Find us on Google+ Gastroparesis: May 2013

Wednesday, May 22, 2013

Regular GI Doctor Visit & Treatment Plan

The Follow Up Visit & Mayo Recommendations

Today, I found enough anger and determination to wage war in the doctor's office if he wouldn't listen to me or try to help me. I don't want to be written off by anymore doctors. So, I printed out the picture of before and after me, proving weight loss (picture below). I also brought the relaxation techniques that the Mayo psychologist gave me and explained what the Mayo doctor said about anxiety being the root of my problems.

I was able to show him all of my documents (I brought blog entries that he read too), including my weight loss:


The top picture is from 2011 and the bottom picture is from a week ago.

My GI doctor started laughing and told me that I had been on Celexa and Xanax for the past year and a half that he's been treating me along the way and he never witnessed me acting out of the ordinary, only being ill. He knows that I've been treated for and I've been managing my anxiety because he has the records, and like I said before, I've been under his care since he diagnosed me last year (March). Additionally, he read my blog entries that I brought and I told him that writing has always helped me overcome overwhelming things. I told him my blog had 19,000 views and he told me that was impressive. I explained that I document tests because there's not many resources online about them. He agreed with me and told me I was doing an excellent job.

After all of that, the GI told me that he doesn't think anxiety is the issue. He laughed at that diagnosis. Then, he stopped laughing and told me that doctor probably said that because he didn't know how to treat me and didn't want to deal with me anymore. Sadly, I think he's right. He apologized for sending me there. He said that he really thought I would receive treatment there since the Mayo Clinic has a reputation for having the best specialists for GI/GP issues.

He said to me that I will have to deal with this illness the rest of my life. I honestly was hoping to hear some good news about treatments. I know there's not a cure, but there has to be something they can do to decrease the nausea and vomiting so that I can get my life back.


I told my GI about my Mayo test THE pH PROBE. When I told him the results of that test, he was just floored. He was just sitting there in shock for a moment. Telling your GI that over a period of 24 hours that you had 56 recorded episodes, 44 of them vomit ... will bring strange looks to their faces. He gave me a look of pity and condolence all at the same time.


The Mayo doctor recommended a CHRONIC LIVER TEST as well as a PELVIC FLOOR TEST. The Mayo Doctors recommended exercise as well, cardio for 30 minutes. If I could exercise like I want to, I would be hiking. I told the doctor about my horse riding lesson planned for Thursday and he thought that was good enough exercise for now. I'm also doing yoga but it's hard to do when you're really nauseated all of the time. One of my fraternity brothers wants to take Yoga classes with me. I'm going to search around for beginning lessons somewhere so that we can go together. She'll be my motivation to kick my butt when I'm sickest to go. Yoga has always relaxed me. I used to take it at my previous college before because our student fees paid for it - so it was completely free to us. At my current college, you have to pay for it - but I'd rather pay to take it somewhere else. I told my GI doctor that I was worried about vomiting during a yoga session. This lead to the stomach surgery conversation.

My regular GI doctor asked about the status of the NISSEN FLUDOPLICATION. I told him that Mayo refused to do the surgery because I'm vomiting too frequently and too violently, that I would undo the surgery.

The Mayo doctor recommended for me to follow up with my regular GI doctor for extra tests. He wanted me to have a CHRONIC LIVER DISEASE and PELVIC FLOOR TESTING.




My Current Symptoms

I told him about my newest symptoms which include, but not limited to:

*Stumbling around while walking but no dizziness.

*Having blackouts of entire days that I don't remember. For example, I can remember Saturday but I have to look up what I did other days on Facebook.

*Dehydration.

*Cannot urinate unless I bear down really hard.

*Having issues sleeping because of frequent vomiting.

*Vitamin deficiencies in vitamin B-12, vitamin C, and vitamin D. All of the levels are extremely low.

NOTE: Vitamin B-12 injections are on back order.

*Seeing black spot.

*Becoming hypoglycemic because nothing stays down.

*In a LOT of pain - blood pressure is still high. The nurse said my heart was racing.

*Friday, my blood pressure was 184/93.

*I'm immune to acid reflux medications.





