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Thursday, April 25, 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.

Wednesday, April 17, 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.

Gastroparesis and Me + Mayo Clinic Updates

I logged into Facebook today and got a really nice surprise. Tanya, from GASTROPARESIS AND ME posted this,

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.

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.

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,

"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.

Wednesday, April 10, 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 on the GASTROPARESIS FACEBOOK PAGE. 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.


You can also read about LaShelle's journey and mine on our website www.gnewithgp.org. Our blogs are linked from there. I hope this helps! 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." There are resources on both of our blogs to help you through this rough patch of trying to explain things to your friends and family. LaShelle has really good articles that address the issue, too.


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.


Also, here is a video that Tanya recorded during her GP attack. If you have family or friends who think this is all in your head, show them THIS VIDEO.


LaShelle, creator of the Gastroparesis Facebook Page has written articles on how to talk to someone about a chronic illness. Here is a sample of her article, "One of the most effective ways to get through to someone is by trying your best to match their unkindness with gentle kindness. It can take a while for them to come around but when you begin leading by example, you teach them how to act and how to effectively treat you. In other words, when you hear them say awful things to you or about you, you can choose to be the bigger person by matching their resentment and anger with kindness and respect. This doesn’t mean that you are a door mat so when all else fails, you can chose to walk away." To read the rest of her article, please click HERE.


She also wrote an article about self-doubt. Let's face it, we've all been there at one point or another. If you feel like this then this is the article for you. Here's a quick blurb, "There comes a time during your journey with an invisible illness when you come face-to-face with self-doubt. Self-doubt can be one of the most painful and toxic experiences that you may ever have. When no one else will fight for your health, you absolutely must do it for yourself. So when self-doubt creeps in like the thief in the night, it robs you of the only leg you have left to stand on. In order for you to get the help you so desperately require, you end up having to fight your worst enemy… yourself." You can read the rest of the article by clicking HERE.




Insight into Diabetic Gastroparesis from an Idiopathic Perspective

I am not diabetic, although, I do become hypoglycemic occasionally. LaShelle who created the Gastroparesis Facebook page and owner of the GREEN'S NOT EASY BLOG and I were chatting last night about Diabetic GP. We came to the conclusion that we should shed light on their condition in addition to idiopathic GP. LaShelle inspired this article and I just wanted to thank her for bringing it to my attention. All of the links are in bold, capital letters. If you click on them, they take you to the site they are referencing.

I wanted to provide some insight into DIABETIC GASTROPARESIS for those of us who are idiopathic. I have asked the Diabetic GP warriors on the GASTROPARESIS FACEBOOK PAGE, the GASTROPARESIS AND DIABETES SUPPORT GROUP, and the DIGESTION DISORDERS FORUM on Facebook. I have cited people to the best of my ability without giving away personal information.

Let's start with what Diabetic Gastroparesis is. The AMERICAN DIABETES ASSOCIATION has written this on the subject,

"Gastroparesis is a type of neuropathy (nerve damage) in which food is delayed from leaving the stomach. This nerve damage can be caused by long periods of high blood sugar.Delayed digestion makes the management of diabetes more difficult. It can be treated with insulin management, drugs, diet, or in severe cases, a feeding tube.

Gastroparesis is a disorder affecting people with both type 1 and type 2 diabetes in which the stomach takes too long to empty its contents (delayed gastric emptying). The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.

Just as with other types of neuropathy, diabetes can damage the vagus nerve if blood glucose levels remain high over a long period of time. High blood glucose causes chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves.
What are the symptoms?


Signs and symptoms of gastroparesis include the following:

Heartburn
Nausea
Vomiting of undigested food
Early feeling of fullness when eating
Weight loss
Abdominal bloating
Erratic blood glucose (sugar) levels
Lack of appetite
Gastroesophageal reflux
Spasms of the stomach wall


These symptoms may be mild or severe, depending on the person.



What are the complications?

Gastroparesis can make diabetes worse by making it more difficult to manage blood glucose. When food that has been delayed in the stomach finally enters the small intestine and is absorbed, blood glucose levels rise.

If food stays too long in the stomach, it can cause problems like bacterial overgrowth because the food has fermented. Also, the food can harden into solid masses called bezoars that may cause nausea, vomiting, and obstruction in the stomach. Bezoars can be dangerous if they block the passage of food into the small intestine.
How is it diagnosed?



