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Showing posts with label mental illness. Show all posts
Showing posts with label mental illness. Show all posts

Tuesday, January 8, 2019

Mental Health and Gastroparesis: Depression & Anxiety (Part 2)

I want the words, "mental illness" to not hold a stigma, but they do. We have been taught to stay away from these words lest they conjure up a padded room, where we are fed bowls of oatmeal, under a locked door, in a straight jacket. However, there are "mental illnesses" out there that can be treated so that we do not have to go to some place like that. While the mental healthcare in our country isn't the best, it's come a long way. I suffer from anxiety and depression but I go to a psychiatrist in order to treat it. I have to take care of my mind just like I try and take care of my body, even though Gastroparesis makes it harder, like any chronic illness would.

NOTE: THIS BLOG DOES NOT SUBSTITUTE FOR A DOCTOR. PLEASE, IF YOU ARE HAVING ANY DEPRESSION, ANXIETY, AND OTHER MENTAL HEALTH CONCERNS, PLEASE SEE YOUR DOCTOR ASAP! THIS IS SERIOUS AND IT'S GOOD TO HAVE AN OUTSIDE OF THE FAMILY, WHOM IS UNBIASED, AND WILL HELP YOU. AGAIN, WE ARE NOT DOCTORS SO PLEASE CHECK WITH THEM FOR ANY MEDICAL QUESTIONS YOU MAY HAVE OR IDEAS YOU MAY HAVE FROM THIS BLOG.

When you have a chronic illness, it can be isolating, depressing, and cause anxiety. I wrote about this in January 2017, and here is Part One of this article if you would like to read it before you delve into this one:

http://www.emilysstomach.com/2017/01/mental-health-and-gastroparesis-part-1.html







Image Source: HERE






Anxiety and/or Depression with A Chronic Illness

I apologize for taking an entire year to write a part two to this article. I, myself, have had a rough year like everyone else seemed to in the GP Community. I lost A LOT of friends last year in my support groups, people I started support groups with, and people I talked to regularly. I logged into Facebook this morning to check on my groups, as I've been sick with pneumonia on top of Gastroparesis for the past week and a half (before that, my husband and I were passing a respiratory virus back and forth) and found another one of my friends had died. She was someone I've known since I first started advocating for Gastroparesis. She was apart of the handful of women who helped start Gastroparesis support groups and build up the Gastroparesis Community. I wanted to dedicated this article to her, and the other friends I've lost. Last year, we lost 48 people.





Image Source: HERE






This year, so far, I think the total is eight people. It's heartbreaking. We need better treatments. Having invasive "treatments" like feeding tubes, which can cause infections and worse, and then on the other end of the spectrum, medicine like Reglan, which can lead to irreversible, neurological disorders. We need medication to help our stomachs, to keep them from cramping so badly, to help them contract. Most of all, we need doctors to not only acknowledge our pain, but the depression and anxiety that comes with having a chronic illness. So, I am going to focus on mental health and how to get help






Image Source:CDC







I have noticed, and it seems like more and more lately, that people are comparing chronic illness to other chronic illnesses. This is something that I never really understood. I mean, if you have a chronic illness and I have a chronic illness, why compare them? Don't we both have chronic illnesses? Why does one have to be worse than the other one when they are both miserable in similar ways? No, they may not be the exact same illnesses, but we have a lot in common. We should lift each other up and support one another, not diminish each other's plights. Plus, the stress of having people tell you that your illness is not as bad as other illnesses, which seems worse to me if you are told that by a family member and/or support groups, and that hurts.

For example, a friend of someone in my family wrote on my Facebook post (I was upset because I had been throwing up all day), "At least you don't have cancer." No, I do not have cancer but I have watched my family members and good friends die from cancer. That was a horrible thing to say! Gastroparesis may not be cancer, but complications of it have killed my friends. It just makes people, like us, feel worse and that can set off flares of our Gastroparesis, but I call them, "Attacks," because it feels like my body is waging war on itself.






Image Source: On the Image




That made me feel so much worse, physically, but definitely worse mentally. I see a psychiatrist, and I've been seeing him since 2004. I do this because mental health is important too, not just physical health. I want to make sure I can talk to someone and to get the help I need. I have severe anxiety and really bad social anxiety. That stems from my Gastroparesis. Most of my friends are sympathetic vomiters, and I vomit A LOT, so I'm scared to go to social functions, and scared I might cause a vomiting conga line.