The Treatment Plan

My regular GI doctor didn't think the chronic liver test was an issue and refused to put me through it. He also gave me a B-12 injection in house, which helped my energy level a lot. He said that confusion, disorientation, memory loss, and all of those symptoms were from vitamin deficiencies and malnourishment.

Next, I talked to him about BOTOX THROUGH ENDOSCOPY. He agreed that was worth a try, and I'm scheduled for Botox on June 12th!

He is sending me to a pain management specialist to deal with my GP. He said there are pain patches and things they can give me since I have issues keeping food/liquids down.

He is also going to follow up on the Mayo doctor's recommendation of Pelvic Floor Testing.

Additionally, he is also going to schedule an appointment for me to get TRIGGER POINT INJECTIONS. I have had these done for my back my by my spinal cord stimulator. I didn't realize how tight the muscles were until they injected all of the trigger points. My muscles relaxed instantaneously. Every doctor makes up the trigger point cocktail differently, I learned through my stimulator doctor. Usually, it's lidocaine (numbing medicine), cortisone (steroid for inflammation), and some sort of muscle relaxer. It will definitely help some of the muscles I've hurt while vomiting in my abdomen.

The GI also said that if the symptoms I was having progress (seeing spots, etc), that I need to see a neurologist. I agree with that and will follow up after I give the B-12 a chance.














Tuesday, May 21, 2013

Relaxation Techniques from Mayo

I was told to learn Relaxation Techniques from Mayo, so I'm going to share them with you. If you cannot read the text that I've uploaded, I will be glad to type up everything for you tomorrow!


Let's start with Diaphragmatic Breathing (if you've done Yoga, you've used this method).































Introduction to Relaxation Skills























Sunday, May 19, 2013

Progressional Timeline of Gastroparesis/EDS/Dysautonomia Request for Research

Can you please send me a progression timeline of your Gastroparesis/EDS/Dysautonomia?


Please make a timeline and include years for - what happened right before you got sick, when you got sick, doctors visits and what they told you, any pain specialists, testings, test results, and your symptoms when you first got sick and symptoms before and now. Also, what do you think caused it? Include that in your timeline, too.

In addition to that, please write the dates for when you discovered other medical conditions before and after Gastroparesis. Please include whether you still have your gallbladder. If you no longer have your gallbladder, please put the date/year that you had it taken out. Were you diagnosed with Gastroparesis after your gallbladder was removed? When were you diagnosed with EDS or Dysautonomia or both? Do you have all three? Have you been diagnosed with more autoimmune illnesses once you were diagnosed with the first one? Do you have lupus or any other autoimmune illnesses? Please include those in your timeline, too.



I want to compare this to other people's progressive timelines. My goal is to find a common link between all of us and our GP.

Additionally, I can post results anonymously. If you wish to remain anonymous, just please let me know in the email that you send. I will ALWAYS respect your privacy.

PLEASE EMAIL YOUR TIMELINE TO EMILYSSTOMACH@GMAIL.COM AND INDICATE WHETHER YOU WANT TO BE ANONYMOUS OR NOT. ALSO, I NEED YOUR CONSENT STATED IN THE EMAIL THAT IT'S OK TO USE YOUR INFORMATION FOR RESEARCH AND PERMISSION TO HAND OVER ALL OF MY RESEARCH AFTER I WRITE MY PAPER TO A MEDICAL RESEARCHER WHO WOULD LIKE TO EXPAND ON MY RESEARCH. PLEASE INCLUDE YOUR CONTACT INFORMATION IF I NEED TO ASK YOU ADDITIONAL QUESTIONS.

Also, I wasn't trying to yell, but I wanted that to stand out since a medical researcher has gotten wind of the project. Keep in mind that when I hand over my research to her, names will be omitted but it could be a game changer for GP since this has never been done before.

I would like to receive a variety of samples - Idiopathic GPers, Diabetic GPers, Pediatric GPers, and Newly Diagnosed GPers. I want a variety of data to work with. So, if you think that you're not important because you're new to GP, you'd be wrong. I would also like to include the same with those with EDS and Dystonia.

Also, please include your AGE for data grouping. Please also include your name and contact information in case I need to follow up with you in depth with your timeline for any questions/concerns.