The diagnosis of gastroparesis is confirmed through one or more of the following tests:

Barium X-ray

After fasting for 12 hours, you will drink a thick liquid containing barium, which covers the inside of the stomach, making it show up on the X-ray. Normally, the stomach will be empty of all food after 12 hours of fasting. If the X-ray shows food in the stomach, gastroparesis is likely. If the X-ray shows an empty stomach, but the doctor still suspects that you have delayed emptying, you may need to repeat the test another day. On any one day, a person with gastroparesis may digest a meal normally, giving a falsely normal test result. If you have diabetes, your doctor may have special instructions about fasting.

Barium Beefsteak Meal

You will eat a meal that contains barium, which allows the doctor to watch your stomach as it digests the meal. The amount of time it takes for the barium meal to be digested and leave the stomach gives the doctor an idea of how well the stomach is working. This test can help find emptying problems that do not show up on the liquid barium X-ray. In fact, people who have diabetes-related gastroparesis often digest fluid normally, so the barium beefsteak meal can be more useful.

Radioisotope Gastric-Emptying Scan

You will eat food that contains a radioisotope, a slightly radioactive substance that will show up on the scan. The dose of radiation from the radioisotope is small and not dangerous. After eating, you will lie under a machine that detects the radioisotope and shows an image of the food in the stomach and how quickly it leaves the stomach. Gastroparesis is diagnosed if more than half of the food remains in the stomach after two hours.

Gastric Manometry

This test measures electrical and muscular activity in the stomach. The doctor passes a thin tube down the throat into the stomach. The tube contains a wire that takes measurements of the stomach's electrical and muscular activity as it digests liquids and solid food. The measurements show how the stomach is working and whether there is any delay in digestion.

Blood tests

The doctor may also order laboratory tests to check blood counts and to measure chemical and electrolyte levels.




To rule out causes of gastroparesis other than diabetes, the doctor may do an upper endoscopy or an ultrasound.

Upper Endoscopy

After giving you a sedative, the doctor passes a long, thin tube called an endoscope through the mouth and gently guides it down the esophagus into the stomach. Through the endoscope, the doctor can look at the lining of the stomach to check for any abnormalities.


Ultrasound

To rule out gallbladder disease or pancreatitis as a source of the problem, you may have an ultrasound test, which uses harmless sound waves to outline and define the shape of the gallbladder and pancreas.


How is it treated?

The most important treatment goal for diabetes-related gastroparesis is to manage your blood glucose levels as well as possible. Treatments include insulin, oral medications, changes in what and when you eat, and, in severe cases, feeding tubes and intravenous feeding.


Insulin for blood glucose control

If you have gastroparesis, your food is being absorbed more slowly and at unpredictable times. To better manage blood glucose, you may need to try the following:

*Take insulin more often
*Take your insulin after you eat instead of before
*Check your blood glucose levels frequently after you eat and administer insulin whenever necessary

Your doctor will give you specific instructions based on your particular needs.
Medication

Several drugs are used to treat gastroparesis. Your doctor may try different drugs or combinations of drugs to find the most effective treatment.


Meal and Food Changes

Changing your eating habits can help control gastroparesis. Your doctor or dietitian will give you specific instructions, but you may be asked to eat six small meals a day instead of three large ones. If less food enters the stomach each time you eat, it may not become overly full. Or the doctor or dietitian may suggest that you try several liquid meals a day until your blood glucose levels are stable and the gastroparesis has improved. Liquid meals provide all the nutrients found in solid foods, but can pass through the stomach more easily and quickly.

The doctor may also recommend that you avoid high-fat and high-fiber foods. Fat naturally slows digestion — something you don't need if you have gastroparesis — and fiber is difficult to digest. Some high-fiber foods like oranges and broccoli contain material that cannot be digested. Avoid these foods because the indigestible part will remain in the stomach too long and possibly form bezoars.


Feeding Tube

If other approaches do not work, you may need surgery to insert a feeding tube. The tube, called a jejunostomy tube, is inserted through the skin on your abdomen into the small intestine. The feeding tube allows you to put nutrients directly into the small intestine, bypassing the stomach altogether. You will receive special liquid food to use with the tube. A jejunostomy is particularly useful when gastroparesis prevents the nutrients and medication necessary to regulate blood glucose levels from reaching the bloodstream.

By avoiding the source of the problem (the stomach) and putting nutrients and medication directly into the small intestine, you ensure that these products are digested and delivered to your bloodstream quickly. A jejunostomy tube can be temporary and is used only if necessary when gastroparesis is severe.

It is important to note that in most cases treatment does not cure gastroparesis — it is usually a chronic condition. Treatment helps you manage gastroparesis, so that you can be as healthy and comfortable as possible."


I posed a series of questions to GP/DTP groups on Facebook and I received some amazing advice for those who are newly diagnosed with GP who may also have Diabetes. The questions I asked were:

Question 1: If you could give a tip to someone with diabetes who is newly diagnosed, what would it be?