The Brain in Your Gut (90% of serotonin in made here): http://www.emilysstomach.com/2017/09/the-brain-in-your-gut.html

Suicide and Chronic Illness: http://www.emilysstomach.com/2014/10/sucide-and-chronic-illness.html

When Telling Someone They Look Great Becomes an Insult: http://www.emilysstomach.com/2013/01/when-telling-someone-they-look-great.html






Image Source: HERE








Staying Positive When You are Stressed and/Depressed

**NOTE I am not a doctor. If you are depressed and/or suffer from anxiety, please talk to your doctor. They can help you further. This article is just suggestions and advice if you are going through a difficult situation, it does not get rid of or substitute for a doctor's care and advice**

I have written on this subject in different ways. Here are articles I have written in the past that I wanted to share before I start this article:

SUICIDE AND CHRONIC ILLNESS.

THE GRIEVING PROCESS FOR A CHRONIC ILLNESS AND HOW TO OVERCOME IT.

HOW TO STAY POSITIVE, ESPECIALLY IN DIFFICULT SITUATIONS.

LOSING A LOVED ONE TO CHRONIC ILLNESS AND HANDLING GRIEF.

SLEEP DEPRIVATION'S EFFECTS ON THE BRAIN.

FEELING GOOD EVEN WHEN YOU'RE FEELING DOWN.

SEVERE EMOTIONAL AND PHYSICAL PAIN.

ISOLATION AND SADNESS.






Source Image: HERE






Chronic Illness and Depression

**AUTHOR'S NOTE:** First and Foremost, depression isn't as simple as just be happy. It runs deep and it's hard to stay positive or enjoy the things you love. I've been struggling with depression for the past year. I find that I'm having more and more trouble sleeping at night, so not only am I depressed, but sleep deprived and exhausted. That will definitely NOT help a mental state in any way. As a matter of fact, it makes depression worse.


I have said things to friends on Facebook that might have been misconstrued because it's hard to convey tone over the Internet and also, because I may have worded it wrong (again, not trying to make excuses, I own up to when I make a mistake) because vomiting for the past forty-eight hours with no sleep, tends to effect the way you word things. Additionally, being chronically ill on top of that, plus a death in the family, not to mention another death five months ago, plus cyber bullies, mean comments on posts, and me being scared to log into Facebook because I don't know what the next horrible thing is going to be. This has really taken it's toll on me.


I know that I need to call my doctor tomorrow, and I will, but until then, I wanted to take all of this negativity and use it to create something positive. I'm human, and I make mistakes (probably more so lately because everything just happened at once, and it's A LOT to handle) and I am not perfect. I ask that you be patient with me, as I am trying to do my best.


I am so sorry to those of you I may have offended, and I hope in your heart, you can forgive me. I did not mean to come across as mean, as uncaring, and that I care about group numbers, page likes, or blog views than the GPers themselves; That is NOT true at all! Far from it! All I have ever wanted to do was spread awareness and help people. If I could just help one person, then all of this was worth it. I don't want people to think I value numbers over their well being.


I've never been that type of person and I don't want to come across that way. I deeply care about the GP Community and do my best to contribute with positive, educational, and articles, to try and contribute a little bit to the community to let people know they're not alone. The strongest words I can offer are "I believe you." If I can touch one person to help them or make them laugh, make them forget about the awfulness for a moment, then I feel like I have helped some. I'm just really depressed and down lately because I feel like the GP Community does not want me involved with them. Furthermore, I have panic attacks when I go to log in now, because like I said previously, I don't know what awful thing I'll have to face when I do log in. I'm exhausted, stressed, and have cried more in the past few months than I have in the past two years. I just feel lost and alone. The isolation is also not good for me but I don't feel well enough to do anything since I'm recovering from the worst flare I've had since 2012 (not saying I've never dealt with bad flares before but this one has been worse than most). The last time I was this sick, I was hospitalized for eight days and diagnosed with Gastroparesis. I just feel helpless and hopeless. I feel like all of my positivity went out of the window in the past few months. Not only do I have to deal with bad things in my personal life, but on Facebook now as well. I'm just not sure what to do anymore. The drama that's on Facebook has constantly been linked to me. I've been the subject of it but I've never started drama for the sake of starting drama (why would I want to tear down a community I helped to build). Since I am the subject of drama from different groups and different people, and the fact it keeps happening, makes people and organizations to take a step back and they tell me that I can't write for them anymore or do certain things because of all of the drama. That hurts more than anything. I can take attacks on me but they've started to effect the things I loved to do...and I'm not sure I can ever fix it. I will be honest, since it keeps happening, and I am the common denominator in all of it (you can check, I've never said a bad word publicly about anyone who has attacked me or the organizations who do not want any part of this mess. I can't blame them, really. Their organization comes first. But it's turned into a pattern now, so maybe it is me. I guess they want me off of Facebook. I just don't know how I can make this right. Maybe I can never make this right. What's done is done, and I feel like because of that, my happiness is in ashes and it feels like my soul has been crushed. I'm not over exaggerating, this is how I really feel. There has to be something wrong with me, because even though they're victim blaming, it's happening over and over again.