Also, if you can't remember dates, you can approximate or just write out your GP/DTP/Dysautonomia/EDS medical history. I can work with that, too. Excel might be the easiest way to put your information down.

Thanks again for participating in this research project.



Again, please email your GP Progression Timelines to emilysstomach@gmail.com.

If you can, please make your outline in an excel spreadsheet. It makes it easier for you to read and easier for me to sort. If you are a new GPer, just write about what happened before and after you were diagnosed. Include any complications.

Additionally, you can insert a chart in Microsoft Word or Open Office and add as many rows as you need. It helps to organize your information better if you want to go that route.

If you can't make it the way shown above, then you can do it straight down the Word document. You can write stories to go with each date and procedure you had done. The more information I have, the better our research will be.



This is an example of what mine would look like:

March 2012 - Diagnosed with GP

May 2012 - Went to Mayo Clinic.



I am compiling research so that it might inspire doctors to do a fully funded study to help us. The research could be a stepping stone for new ways of understanding GP to make new treatment and technologies! We can all be a part of something big - something life changing through research.

I have also asked Pediatric Gastroparesis to send us their children's GP Timelines. By having children thrown in the mix, maybe we could spot the common GP link between adults and children. They have graciously agreed to help me out with this project. Also, if you are an adult GP fighter with a child who is also a GP fighter, please send me both of your timelines. As always, I will be glad to keep in anonymous, just make sure you add that to the email. Please share this article around to others who have GP so that I can have a variety of samples, which will be really important.

I'm also curious as to what other medical conditions have resulted after you were diagnosed with Gastroparesis. I also want to know how many people have developed Gastroparesis after having their gallbladders out. So, please include that in your email: emilysstomach@gmail.com. If you think things are too trivial to put in your timeline, do it anyway. It might be really significant!

The ultimate goal I have is to put all of the common links and issues together and present my research (again, you can be anonymous) for doctors to pull medical records and expand on the research.

Basically, we are all being proactive because we want a cure! And, I don’t think this has ever been done before, so you could be a part of something truly amazing for GP history and its future!

Friday, May 17, 2013

Advice for Caregivers Who Witness Loved Ones Suffering from Gastroparesis

I have given this a lot of thought over the past week. I know that when I'm at my worst and cry, it's hard for my husband to hold me and just feel so helpless because it's not something he can help with. I feel bad because I'm not sure how to put him at ease. So, I decided to write an article on ways to help our loved ones who watch us suffer from the side lines. They shouldn't feel guilty or helpless because they actually help us more than they realize, mainly by just being there to listen to us vent, or to hold us when we cry. My husband also takes me to doctor's visits, which really helps me because it's hard to drive while vomiting. Family and friends can play a huge role in helping patients deal with a chronic illness, and in this case, Gastroparesis suffers.



There is a video that one of my friends with Gastroparesis made of her husband discussing his experience in dealing with my friend's illness. It's a touching video and probably will help others understand what it is like to be the loved one of a person suffering from Gastroparesis. The video can be found here: http://youtu.be/qNLc5wyE4Fc


There is a group that I created that will help answer questions and give advice. However, always check with your doctor and pharmacist. I am a licensed pharmacy tech, so I do have a medical background of sorts and I've been published in geological journals for research. Additionally, United Healthcare uses my blog as an electronic resource for new Gastroparesis patients. One of my friends forwarded an email to me that surprised me that she got from United Healthcare listing my blog. So, that's my background. Here is the link to my group, Stronger Than GP (Gastroparesis Warriors): http://www.facebook.com/groups/strongerthanGP/





How To Help A Friend/Loved One With Gastroparesis:

Be honest - say, "I wish I knew what to say, but I care and I'm here for you."

Be there for them in any way they need you.

Do go to support group meetings with your friend, we do have a sister group for family and friends who have loved ones with Gastroparesis. Family and friends are always welcome, and that's the best place for you to ask questions and learn about Gastroparesis. Loved Ones with a Gastroparesis Warrior: http://www.facebook.com/groups/support4lovedones/

We also have another group, GP Warrior Parents & Parents of GP Warriors: http://www.facebook.com/groups/GastroparesisParents/ This group is for parents who have Gastroparesis and also for parents who have Gastroparesis Warriors.