Question 2: Please name one thing that you wish someone had told you about GP & Diabetes.

Question 3: Name things that help you cope through both conditions?

Question 4: What do you eat/do when you have low blood sugar with GP?

Question 5: What do you use as a source for Diabetic and GP safe recipes?

Question 6: Are you a Type 1 or a Type 2 Diabetic?


Here are the following answers that I have received. I hope they help those of you who have Diabetic Gastroparesis:


Kathleen writes,

"1. See endocrinologist asap after being diagnosed because you will most likely need to change how and when you dosage insulin to account for delay of food being digested.

2. Any diabetic can get GP. You can have a history of very well controlled diabetes, with A1C always under 7, as was the case with my daughter , and still get it. Her diagnosis was delayed because we were originally told that she couldn't possibly have GP because she hadn't had uncontrolled diabetes for a long time.

3. Humor and hope [check out the page I admin that has motivational pictures and humor. It's called LAUGHING THRU GP. *Emily*] You have to be able to laugh at some of the things we go through and always have hope that things will get better or that you can get through each obstacle that comes your way.

4. Apple juice works best for us. I am also a Type 1 Diabetic.”



Christine writes, “I walk every day.

2. Diet to combine the two.

3. Small and healthy meals combining 2 diseases and exercise.

4. Glucerna .

5. Difficult one but I use vegetables that I am allowed to enjoy along with chicken and fish.

6. I am also a type 2 diabetic.”



Diane writes,

“Question 1: If you could give a tip to someone with diabetes who is newly diagnosed, what would it be?
Read Labels. You would believe some of the stuff that has sugar in it.

Question 2: Please name one thing that you wish someone had told you about GP & Diabetes.
One thing is that you could get GP because of diabetes. Never heard of this kind of neuropathy until I got it.

Question 3: Name things that help you cope through both conditions?
Don't beat your self up for things you "used" could do.

Question 4: What do you eat/do when you have low blood sugar with GP?
Milk or Orange Juice [as a side note, OJ is very acidic and could lead to a GP attack - apple juice is safer *Emily*]

Question 5: What do you use as a source for Diabetic and GP safe recipes?
http://www.dlife.com.”


Claudia writes,

“#1 To believe in yourself, educate yourself, don't think the doctors are in control of your body, you are.

#2 I can't think of one thing for Type1, but I wish someone had explained to me that with GP it affects each person differently... same condition, different methods or treatments for each.

#3 Friends that are understanding and non-judging, hard to find, not many out there, but hold onto the TRUE ones.

#4 100% Juice saves me from lows when I am fighting with GP.

#5 I do not cook, I just steer clear of a lot of fiber and solid food... seems safer to me than to battle the moments afterwards."


Jason writes, “I do not have either diabetes nor GP but my father does and we have been through hell and back trying to get it under control. Through my experience I can recommend to people experiencing these ailments is to be proactive. I watch the doctors sit on there hands while my dad lost 50 lbs in 3 months on top of numerous sugar crashes and vomiting spells. Going to the er at least once a week with them just sending him home after his sugar leveled or he stopped the vomit/diarrhea spell. The doctors wrote my dad off basically and if it wasn't for us looking up stuff on our own and trying to convince the doctors to try things that they didn't think of, and believe me this is no small tasks when you have doctors that know everything, they told us "he's a very sick man" something we already knew and wanted to try and fix this to the best we could. Finally the doctor listened and they put him on tpn to help him get some weight back and also an anti depressant ( I can't remember the name) but its been known to help people with gp because it acts on the same neuroreceptors that anti nausea medicine does and also stimulates appetite. He then since has gotten a stimulator put in that is connected to his stomach and it seems to be helpful. I'm still learning myself on diabetics and gp. All I can recommend is to be proactive. Don't wait until it gets so bad like it did with my father. If you're not getting anywhere with your doctor find a new one. There is a lot of information online that we found helpful also.”


Janet writes, “Before I had my pancreas transplant, I had GP for about the last 5 years of my 26 year type 1 diabetes run. Type 1 diabetes and GP together is a bitch (excuse the language but it the mildest I can use to describe it). It is patly what put me in kidney failure. It makes it unbelievably hard to control your blood sugar, which of course causes further GP damage as well as damage to every other system in your body (nerves, blood vessels, eyes, heart, and on and on). As far as your questions:

1) Keep the best control of your blood sugars you can for exactly the reasons I stated above! I ended up in end stage kidney failure, on dialysis and getting a kidney and pancreas transplant by the time I was 33! The worse the GP gets, the harder the blood sugars get to control, even on an insulin pump. I could ho from 500s to 40s in less than half an hour.

