itself. He or she would likely love to do something fun, but fatigue and pain prevent it.
You should try this new health supplement. It can't hurt.
Actually, the supplement may be the exact opposite of what our body needs, and "natural" doesn't always mean "safe." People have good intentions, but the chronically ill are doing their best to navigate the road of Western medicine, alternative treatments and finding the best medical team.
I wish I had the luxury of being sick instead of having to go to work every day.
Most people want to be able to work, and being physically unable to do so can cause great depression. Those with illness realize they don't have the burden of getting up and going to work each day, but they also have medical bills that they may never be able to pay off, as well as fears of not being able to support themselves.
They don't have as much free time as you think. The medical appointments, pain and paperwork take a large portion of time.
Don't give in. You need to fight this illness.
Those who are ill are fighting their illness every day they wake up and get our of bed. And on the days they can't get out of bed, they are determined to still have a life that is full of joys and memories, special events and loved ones. By taking medication or trying a new therapy, they are not "giving in."
Illness is caused by stress. You just need to learn to cope better.
While illness can be exaggerated by stress, stress rarely is the source of the genetics that cause illness. Those living with an illness are doing the very best they can to cope, but comments like the ones above make them, well, stressed.
Love during chronic illness
Here are some ideas on what to say:
I don't know what to say, but I care about you.
You don't have to try to fix it, and instead of saying, "I know exactly how you feel," an ill person would love it if you would just admit, "I don't have any idea what you are going through, but I am here if you need to vent."
Sometimes we just need one person who will listen and then we can move on to other topics.
If you need to cry, I've got plenty of tissues.
Every now and then we just need a good cry. Between the emotions certain medications cause, plus the stress on our marriages, careers and more, we occasionally need to cry.
Instead of being one more person who says, "Don't cry," tell your friend you will sit with her while she cries. It is an intimate gift that only true friends will offer.
I am going to the store tomorrow. What can I get for you?
If you are running some errands, let your friend know in advance so he or she can write a short list. Being able to pick up heavy things can also be helpful, like a gallon of milk or laundry detergent. Bring them into the house and ask if you can put them away. I know with my severe Gastroparesis right now, I can barely stand the sight of food, much less the smells. This would be a greatly appreciated gesture, more than you know.
You are going through so much, yet you still have such joy. How do you do that?
If you see a friend who is coping well with his or her physical limitations, ask yourself what you could learn.
Rather than saying, "Thank goodness that isn't me; I could never do that," ask them what motivates them when they are in pain, or how they prioritize to make the most of limited energy. Where do they find hope when the circumstances look bleak?
Those who live with illness learn a lot about the ups and down in life and would love the opportunity to share the wisdom they have discovered.
The link to the article is HERE.
Saturday, April 13, 2013
IBS Specialist or Gastroenterologist - What's the Difference?
IBS Specialist or Gastroenterologist: What’s the Difference?
**note: I wanted to thank Melissa "Missy" Culp for finding these articles and for asking intriguing questions on the Gastroparesis Facebook Page. She was my inspiration for my article, so I would like to name her a co-author.
There are IBS Specialists and there are Gastroenterologists.
IBS specialists are experts in IRRITABLE BOWEL SYNDROME (IBS). A gastroenterologist may diagnose IBS, but that will only tell you what you already know, that your bowel irritates you.
To the IBS specialist the label of IBS only serves as a starting point for further investigation, nothing more. The IBS specialist focuses on assessing and diagnosing the cause of your digestive problems, not on the gross structural integrity of the digestive tract. Rather than focusing on the patients symptoms, or simply treating the symptoms, the IBS specialist is devoted to identifying the condition or conditions in the patient that are causing the symptoms.
What Exactly Does a Gastroenterologist Do?
People often make assumptions about medical specialists and their areas of expertise. This is certainly true with gastroenterology, where many people assume that gastroenterologists are experts in all things related to the digestive tract.
Gastroenterologists are experts in diseases of the digestive tract, not syndromes or symptoms. While Gastroenterologists do primarily pay attention to the digestive tract, there are some surprising gaps in their training on the science of digestion. Gastroenterologists primarily focus on performing colonoscopies and upper endoscopies.
They may also do other imaging work of the GI tract, such as an ultrasound, CT scan,MRI, x-rays, and even “pill cameras.” And they may perform studies that assess the motility of the digestive tract. Therefore, if you go to a gastroenterologist your diagnosis will be based on this testing.
Gastroenterology is primarily a specialty in assessing the structure of the digestive tract. Gastroenterologists are focused on diagnosing ulcers, polyps, cancers, and other physically apparent abnormalities of the digestive tract. Surprisingly, they do not have training in nutrition or most reactions to foods. And though the digestive tract is the single most concentrated area of immune activity, gastroenterologists have no special training in immunology.
What Does an IBS Specialist Do?
There are literally hundreds of different causes of IBS and the digestive problems associated with IBS. An IBS specialist does not have any idea about how they will treat an IBS patient when they first meet that patient. Patients with identical symptoms may have radically different causes for those symptoms. An IBS specialist focuses on the detective work required to develop the proper treatment plan for each unique patient.
This process involves a detailed evaluation of how the body is responding to the foods in the diet (food allergies, intolerances, and sensitivities), and a thorough assessment of the profound ecosystem (including probiotics, yeast, bad bacteria, and parasites) that is contained within the digestive tract. It may also involve evaluating enzyme production, acid production, and the overall functioning of the digestive tract.
IBS specialists do not do what gastroenterologist do, and gastroenterologists do not do what IBS specialists do. These are completely different specialties. There is only a very tiny amount of overlap with regard to stool testing. But even this is extremely minor as the IBS specialist utilizes much more advanced stool analyses.