I also have a page that I update with motivational pictures, educational articles, make jokes, and post to help those with Gastroparesis. My page is: Emily's Stomach: http://www.facebook.com/emilysstomach/

Keeping it light and making jokes is okay. We're not as fragile as we sometimes seem. It's all about the timing and the presentation. If you know the person well, do what you know they will find funny. Laughter is healthy. You can also join the group, Laughing Through Gastroparesis: http://www.facebook.com/groups/laughingthrugp/ for comedy and stress relief.

Let them know that they can always talk to you - even if it's just a vent session.

Always listen when your friend is frustrated - Gastroparesis is very frustrating.

Be there if your friend needs help, but encourage them when they want to do it themselves.

Remind your friend that he or she is in a very hard position - but that he or she is coping well.

Treat your friend as though they are a whole person - despite any limitations. Your friend wants to feel in control and capable, not as if they are wearing a big old banner for sickness. Even with Gastroparesis, we want to feel as normal as possible.

Learn about his/her Gastroparesis. Ask your friend for more information about how GP affects them. Just because you read about Gastroparesis online doesn't mean you know how it affects your friend. We all cope differently.

Let your friend know you are thinking of him/her. Send a card, an email, a text, a phone call.

Offer specific forms of help - "I'm going to the grocery store, do you need anything?" or "Can I do some laundry for you?" Any number of household things, your friend might need help with. Offer to take care of it. On a bad tummy day, we barely have the energy to get out of bed, so this is SO helpful.

Offer to cook within your friend's GP dietary limitations: www.pinterest.com/chikensrule Or we also have another group, Friendly Recipes for GP Warriors: http://www.facebook.com/groups/gpfriendlyrecipes/



Offer to help research the Gastroparesis, if your friend wants help.

Volunteer to watch their children. Take the kids out for ice cream or to a movie to give your friend some peace.

Offer to watch his/her kids during doctor appointments. It's often hard to find so many babysitters, and taking kids to an important appointment isn't always an option. Especially with all of the procedures and testing we endure at doctor's visits.

Chauffeur your friend around to places they may need help getting to like the doctor's office, the grocery store, and other errands.

Ask the person's partner how to best help the family. If there are a number of things to be done, organize a number of friends to help complete these chores.

Offer to take your friend to the doctor and take notes for them.

Do be an advocate for your friend.

Do encourage your friend to continue trying new things. When treatments don't work, those with Gastroparesis get discouraged. When doctors give up on them, they get frustrated. When they get tossed around from one specialist to another, they get anxious. But stay by their side and tell them you'll be there when they are ready to try something new. That tells your friend that they have a reason to keep trying. That means more to them than you realize.





How NOT To Help A Friend/Loved One With Gastroparesis:

Don't tell your friend how they "should" feel. Unless you have their illness, you don't know.

Don't presume you know what's wrong with your friend or what they're going through.

Don't compare your (xyz) to their (abc). That's like comparing apples to elephants.

Don't discuss worst-case-scenarios unless your friend brings it up first. And if they do, listen supportively - this is the hardest conversation imaginable for your friend.

Don't suggest drugs or treatments someone you know takes. Your friend is going through a treatment plan with his or her doctor - let the doctor take care of the medical advice for GP.

Don't criticize them for whining on a rough day. Gastroparesis is rough and good days are few and far between.

Don't offer the latest medical advice you heard about on Dr. Oz. In fact, don't give them medical advice at ALL, unless your friend has asked for you to help research the illness.

Don't downplay or belittle their illness in anyway. Your friend is fighting a battle - don't lose sight of that.

Don't assume your friend copes the same ways that you do. Let him/her cope in his own way. Don't tell your friend that they are coping the wrong way.

Don't bring up each "treatment" you've heard about Gastroparesis. He or she is constantly being bombarded with "treatments" and needs a break.

Gastroparesis isn't just a matter of attitude. Don't say things like, "when are you going to get out of bed?" or "I heard stress causes this illness." It's unfair and not true.