2) When I was first diagnosed, I wish they had told me GP existed. Although at age 6, I'm sure they told my parents, bit not me as I would never comprehend it. Nor do I know if they were even aware of GP in the early 1980s.

3) To cope, I involved myself in the things I enjoy doing - spending time with my husband, playing with my dogs, sewing, crafting, gardening, etc. Of course, I was still working at the time (although that stopped when I went into kidney failure). I also saw (still do) a clinical psychologist (deals specifically with patients with chronic medical issues) and a psychiatrist, which helps tremendously.

4) When I had low blood sugar, I would treat with either juice (no oj though) or let chocolate melt in my mouth.

5) As gar as diet, no one ever suggested a special diet to me, so I no suggestions. All they ever did was try to treat me with meds.

Feel free to ask me more if you like. And I don't mind if you use my name. I am all about spreading awareness of diabetes, GP, kidney disease and organ donation. If my responses seem a little disconnected, please excuse me. I've been in the hospital almost nonstop since last Monday due to GP and the flu! And I'm still here!”


Arizona writes, " I use glucose tabs to bring my sugar up and if its really low I take a glucagon shot. I usually run super high during my period when my stomach freezes completely. Check your sugar as often as possible and take insulin more often. And after meals instead of before. Diabetes and GP can give you a run for your money. I wish my dx doctor would have told me to make a lifestyle change. He told me I could eat a cake for breakfast as long as I took insulin. What kind of doctor does that?"


Tina writes,

"#1-That gp & diabetes do exist. Start a diabetic diet. Learn to read labels & try to get as close to zero down the line in the fat, sugar, carbohydrates, & sodium categories. Cut out all fat, sugar, sodium, carbohydrates, gluten, etc. If one cooking oil says 50% fat & the other says 25% then purchase the 25% cooking oil. Cook w/cooking spray. Use spray butter. Although more expensive your systems will thank you later.

#2-It's okay to eat light soups, shakes, smoothies, or blender meals as your meal for management of diabetes & gastroparesis.

#3-Being able to say NO when others think you should be eating @ the all you can eat buffet! A good blender is probably the #1 thing needed for management of gastroparesis. A good heating pad, bed, pillows, loose fitting clothes, etc. Having understanding people in my life has been a really big help.

#4-I eat a yogurt smoothie, raisins, squash smoothie soup, broccoli smoothie soup, a half an apple w/a tablespoon of peanut butter & a tablespoon of marshmallow crème mixed together for a light dip, a cup of cantaloupe & strawberries blended into a smoothie, a few chips w/ranch yogurt dip, a watermelon smoothie, some raw fresh fruits & vegetables, guacamole & a few chips, beans (1/2 cup) & a few chips, a rice crispie treat, etc. I guess you really have to eat the minimum but several (6) times or more per day, not all @ once.

#5-Less is more. Replace all ingredients high in fat & sugar in recipes w/fat free & sugar free items. It’s more expensive but will be better on your systems in the long run. Eat foods easily digested & more fresh fruits & vegetables. Eat less or no meat because it's hard to digest. Don't eat anything white because it is high in sugar, bread, potatoes, rice, pasta, etc. Eat a small meal, wait 30 minutes, & you will feel full as your blood sugar rises. When you get hungry that is when your blood sugar has dropped. It's important to eat alittle something during this time as opposed to waiting 8 hours before eating. Dangerous! Another reason to always carry hard candy in your pockets. Anyway, I could probably write a book on these subjects, lol. Sorry for the brief synopsis. Hope it helps someone out there!"


Pauline writes, "I'm not a diabetic but would like to add something. I use ginger to treat my gastroparesis as it stimulates gastric motility. Ginger wouldn't be advised in the majority of diabetics since it speeds a meal hitting the bloodstream. When gastroparesis is a factor as well though, ginger can be of use to them. Crystalised ginger is a good thing to keep on hand for episodes of low blood sugar."


Audra writes,

"#1. Listen to your body. Learn how you feel during highs and lows. Your meter is your best friend in the beginning since you won't know what your new "normal" feels like.

#2. That GP IS a diabetic complication that must be managed, not ignored. Part of the management is working with a dietician to learn what foods you can tolerate that help keep your blood glucose in check. Also, that many oral medications that may be helpful for others don't work for GP because of the gastric emptying differences.

#3. It's not about coping, it's about managing. It takes time to grieve, just like when you are diagnosed with any major illness. Then you pick yourself up, make a plan and forge onwards. Learn your options, work with your providers and never stop educating yourself.