If you have IBS and continue to see gastroenterologists, then you will continue to get the same kind of testing and treatment that you’ve always received, even if you go to the Mayo Clinic, or the Cleveland Clinic, or any other big name medical facility or highly regarded expert – because they have a “standard of care” that recommends limiting testing. If that hasn’t helped, or you’d simply like to begin your journey with a different approach, then you need to see an IBS specialist. Your experience will be very different, which makes it far more likely that the outcome will be very different.
If you suffer from Irritable Bowel Syndrome, you need an IBS specialist. The link to the article can be found HERE.
My friend Melissa, suggested to me, that it would idea to follow a FODMAP DIET. The article about the Fodmap Diet says,
"The FODMAP theory holds that consuming foods high in FODMAPs results in increased volume of liquid and gas in the small and large intestine, resulting in distention and symptoms such as abdominal pain and gas and bloating. The theory proposes that following a low FODMAP diet should result in a decrease in digestive symptoms. The theory further holds that there is a cumulative effect of these foods on symptoms. In other words, eating foods with varying FODMAP values at the same time will add up, resulting in symptoms that you might not experience if you ate the food in isolation. This might explain the mixed results of studies that have evaluated the effects of fructose and lactose, two types of carbohydrates, on IBS. Ongoing research is being conducted as to the accuracy of the FODMAP theory and the effectiveness of the diet for IBS. Research into its effectiveness for IBS is at a very preliminary stage and it is unknown at this point if following such a diet would be safe for your health over the long term. As with any new treatment or dietary approach, it is always best to discuss the issue with your own personal physician."
Common High FODMAP Foods for IBS:
Fruits:
Apples
Apricots
Cherries
Mango
Pears
Nectarines
Peaches
Pears
Plums and prunes
Watermelon
High concentration of fructose from canned fruit, dried fruit or fruit juice
Grains
Level of FODMAPs is increased when these foods are eaten in large amounts:
Rye
Wheat
Lactose-Containing Foods
Custard
Ice cream
Margarine
Milk (cow, goat, sheep)
Soft cheese, including cottage cheese and ricotta
Yogurt
Legumes
Baked beans
Chickpeas
Lentils
Kidney beans
Sweeteners
Fructose
High fructose corn syrup
Isomalt
Maltitol
Mannitol
Sorbitol
Xylitol
Vegetables
Artichokes
Asparagus
Avocado
Beets
Broccoli
Brussel sprouts
Cabbage
Cauliflower
Garlic (with large consumption)
Fennel
Leeks
Mushrooms
Okra
Onions
Peas
Radiccio lettuce
Scallions (white parts)
Shallots
Sugar snap peas
Snow peas
Common Low FODMAP Foods
Fruits
Banana
Blueberry
Grapefruit
Grapes
Honeydew melon
Kiwi
Lemon
Lime
Mandarine oranges
Orange
Raspberry
Strawberry
Sweeteners
Artificial sweeteners that do not end in -ol
Glucose
Maple syrup
Sugar (sucrose)
Lactose Alternatives
Butter
Hard cheese, brie and camembert
Lactose-free products, such as lactose-free ice cream and yogurt
Gelato
Rice milk
Sorbet
Vegetables
Bell peppers
Bok choy
Carrots
Celery
Corn
Eggplant
Green beans
Lettuce
Parsnip
Scallions (green parts only)
Sweet potato
Tomato
Grains
Oats
Gluten-free products
Spelt products
Now I want to get into SIBO. If you have Gastroparesis, SIBO is a legit concern. Crystal Saltrelli wrote an article about SIBO not too long ago. Here is an exert of her article about SIBO if you would like to read it,
"What is SIBO? SIBO stands for small intestinal bacterial overgrowth. It’s also sometimes called small bowel bacterial overgrowth or SIBO. It all means the same thing: there are bacteria in your small intestine that are not supposed to be there. What causes SIBO? One of the biggest risk factors for SIBO is… slow gut motility. Muscular contractions within the gut are supposed to sweep things, both food and bacteria, through the GI tract. When it doesn’t, bacteria can take hold and multiply in places where they don’t belong. This is bad news for GPers, of course, and even worse if you’re chronically constipated, as bacteria may migrate upward from the colon to the small intestine, as well. What’s more, it’s thought that protein pump inhibitors (PPIs), which many GPers are immediately prescribed, may encourage the growth of bacteria by limiting (or even eliminating) the anti-bacterial effects of acid in the stomach."
You can find Crystal's Article by clicking HERE.
The link to the article can be found >HERE.
What Can be Done when Gastroparesis Treatments Don’t Seem to Help
What can be done when Gastroparesis Treatments don’t Seem to Help
Many people with gastroparesis will respond to medical management with some dietary modification. However, medication failures or side effects are common. Many physicians have little knowledge or experience with treating gastroparesis.
Some practical things to consider when treatment does not seem to help include:
• Check the diagnosis
• The cause matters
• Review the diet
• Consider other medications
• Treat the pain
• Manage the psychosocial aspects
• Know when to consider surgery
• Be persistent and be careful
Check the Diagnosis
Nausea is the hallmark symptom of gastroparesis. Other medical problems should be considered when nausea is not a prominent symptom.
Dyspepsia is characterized by pain/burning in the mid-upper abdomen and/or bothersome fullness following a normal sized meal and/or inability to complete a meal (early satiety). People with esophageal diseases such as GERD or achalasia can have abnormal gastric emptying studies.