According to the World Journal of Gastroenterology,





Image Source: At Top







According to U.S. Pharmacist,

"A New Approach to Managing Gastroparesis

Manouchehr Saljoughian, PharmD, PhD
Department of Pharmacy
Alta Bates Summit Medical Center
Berkeley, California



US Pharm. 2019;44(2):32-34.




Gastroparesis is a chronic disorder that affects a significant subset of the population. Ordinarily, strong muscular contractions move food through the digestive tract. In gastroparesis, this mechanism is disrupted, and undigested food stays in the abdomen for a long time and makes a person feel nauseous with the urge to vomit. Gastroparesis can also cause a lack of appetite, which may lead to malnutrition, and patients who are not eating can expect discomfort, bloating, and heartburn.1

The pathophysiology behind gastroparesis is varied and depends on disease etiology. Vagal and/or autonomic neuropathy play an important role in the development of diabetic gastroparesis, and it is estimated to occur in up to 20% to 40% of patients with diabetes. Gastroparesis can cause problems with blood sugar levels and nutrition. Sometimes, it is a complication of diabetes, and some people may develop gastroparesis after surgery. Although there is no cure for gastroparesis, changes to the diet, along with medication, can offer some relief.1,2

Certain medications, such as some antidepressants, opioid pain relievers, and high blood pressure and allergy medications, can lead to slow gastric emptying and cause similar symptoms. For people who already have gastroparesis, these medications may make their condition worse. Women are more likely to develop gastroparesis than men, and it is reported that many people with gastroparesis do not have any noticeable signs or symptoms.1 In this article, we briefly review the symptoms, causes, complications, and management of gastroparesis.




Symptoms

Signs and symptoms of gastroparesis include a feeling of fullness after eating just a few bites, vomiting undigested food eaten a few hours earlier, acid reflux, abdominal bloating, abdominal pain, changes in blood sugar levels, lack of appetite, and weight loss.3
Causes and Risk Factors

There are several risk factors that are considered to play a role in the condition’s cause, such as vagus-nerve damage. The vagus nerve is the longest cranial nerve in the body and is responsible for many functions. It is especially essential for proper operation of the digestive tract. If the vagus nerve is damaged, transfer of food from the abdomen to the small intestine is reduced because the muscles will not operate properly.4

Type 1 and type 2 diabetes are known to damage the vagus nerve. Some autoimmune diseases and virus infections (e.g., HIV) are also believed to have a negative impact on the vagus nerve. In certain cases, the vagus nerve stops working properly due to drinking excessive alcohol. Surgical complications could also affect the vagus nerve.4

Other factors that can increase the risk of gastroparesis include abdominal or esophageal surgery, infection (usually a virus), certain medications that slow the rate of stomach emptying (such as narcotic pain medications), nervous system diseases (such as Parkinson’s disease or multiple sclerosis) and hypothyroidism.4 Complications resulting from gastroparesis are shown in TABLE 1.