#4. I carry glucose liquid purchased at Walmart, a high protein snack bar that can withstand being "beaten up" in my bag, glucose gel tube and keep a Glucagon injection at home (since that's the most likely place I'll need it). I never know which form I'll tolerate best at any given time. If you use the injection, you will have to eat protein very shortly thereafter as it will completely destabilize your body.

#5. www.myrecipes.com to get ideas for food prep that I can tolerate. I eat primarily chicken and am always looking for ways to cook it differently. Since I have so many food allergies, I just adapt recipes to what I can tolerate at the time. Every GPer is different and even the individual's tolerance change. I feel it's best to go with what you can eat than to force yourself into eating things that make you feel worse.

The recipes I recommend are HERE."


Heather writes, "I have gp and hypoglycemia and for the first time since I was diagnosed, I had a drop for me. I'm not very low but low enough for me to notice symptoms. I just eat done crackers and it fixed."

Tuesday, April 9, 2013

For the First Time, Researchers Isolate Adult Stem Cells from Intestinal Tissue

For the first time, researchers isolate adult stem cells from human intestinal tissue

Filed under: CTSA, Research, Medicine, Cell Biology and Physiology, Biomedical Engineering
The accomplishment provides a much-needed resource for scientists eager to uncover the true mechanisms of human stem cell biology. It also enables them to explore new tactics to treat inflammatory bowel disease or to ameliorate the side effects of chemotherapy and radiation, which often damage the gut.
For the first time, researchers isolate adult stem cells from human intestinal tissue
click to enlarge.

The UNC study was published online in the journal Stem Cells.

Media contacts: Michelle Maclay, 919-843-5365; Les Lang, (919) 966-9366, llang@med.unc.edu

Thursday, April 4, 2013



CHAPEL HILL, N.C. – For the first time, researchers at the University of North Carolina at Chapel Hill have isolated adult stem cells from human intestinal tissue.

The accomplishment provides a much-needed resource for scientists eager to uncover the true mechanisms of human stem cell biology. It also enables them to explore new tactics to treat inflammatory bowel disease or to ameliorate the side effects of chemotherapy and radiation, which often damage the gut.

“Not having these cells to study has been a significant roadblock to research,” said senior study author Scott T. Magness, PhD, assistant professor in the departments of medicine, biomedical engineering, and cell biology and physiology at UNC. “Until now, we have not had the technology to isolate and study these stem cells – now we have to tools to start solving many of these problems”

The UNC study, published online April 4, 2013, in the journal Stem Cells, represents a leap forward for a field that for many years has had to resort to conducting experiments in cells from mice. While significant progress has been made using mouse models, differences in stem cell biology between mice and humans have kept researchers from investigating new therapeutics for human afflictions.

“While the information we get from mice is good foundational mechanistic data to explain how this tissue works, there are some opportunities that we might not be able to pursue until we do similar experiments with human tissue,” lead study co-author Adam D. Gracz, a graduate student in Magness’ lab. Megan K. Fuller, MD, was also co-lead author of the study.

The Magness lab was the first in the United States to isolate and grow single intestinal stem cells from mice, so they had a leg up when it came to pursuing similar techniques in human tissue. Plus the researchers were able to get sections of human small intestine for their experiments that otherwise would have been discarded after gastric bypass surgery at UNC.

To develop their technique, the researchers investigated whether the approach they had taken in mice would work in human tissue. They first looked to see if the same molecules they had found stuck on the surface of mouse stem cells were also present on human stem cells. The researchers established that these specific molecules – called CD24 and CD44 -- were indeed the same between the two species. They then attached fluorescent tags to these molecules and used a special machine called a fluorescence activated cell sorter to identify and isolate the stem cells from the small intestine samples.

They found that not only could they isolate the human stem cells from human intestinal tissue, but that they also could separate different types of intestinal stem cells from each other. These two types of stem cells – active and reserve – are a hot topic for stem cell researchers who are still trying to figure out how reserve stem cells cycle in to replenish active stem cells damaged by injury, chemotherapy or radiation.

“Now that we have been able to do this, the next step is to carefully characterize these populations to assess their potential,” said Magness. “Can we expand these cells outside of the body to potentially provide a cell source for therapy? Can we use these for tissue engineering? Or to take it to the extreme, can we genetically modify these cells to cure inborn genetic disorders or inflammatory bowel disease? Those are some questions that we are going to explore in the future.”

The research was funded by the North Carolina Translational and Clinical Sciences Institute (NC TraCS), home of the Clinical and Translational Science Awards (CTSA) at UNC.

Link to the Article is HERE.