For more about these conditions, please click in the links below in all caps and in bold:
ACHALASIA
CYCLIC VOMITING SYNDROME
DYSPESIA
GERD
INTESTINAL PSEUDO-OBSTRUCTION
RUMINATION SYNDROME (as a side note, I have this as well and the doctor told me to do DIAPHRAGMATIC BREATHING to control it).
Nausea may be a secondary symptom in people with countless other medical problems. Cyclic vomiting syndrome (CVS) is a disorder where otherwise completely healthy people have stereotypical intermittent episodes of severe nausea, vomiting, and abdominal pain. People with intestinal pseudo obstruction have prominent symptoms of bloating and severe constipation. Rumination syndrome is characterized by constant regurgitation and either vomiting or re-swallowing food or drink soon after eating. Small bowel obstruction should be considered in people who have had previous abdominal surgery.
The Cause of the Gastroparesis Matters
In diabetic gastroparesis it is important to control the blood sugar, as intestinal motility is impaired when the blood sugar is elevated. Intravenous erythromycin should be considered in hospitalized patients with diabetes. Unfortunately, erythromycin seems to be beneficial for only a few days at a time.
Patients with idiopathic post-viral gastroparesis usually improve over the course of time, ranging from several months to one or two years. During that period it is important to consider that any irreversible surgical procedures not be performed in these patients to treat idiopathic post-viral gastroparesis.
Identifying and treating any underlying systemic disorder may rarely help, and is worth the effort.
Review the Diet
Many physicians tend to skip dietary recommendations, although it is the area of most interest to patients. It is important to review the low-fat, low-fiber diet and to discuss nutritional supplements.
Rarely, feeding tubes and total parenteral nutrition are necessary. Enteral feeding tubes should be placed in the jejunum, not the stomach. These should not be considered early in the course of the patient’s illness, as they are not without risk. They must be carefully managed to avoid serious complications like infection.
You can review the Mayo diet and recipes that are GP friendly in another one of my articles by clicking HERE.
Consider Other Medications
The utility of the prokinetic agents is often limited by their side effects. There is a good bit of anecdotal evidence that medications like amitriptyline or nortriptyline can decrease the sensation of nausea. The typical dose is 25–50 mg at bedtime, which is well below the dose that is required to treat depression. A doctor can check blood levels, and modify the dose accordingly. Side effects, including blurry vision, urinary retention, sleepiness and constipation are uncommon because of the low dose.
Bacterial overgrowth (SIBO) may accompany gastroparesis. The main symptom is bloating. Judicious use of antibiotics and probiotics may be helpful in the management of these symptoms.
It is difficult for patients with nausea and vomiting to tolerate oral medications. Obviously, hospitalized patients should receive intravenous medication. Outpatients may do better with medication that dissolves in the mouth.
Reports from highly specialized (tertiary) medical centers that often see people with severe gastroparesis suggest that bloating is a common symptom. Bloating impairs quality of life. Bloating severity appears related to intensity of other gastroparesis symptoms but is not affected by gastric emptying rates. Antiemetics, probiotics, and antidepressants with significant norepinephrine reuptake inhibitor activity may help.
Here are some natural remedies recommended by friends:
This one is for gas and bloating called GAIA.
The second one is for PEPPERMINT OIL. It combats indigestion, bloating, gas, IBS, and skin irritations. I usually drop a few drops into my tub and soak in it as well.
Leanne suggests IBEROGAST as a natural remedy to help with Gastroparesis. You can find it on Amazon HERE.
Melony suggests ACUPUNCTURE. She writes, “I had been using acupuncture for treating my Gastroparesis for about a 6 month period and received great results, it requires twice weekly visits usually, unfortunately it is something that must be continued to continue getting results. Once you stop treatment you will no longer see the benefits. Also insurance usually will not cover it, the clinic I was going to was about $50 a visit. Acupuncture involves the insertion of extremely thin needles (about half the size of a strand of hair) through your skin at strategic points on your body (usually back stomach arm chest and top of feet however every acupuncturist might do it slightly differently, you then lay on a bed after needles have been inserted, they remain in and you are covered by a thin foil like blanket, relaxing sounds will be put on a radio and you lay there for about half an hour) Acupuncture is a key component of Traditional Chinese medicine, a few small studies have been done regarding the effectiveness of acupuncture for GP. One small study published in the Journal of Traditional Chinese Medicine in 2004 looked at the effects of acupuncture on the symptoms of Gastroparesis in thirty-five people. One group received only acupuncture, a second group received a Gastroparesis medication called domperidone, and a third group received no treatment. The results were encouraging. The group who received acupuncture experienced more Gastroparesis relief than either of the other two groups. Even though domperidone is one of the more effective medications for treating Gastroparesis, in this small study, acupuncture outperformed it. I agree with those results as it was the best I had felt since getting sick, it is not for everyone due to the price (that is also why I stopped) but I feel it is worth looking into for anyone not finding good success with managing their GP!”
Margaret writes, "I buy over the counter NAUZENE CHEWABLES for Nausea and they are awesome. They work for me most of the time when I have nausea and are quick, usually work in less than 5 minutes. I have never had to go on a prescription medicine for nausea. They are cheap too, about, $5.50 for a box of forty. Also, I like CRYSTALLIZED GINGER CHEWS. They are good for stomach upset and nausea. Love ginger tea too. I drink about two cups everyday."
Annie writes, "A couple of things my daughter Faith does: DGL from a health food store is good at keeping mild acid reflux under control and it doesn't slow down motility. DOTERRA has a couple of essential oils that are helpful: Deep Blue for pain and Frankincense for nausea. She mixes a drop or two with coconut oil and massages them where ever needed. Though it's not a medicine per se, Faith also uses MEDITATION to help with the pain."