Be sensitive to limitations. Don't say things like, "Let's get some fresh air and take a walk." Your friend knows their limitations, which may change from day to day. Things they could do yesterday may not be the same as what they can do today. Don't question that. Gastroparesis can cripple your friend to the point that they can't leave the restroom.

Never insinuate that your friend is "faking it." People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is "made-up" is a special breed of hurt.

Don't ever ask "How are you?" or "How are you feeling?" because the answer never changes and your friend doesn't want to talk about it. Instead ask, "How is your day going?" or "Is there anything you need help with today?"

Finally, if someone you love is suffering from a chronic illness, learn about the disease, help out with daily errands and chores, and give emotional support. Sometimes we all need a shoulder to cry on.


SOURCE HERE.




Toni Bernhard writes this in her article,

"Here are four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation. There are online organizations and associations devoted to every chronic illness or condition. Once you find them, you can forward links or print out pages for loved ones to read. If you have a book about your illness, photocopy the chapters that cover what you’d like your loved ones to know about your new life. (I did this for my close friends, attaching a short explanatory note to two chapters that I copied.)

Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them. Describe what your day is like now, and express how you feel about this unexpected change in your life. A friend of mine wrote a letter like this to her mother when, despite their many conversations about her illness, her mother persisted in saying things like, “If you’d just get up off the couch and go out and exercise, you’ll be fine.” The letter transformed their relationship. Now her mother is one of her main sources of support.

Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. After each doctor’s visit, I’d send them a long email describing the appointment in detail, medical jargon included. I’d get back a supportive sentence or two. It took several years for me to realize that my relationship with them would be more enjoyable and richer if I didn’t always talk about my illness. Now I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much needed respite from thinking about my illness all the time.

In the end, accept their limitations. Some family and close friends may never accept this change in your life. Try to recognize that this inability to accept you as you are now is about them, not you. Your medical condition may trigger their own fears about illness and mortality. You can’t always fix how others think of you or treat you, but you can protect yourself from allowing their lack of understanding to exacerbate your symptoms. The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are. The physical suffering that accompanies chronic illness is difficult enough without adding mental suffering to it.

Everyone (including yourself as a caregiver) needs time to let Gastroparesis, which is a life-changing circumstance sink in. Hopefully, these tips will make the road to acceptance less stressful."





SOURCE HERE.


Wednesday, May 15, 2013

A Suggestion for Constipation Issues Due to GP

This was suggested by an anonymous source on GASTROPARESIS and I thought it was intriguing enough to share. I would love for people to comment on this entry to let me know if it worked for them.

If you're like me, you can't really go to the bathroom because nothing really stays down. However, sometimes, food does empty and get through that leads to miserable pain because it doesn't move. Here is a tip to make your life easier.

NOTE: Be sure that if you do this, you stay close to a bathroom to avoid emergencies. Also, remember NO TWO GPers are a like, this may work for some while others may not be able to handle the acid from the lemon.


Anonymous writes,

"I wanted to write this privately because I don't want everyone else on my feed reading anything about my bathroom habits, but I just had to tell other GPers something that has made a huge huge HUGE difference for me.

I know not everyone with GP has this problem, but for those that can't go to the bathroom regularly (I can only go a couple times a week) and thus ends up with the extreme abdominal pain... they should try lemon water. Seriously. I have a well so I use tap water, but I just pour a mason jar full of water and squeeze in a whole lemon. Only a few sips in and you'll need to run to the bathroom, even after not having been able to go for days. I keep it with me all day, taking a few sips at a time. The pain... my god it was instantly alleviated. No laxatives, no medications, no anything that hurt my stomach more. Just water and lemon I would suggest using organic lemons because they contain more nutrients, but I'm sure it will work either way. I'm so incredibly happy, I might even go take the dog for a walk in the sun in a little bit.

Also, just wanted to mention that I've tried this a few times now and it's worked EVERY time. Such a huge relief. Although I will mention... do this only if you're going to be near a bathroom for a while!

Hope this helps someone like it has for me."


Please share your experiences if you try this. I'm curious to see if it helps!

Friday, May 10, 2013

pH Probe Test Results - Mayo Visit Day 2

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. =)

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!