Personally, I recommend QUEASE EASE and PREGGIE DROPS. Quease Ease is a blend of peppermint ginger lavender spearmint oils. You inhale it and the feeling of nausea subsides. It was recommended to me by my good friend Melony and I carry it with me everywhere. The Preggie Drops are Kosher, Vegan, and Gluten Free. They help morning sickness and are given to cancer patients to ease their nausea. In addition, the Preggie Drops alleviate dry mouth and provide quick calories and energy when you need it.
Shannon writes, "Pro-biotics, Super Digest away, Green Smoothies, and Epsom Salts baths, to deal with the constipation drink a glass of warm water with Epsom salts, also ice down the stomach for pain, Earth Fares Stomach comfort tea for the cramping and pain. It has chamomile, licorice and ginger. Lemon water to help with digestion of foods. Just a few that I have used and truly work for me."
Sabrina writes, "SUPER PAPAYA ENZYME for motility, PROBIOTICS, and HYPERICUM for pain cramping. I also take sublingual B12 complex, vitamin gummys [note, you may want to use chewables like Flinstone's vitamins because gummy vitamins have a hard time with digestion] and have tried ginger tea."
Julie writes,"Sipping dill pickle juice will fix the nausea. Also, LEMON MINT EMETROL is also a miracle worker for nausea."
Mary Ann writes, "I recommend ALL-ZYME. This focused formula delivers the plant-sourced enzymes amylase, protease, lipase, and cellulose to aid in the digestion of protein, carbohydrates, fats and dietary fiber, especially for those with diets high in processed or refined foods. All-Zyme Double Strength™ can also support occasional indigestion, gas, bloating, and constipation."
Kristin writes, “I use Coke-a-Cola for my upset tummy. It helps me after I have a really bad vomiting session so that I won't have a repeat attack.”
Jennifer writes, "I take DIGESTIVE ADVANTAGE probiotics."
Kristen writes, "I take ginger and peppermint for nausea (I usually do this in tea form). Fever-few, turmeric, devil's claw, St. John's wart, and Valerian root for pain. Fennel, ginger, parsley, garlic [side note, garlic is against the Mayo GP Diet List, so be careful], dandelion, and dill pickles work for gas and bloating, believe it or not."
Millie writes, "Epsom Salt Baths & Castor Oil Packs!"
Wyld Heart writes, "Sniffing spearmint helps my nausea sometimes when the rest of the house is cooking something nasty and smelly, like REAL food."
Shannon (Page Creator of One Million Likes for Gastroparesis) writes, "Pro-biotics, Super Digest away, Green Smoothies, and Epsom Salts baths, to deal with the constipation drink a glass of warm water with epsom salts, also ice down the stomach for pain, Earth Fares Stomach comfort tea for the cramping and pain. It has chamomile, licorice and ginger. Lemon water to help with digestion of foods. Just a few that I have used and truly work for me."
Windy writes, "Crystallized ginger is the only thing I use."
Pauline writes, "Snap Windy I only use ginger as well, but I also don't think I have it as severely as some others. Before I discovered ginger I would make myself throw up to empty my stomach and have a really warm shower to deal with it. Within an hour of this I would usually feel hungry again, but for the next two days I would only eat smaller amounts of really safe foods. Now if I have a slight feeling in the GP direction or have had a meal I'm worried about I'll take some ginger and it almost always works."
This is a medication that has been subscribed by GI doctors all over the US but you should research the side effects first before you take it. The medication is Domperidone and I will have to keep updating the information on it because it constantly changes. As it stands right now,
Treat the Pain
If you have never seen a Gastroparesis Attack, then check out my friend Tanya's VIDEO. It's something all of us with Gastroparesis suffer with on a day to day basis.
Abdominal pain may be overlooked in gastroparesis. However, controlling abdominal pain can be the key to success in the management of many patients. Pain does not correlate with gastric emptying. Non-steroidal anti-inflammatory drugs (NSAIDs) may help. Low dose tricyclic medications, such as amitriptyline, nortriptyline, and desipramine, have been shown to reduce pain in other functional GI conditions and may reduce pain associated with gastroparesis. Other drugs found useful in treating neuropathic pain may be tried. Opiates, or narcotics, should be avoided.
Manage the Psychosocial Aspects
Not surprisingly, anxiety and depression are very common in people with chronic debilitating illnesses. The physician and staff need to have compassion and patience. If necessary, psychological consultation should be considered. Low dose tricyclic medications do not treat anxiety or depression. Real emotional disorders require real psychological treatment. Appropriate treatment can lead to improvement in the GI symptoms.
Patients with an eating disorder may be given a diagnosis of gastroparesis. However, it is probably more common for patients with gastroparesis to be accused of having an eating disorder, rather than actually having one.
When to Consider Surgery
Patients failing medical therapy should have a thorough evaluation before considering surgical therapy. Surgical procedures all have inherent risks that need to be carefully weighed and understood. Most surgical treatments are irreversible, but work in carefully selected patients, having the correct surgery done, by an experienced and accomplished surgeon.
Be Persistent and Be Careful!
Most medications work only less than half of the time. Nonetheless, most people will respond to some therapy. If a medication causes side effects, consider a lower dose. If it doesn’t work, try something else. Combining medications can be helpful. Keep hydrated and as nutritionally fit as possible.
When treatment is failing and there appear to be no other options – whether you are the patient or the physician – get another opinion. Persistence pays off, as most people with gastroparesis ultimately will do well.
Source of the Article is HERE.
Many people with gastroparesis will respond to medical management with some dietary modification. However, medication failures or side effects are common. Many physicians have little knowledge or experience with treating gastroparesis.
Some practical things to consider when treatment does not seem to help include:
• Check the diagnosis
• The cause matters
• Review the diet
• Consider other medications
• Treat the pain
• Manage the psychosocial aspects
• Know when to consider surgery
• Be persistent and be careful
Check the Diagnosis
Nausea is the hallmark symptom of gastroparesis. Other medical problems should be considered when nausea is not a prominent symptom.
Dyspepsia is characterized by pain/burning in the mid-upper abdomen and/or bothersome fullness following a normal sized meal and/or inability to complete a meal (early satiety). People with esophageal diseases such as GERD or achalasia can have abnormal gastric emptying studies.
For more about these conditions, please click in the links below in all caps and in bold:
ACHALASIA
CYCLIC VOMITING SYNDROME
DYSPESIA
GERD
INTESTINAL PSEUDO-OBSTRUCTION
RUMINATION SYNDROME (as a side note, I have this as well and the doctor told me to do DIAPHRAGMATIC BREATHING to control it).
Nausea may be a secondary symptom in people with countless other medical problems. Cyclic vomiting syndrome (CVS) is a disorder where otherwise completely healthy people have stereotypical intermittent episodes of severe nausea, vomiting, and abdominal pain. People with intestinal pseudo obstruction have prominent symptoms of bloating and severe constipation. Rumination syndrome is characterized by constant regurgitation and either vomiting or re-swallowing food or drink soon after eating. Small bowel obstruction should be considered in people who have had previous abdominal surgery.
The Cause of the Gastroparesis Matters
In diabetic gastroparesis it is important to control the blood sugar, as intestinal motility is impaired when the blood sugar is elevated. Intravenous erythromycin should be considered in hospitalized patients with diabetes. Unfortunately, erythromycin seems to be beneficial for only a few days at a time.
Patients with idiopathic post-viral gastroparesis usually improve over the course of time, ranging from several months to one or two years. During that period it is important to consider that any irreversible surgical procedures not be performed in these patients to treat idiopathic post-viral gastroparesis.
Identifying and treating any underlying systemic disorder may rarely help, and is worth the effort.
Review the Diet
Many physicians tend to skip dietary recommendations, although it is the area of most interest to patients. It is important to review the low-fat, low-fiber diet and to discuss nutritional supplements.
Rarely, feeding tubes and total parenteral nutrition are necessary. Enteral feeding tubes should be placed in the jejunum, not the stomach. These should not be considered early in the course of the patient’s illness, as they are not without risk. They must be carefully managed to avoid serious complications like infection.
You can review the Mayo diet and recipes that are GP friendly in another one of my articles by clicking HERE.
Consider Other Medications
The utility of the prokinetic agents is often limited by their side effects. There is a good bit of anecdotal evidence that medications like amitriptyline or nortriptyline can decrease the sensation of nausea. The typical dose is 25–50 mg at bedtime, which is well below the dose that is required to treat depression. A doctor can check blood levels, and modify the dose accordingly. Side effects, including blurry vision, urinary retention, sleepiness and constipation are uncommon because of the low dose.
Bacterial overgrowth (SIBO) may accompany gastroparesis. The main symptom is bloating. Judicious use of antibiotics and probiotics may be helpful in the management of these symptoms.
It is difficult for patients with nausea and vomiting to tolerate oral medications. Obviously, hospitalized patients should receive intravenous medication. Outpatients may do better with medication that dissolves in the mouth.
Reports from highly specialized (tertiary) medical centers that often see people with severe gastroparesis suggest that bloating is a common symptom. Bloating impairs quality of life. Bloating severity appears related to intensity of other gastroparesis symptoms but is not affected by gastric emptying rates. Antiemetics, probiotics, and antidepressants with significant norepinephrine reuptake inhibitor activity may help.
Here are some natural remedies recommended by friends:
This one is for gas and bloating called GAIA.
The second one is for PEPPERMINT OIL. It combats indigestion, bloating, gas, IBS, and skin irritations. I usually drop a few drops into my tub and soak in it as well.
Leanne suggests IBEROGAST as a natural remedy to help with Gastroparesis. You can find it on Amazon HERE.
Melony suggests ACUPUNCTURE. She writes, “I had been using acupuncture for treating my Gastroparesis for about a 6 month period and received great results, it requires twice weekly visits usually, unfortunately it is something that must be continued to continue getting results. Once you stop treatment you will no longer see the benefits. Also insurance usually will not cover it, the clinic I was going to was about $50 a visit. Acupuncture involves the insertion of extremely thin needles (about half the size of a strand of hair) through your skin at strategic points on your body (usually back stomach arm chest and top of feet however every acupuncturist might do it slightly differently, you then lay on a bed after needles have been inserted, they remain in and you are covered by a thin foil like blanket, relaxing sounds will be put on a radio and you lay there for about half an hour) Acupuncture is a key component of Traditional Chinese medicine, a few small studies have been done regarding the effectiveness of acupuncture for GP. One small study published in the Journal of Traditional Chinese Medicine in 2004 looked at the effects of acupuncture on the symptoms of Gastroparesis in thirty-five people. One group received only acupuncture, a second group received a Gastroparesis medication called domperidone, and a third group received no treatment. The results were encouraging. The group who received acupuncture experienced more Gastroparesis relief than either of the other two groups. Even though domperidone is one of the more effective medications for treating Gastroparesis, in this small study, acupuncture outperformed it. I agree with those results as it was the best I had felt since getting sick, it is not for everyone due to the price (that is also why I stopped) but I feel it is worth looking into for anyone not finding good success with managing their GP!”
Margaret writes, "I buy over the counter NAUZENE CHEWABLES for Nausea and they are awesome. They work for me most of the time when I have nausea and are quick, usually work in less than 5 minutes. I have never had to go on a prescription medicine for nausea. They are cheap too, about, $5.50 for a box of forty. Also, I like CRYSTALLIZED GINGER CHEWS. They are good for stomach upset and nausea. Love ginger tea too. I drink about two cups everyday."
Annie writes, "A couple of things my daughter Faith does: DGL from a health food store is good at keeping mild acid reflux under control and it doesn't slow down motility. DOTERRA has a couple of essential oils that are helpful: Deep Blue for pain and Frankincense for nausea. She mixes a drop or two with coconut oil and massages them where ever needed. Though it's not a medicine per se, Faith also uses MEDITATION to help with the pain."
Personally, I recommend QUEASE EASE and PREGGIE DROPS. Quease Ease is a blend of peppermint ginger lavender spearmint oils. You inhale it and the feeling of nausea subsides. It was recommended to me by my good friend Melony and I carry it with me everywhere. The Preggie Drops are Kosher, Vegan, and Gluten Free. They help morning sickness and are given to cancer patients to ease their nausea. In addition, the Preggie Drops alleviate dry mouth and provide quick calories and energy when you need it.
Shannon writes, "Pro-biotics, Super Digest away, Green Smoothies, and Epsom Salts baths, to deal with the constipation drink a glass of warm water with Epsom salts, also ice down the stomach for pain, Earth Fares Stomach comfort tea for the cramping and pain. It has chamomile, licorice and ginger. Lemon water to help with digestion of foods. Just a few that I have used and truly work for me."
Sabrina writes, "SUPER PAPAYA ENZYME for motility, PROBIOTICS, and HYPERICUM for pain cramping. I also take sublingual B12 complex, vitamin gummys [note, you may want to use chewables like Flinstone's vitamins because gummy vitamins have a hard time with digestion] and have tried ginger tea."
Julie writes,"Sipping dill pickle juice will fix the nausea. Also, LEMON MINT EMETROL is also a miracle worker for nausea."
Mary Ann writes, "I recommend ALL-ZYME. This focused formula delivers the plant-sourced enzymes amylase, protease, lipase, and cellulose to aid in the digestion of protein, carbohydrates, fats and dietary fiber, especially for those with diets high in processed or refined foods. All-Zyme Double Strength™ can also support occasional indigestion, gas, bloating, and constipation."
Kristin writes, “I use Coke-a-Cola for my upset tummy. It helps me after I have a really bad vomiting session so that I won't have a repeat attack.”
Jennifer writes, "I take DIGESTIVE ADVANTAGE probiotics."
Kristen writes, "I take ginger and peppermint for nausea (I usually do this in tea form). Fever-few, turmeric, devil's claw, St. John's wart, and Valerian root for pain. Fennel, ginger, parsley, garlic [side note, garlic is against the Mayo GP Diet List, so be careful], dandelion, and dill pickles work for gas and bloating, believe it or not."
Millie writes, "Epsom Salt Baths & Castor Oil Packs!"
Wyld Heart writes, "Sniffing spearmint helps my nausea sometimes when the rest of the house is cooking something nasty and smelly, like REAL food."
Shannon (Page Creator of One Million Likes for Gastroparesis) writes, "Pro-biotics, Super Digest away, Green Smoothies, and Epsom Salts baths, to deal with the constipation drink a glass of warm water with epsom salts, also ice down the stomach for pain, Earth Fares Stomach comfort tea for the cramping and pain. It has chamomile, licorice and ginger. Lemon water to help with digestion of foods. Just a few that I have used and truly work for me."
Windy writes, "Crystallized ginger is the only thing I use."
Pauline writes, "Snap Windy I only use ginger as well, but I also don't think I have it as severely as some others. Before I discovered ginger I would make myself throw up to empty my stomach and have a really warm shower to deal with it. Within an hour of this I would usually feel hungry again, but for the next two days I would only eat smaller amounts of really safe foods. Now if I have a slight feeling in the GP direction or have had a meal I'm worried about I'll take some ginger and it almost always works."
This is a medication that has been subscribed by GI doctors all over the US but you should research the side effects first before you take it. The medication is Domperidone and I will have to keep updating the information on it because it constantly changes. As it stands right now,
"WHAT THE FDA SAYS ABOUT DOMPERIDONE
Domperidone – How to Obtain
Domperidone is not currently a legally marketed human drug and it is not approved for sale in the U.S. On June 7, 2004, FDA issued a public warning that distributing any domperidone-containing products is illegal. FDA also issued an Import Alert instructing FDA field personnel to detain shipments of finished drug products and bulk ingredients containing domperidone, and refuse admission into the US. FDA took this action because of the concern about the potential serious health risks associated with the use of domperidone by lactating women to enhance breast milk production.

The risks of cardiac arrhythmias, cardiac arrest, and sudden death outweigh any potential benefit of domperidone in healthy lactating women. In addition, the concurrent use of certain commonly used drugs, such as erythromycin, could raise blood levels of domperidone and further increase the risk of serious adverse cardiac outcomes. In several countries where the oral form of domperidone is marketed, the drug's labeling specifically warns that nursing mothers should not use it. Furthermore, domperidone is excreted in breast milk, exposing a breastfeeding infant to unknown risks. However, FDA continues to recognize that there are some patients with severe gastrointestinal motility disorders that are difficult to manage with available therapy for whom domperidone’s potential benefits may justify its potential risks.
While there are currently no pharmacies that are authorized to compound domperidone under the Expanded Access program, domperidone may be obtained under certain circumstances, as described below.
Submit an IND
Patients 12 years of age and older with certain gastrointestinal (GI) conditions may be able to receive treatment with domperidone through an expanded access investigational new drug application (IND). These conditions include gastroesophageal reflux disease with upper GI symptoms, gastroparesis, and chronic constipation. Patients who are eligible to receive domperidone have generally failed standard therapies. Expanded access INDs facilitate access to investigational drugs (such as domperidone) for patients with serious diseases or conditions for which there is no comparable or satisfactory alternative therapy to diagnose, monitor, or treat the patient’s disease or condition. In addition to other applicable requirements, an IND must be in effect prior to the importation, interstate shipment, and administration of domperidone.
Contact Us
Physicians interested in submitting an expanded access IND for domperidone can obtain more information by contacting DDI (below) to request the Domperidone Packet which contains the required forms, instructions, and answers to most questions.
Division of Drug Information (DDI):
toll free at:
(855) 543-3784 FREE or
(301) 796-3400
email: druginfo@fda.hhs.gov
http://www.fda.gov/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/Appro valApplications/InvestigationalNewDrugINDApplication/ucm368736.htm
FDA Talk Paper: FDA Warns Against Women Using
Unapproved Drug, Domperidone, to Increase Milk
Production
June 7, 2004
In response to reports that women may be using an unapproved drug, domperidone, to increase milk production (lactation), the Food and Drug Administration (FDA) is warning breastfeeding women not to use this product because of safety concerns. Today, FDA also issued six letters to pharmacies that compound products containing domperidone and firms that supply domperidone for use in compounding.
The Agency also is issuing an Import Alert which alerts FDA field personnel to be on the lookout for attempts to import this drug so that it can be detained and refused admission into the U.S. if appropriate.
FDA took these actions because it has become aware that some women who breastfeed and/or pump breast milk are purchasing this drug, domperidone, from compounding pharmacies and from sources in foreign countries to increase breast milk production. Domperidone may increase the secretion of prolactin, a hormone that is needed for lactation.
Although domperidone is approved in several countries outside the U.S. to treat certain gastric disorders, it is not approved in any country, including the U.S., for enhancing breast milk production in lactating women and is also not approved in the U.S. for any indication.
The agency is concerned with the potential public health risks associated with domperidone. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest, and sudden death in patients receiving an intravenous form of domperidone that has been withdrawn from marketing in a number of countries. In several countries where the oral form of domperidone continues to be marketed, labels for the product contain specific warnings against use of domperidone by breastfeeding women and note that the drug is excreted in breast milk that could expose a breastfeeding infant to unknown risks. Because of the possibility of serious adverse effects, FDA recommends that breastfeeding women not use domperidone to increase milk production.
The FDA recognizes the immense health benefits that breast milk provides for a nursing infant and is taking these actions today not to discourage women from breastfeeding but rather to warn them not to use this particular drug while they are breastfeeding.
The letters issued by FDA today stated that all drug products containing domperidone (whether compounded or not) violate the Federal Food, Drug, and Cosmetic Act (the Act) because they are unapproved new drugs and misbranded. In addition, distribution within the U.S., or importation of domperidone-containing products, violates the law. FDA informed the warning letter recipients that further violations of the Act may result in enforcement actions including seizure and injunction.
http://www.fda.gov/Drugs/DrugSafety/InformationbyDrugClass/ucm173886.htm"
Treat the Pain
If you have never seen a Gastroparesis Attack, then check out my friend Tanya's VIDEO. It's something all of us with Gastroparesis suffer with on a day to day basis.
Abdominal pain may be overlooked in gastroparesis. However, controlling abdominal pain can be the key to success in the management of many patients. Pain does not correlate with gastric emptying. Non-steroidal anti-inflammatory drugs (NSAIDs) may help. Low dose tricyclic medications, such as amitriptyline, nortriptyline, and desipramine, have been shown to reduce pain in other functional GI conditions and may reduce pain associated with gastroparesis. Other drugs found useful in treating neuropathic pain may be tried. Opiates, or narcotics, should be avoided.
Manage the Psychosocial Aspects
Not surprisingly, anxiety and depression are very common in people with chronic debilitating illnesses. The physician and staff need to have compassion and patience. If necessary, psychological consultation should be considered. Low dose tricyclic medications do not treat anxiety or depression. Real emotional disorders require real psychological treatment. Appropriate treatment can lead to improvement in the GI symptoms.
Patients with an eating disorder may be given a diagnosis of gastroparesis. However, it is probably more common for patients with gastroparesis to be accused of having an eating disorder, rather than actually having one.
When to Consider Surgery
Patients failing medical therapy should have a thorough evaluation before considering surgical therapy. Surgical procedures all have inherent risks that need to be carefully weighed and understood. Most surgical treatments are irreversible, but work in carefully selected patients, having the correct surgery done, by an experienced and accomplished surgeon.
Be Persistent and Be Careful!
Most medications work only less than half of the time. Nonetheless, most people will respond to some therapy. If a medication causes side effects, consider a lower dose. If it doesn’t work, try something else. Combining medications can be helpful. Keep hydrated and as nutritionally fit as possible.
When treatment is failing and there appear to be no other options – whether you are the patient or the physician – get another opinion. Persistence pays off, as most people with gastroparesis ultimately will do well.
Source of the Article is HERE.
Thursday, April 11, 2013
Resources for Help to Explain GP/DTP and/or a Chronic Illness to Family and Friends
I have noticed a trend in comments and questions asking how to go about explaining to people who might believe that GP/DTP is all in your head. I have some great resources to help you explain to others how you feel and to prove that you're not making it up.
The first is THE SPOON THEORY.. It's easier to explain to people when you use this method. It drives the point home. I've used this method myself and it's tried and true. The website that has all of the details is HERE.
Another resource I would recommend is GASTROPARESIS AND ME.. Tanya, the creator of the page, has posted a video showing her during a bad GP Attack that will bring tears to your eyes but it will help show people you love what you go through on a daily basis. She's big on raising awareness and passing legislation to bring funding to GP/DTP.
My blog contains lots of online resources and groups for GP that might help you. Additionally, there's an article I have in there entitled, "When Telling Someone They Look Good Becomes an Insult." The article can be found here: http://www.emilysstomach.com/2013/01/when-telling-someone-they-look-great.html There are a lot of articles that I've written that touch on this subject. They can be found here: http://www.emilysstomach.com/2017/11/information-to-help-newly-diagnosed-and.html along with other helpful information.
I started my blog to help my friends and family understand what I went through on a daily basis. I've written about my personal journey. I actually had a few friends come to me and apologize once they read what I was going through. You could always start writing about your experiences and share it with friends and family like I did. It's therapeutic and it helps.
There is a video that my friend Tanya recorded during her GP attack. If you have family or friends who think this is all in your head, show them THIS VIDEO.
Additionally, there is another video I would recommend that one of my friends with Gastroparesis made of her husband discussing his experience in dealing with his wife's illness. It's a touching video (it made me tear up) and probably will help others understand what it is like to be the loved one of a person suffering from Gastroparesis and how much of a struggle it is. Most importantly, though, that it shows that Gastroparesis is NOT in your head, or that you are making it up, or that it is something you can just bounce back from. The video can be found here: http://youtu.be/qNLc5wyE4Fc
There is a lot of self-doubt. When you are told constantly that your illness is in your head by doctors (who have the test results in front of them proving that you have gastroparesis but they don't want to deal with you because your case is too complicated - that's happened to me, not all doctors mind you, just some), your family tells you it's in your head, your spouse or partner doesn't believe you - I mean, it all adds up. You feel like you're going crazy and you start to doubt yourself when you are told this all of the time. It really messes with your head and leads to anxiety, which makes gastroparesis attacks (or flares, whatever you want to call them) happen. It hurts and you feel betrayed by your body, family, friends, doctors, etc. It just makes you frustrated and upset. But, you have to let go of the self doubt because YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE! You are a lot stronger than you think you are.
ALSO, IT IS NOT IN YOUR HEAD!
I want to make sure that you know that. There are support groups that can help give advice. My group is, Stronger than Gastroparesis (GP Warriors): http://www.facebook.com/groups/strongerthanGP/ You are NOT alone. Feel free to join to the group to ask the members in there how they've dealt with explaining things to their family and how they have let go of self doubt. We also have sister groups that can help you in addition to our main group above.
The first is THE SPOON THEORY.. It's easier to explain to people when you use this method. It drives the point home. I've used this method myself and it's tried and true. The website that has all of the details is HERE.
Another resource I would recommend is GASTROPARESIS AND ME.. Tanya, the creator of the page, has posted a video showing her during a bad GP Attack that will bring tears to your eyes but it will help show people you love what you go through on a daily basis. She's big on raising awareness and passing legislation to bring funding to GP/DTP.
My blog contains lots of online resources and groups for GP that might help you. Additionally, there's an article I have in there entitled, "When Telling Someone They Look Good Becomes an Insult." The article can be found here: http://www.emilysstomach.com/2013/01/when-telling-someone-they-look-great.html There are a lot of articles that I've written that touch on this subject. They can be found here: http://www.emilysstomach.com/2017/11/information-to-help-newly-diagnosed-and.html along with other helpful information.
I started my blog to help my friends and family understand what I went through on a daily basis. I've written about my personal journey. I actually had a few friends come to me and apologize once they read what I was going through. You could always start writing about your experiences and share it with friends and family like I did. It's therapeutic and it helps.
There is a video that my friend Tanya recorded during her GP attack. If you have family or friends who think this is all in your head, show them THIS VIDEO.
Additionally, there is another video I would recommend that one of my friends with Gastroparesis made of her husband discussing his experience in dealing with his wife's illness. It's a touching video (it made me tear up) and probably will help others understand what it is like to be the loved one of a person suffering from Gastroparesis and how much of a struggle it is. Most importantly, though, that it shows that Gastroparesis is NOT in your head, or that you are making it up, or that it is something you can just bounce back from. The video can be found here: http://youtu.be/qNLc5wyE4Fc
There is a lot of self-doubt. When you are told constantly that your illness is in your head by doctors (who have the test results in front of them proving that you have gastroparesis but they don't want to deal with you because your case is too complicated - that's happened to me, not all doctors mind you, just some), your family tells you it's in your head, your spouse or partner doesn't believe you - I mean, it all adds up. You feel like you're going crazy and you start to doubt yourself when you are told this all of the time. It really messes with your head and leads to anxiety, which makes gastroparesis attacks (or flares, whatever you want to call them) happen. It hurts and you feel betrayed by your body, family, friends, doctors, etc. It just makes you frustrated and upset. But, you have to let go of the self doubt because YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE! You are a lot stronger than you think you are.
ALSO, IT IS NOT IN YOUR HEAD!
I want to make sure that you know that. There are support groups that can help give advice. My group is, Stronger than Gastroparesis (GP Warriors): http://www.facebook.com/groups/strongerthanGP/ You are NOT alone. Feel free to join to the group to ask the members in there how they've dealt with explaining things to their family and how they have let go of self doubt. We also have sister groups that can help you in addition to our main group above.
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