Treatment of gastroparesis depends on the cause, the severity of symptoms and complications, and how well patients respond to different treatments. As a result, the main goals of treatment for gastroparesis are alleviation of symptoms, correction of malnutrition, and resumption of adequate oral intake of liquids and solids. Patients with severe nausea and vomiting might require hospitalization for IV fluid and electrolyte replacement, and IV-administered prokinetic and/or antiemetic drugs might be needed initially.5

Sometimes, treating the cause may stop the problem. If diabetes is causing gastroparesis, patients must control their blood glucose levels. Acute hyperglycemia may impair gastric motor function as well as inhibit the action of prokinetic drugs, such as erythromycin. In patients with type 1 diabetes, gastroparesis can be an indication for insulin-pump therapy.5

Most physicians recommend that patients have a low-fat and low-fiber diet, eat smaller portions frequently during the day, chew food properly, eat well-cooked food, avoid alcohol and carbonated water, and drink plenty of water.











Medication Therapy

Initial management of gastroparesis consists of dietary modification, optimization of glycemic control and hydration, and in patients with continued symptoms, pharmacologic therapy with prokinetics and antiemetics.

Metoclopramide: This first-line therapy for gastroparesis is a dopamine 2 receptor antagonist, a 5-HT4 agonist, and a weak 5-HT3 receptor antagonist. It improves gastric emptying by enhancing gastric antral contractions and decreasing postprandial fundus relaxation.6

Metoclopramide is also used short-term to treat heartburn caused by gastroesophageal reflux in people who have used other medications without symptom relief. Dosage is 10 mg to 15 mg orally up to four times a day, 30 minutes before each meal and at bedtime. Depending upon symptoms being treated and clinical response, dosage will be different. It is commonly used to treat and prevent nausea and vomiting.6

Erythromycin: This macrolide antibiotic has been available since the 1950s. It is rarely used as an antibiotic today and is primarily prescribed for its “prokinetic” effect on the gastrointestinal (GI) tract. It has been used successfully off-label for the treatment of gastroparesis and other GI hypomotility disorders. When erythromycin was used as an antibiotic, patients often complained that it caused abdominal pain. Researchers eventually determined that erythromycin stimulates motilin receptors in the GI tract. Motilin receptors stimulate GI contractions and result in increased GI motility. This medicine also increases stomach-muscle contraction and may improve gastric emptying.7

Both oral and IV erythromycin have been used for its prokinetic effect. The IV form is generally reserved for acute conditions. The oral form is usually given in lower dosages than required for antibiotic effects (i.e., 150 mg-250 mg orally 3 to 4 times a day given 30 minutes before a meal). The oral form has been shown to work rapidly and can be substituted when the IV form is unavailable.7

Domperidone: This medication is used to treat nausea and vomiting as well as complaints of the stomach that occur with delayed emptying. It is used in patients whose symptoms fail to respond to metoclopramide or with side effects to metoclopramide. Domperidone is a dopamine 2 antagonist and is available for use only under a special program administered by the FDA. Each film-coated tablet contains 10-mg domperidone base. It should be taken 15 to 30 minutes before meals and, if necessary, before sleep. If taken after meals, absorption is somewhat delayed. Domperidone is taken by adults and adolescents aged 12 years or older.8

Cisapride: This 5-HT4 agonist stimulates antral and duodenal motility and accelerates gastric emptying of solids and liquids, which, in open-label trials, has been maintained for up to 1 year. Although cisapride is better tolerated than metoclopramide, its use has been associated with important drug interactions with medications metabolized by the cytochrome P450-3A4 isoenzyme (e.g., macrolide antibiotics, antifungals, and phenothiazines), resulting in cardiac arrhythmias. In the United States, prescriptions for cisapride can only be filled through an investigational limited-access program from the manufacturer after providing documentation as to the patient’s need for cisapride and assessment of risk factors for cardiac arrhythmias (e.g., a QTc >450 ms).9

Antiemetics: Antiemetics are medicines that help relieve nausea and vomiting. Prescription antiemetics include ondansetron, prochlorperazine, and promethazine. Over-the-counter antiemetic medications include bismuth subsaliclate and diphenhydramine. Antiemetics do not improve gastric emptying. In addition, they have not been studied in the management of patients with gastroparesis, and their use in gastroparesis is based on their efficacy in controlling nonspecific nausea and vomiting and in chemotherapy-induced emesis. Diphenhydramine 12.5 mg to 25 mg is given orally or IV every 6 to 8 hours as needed and in patients with persistent symptoms. Ondansetron, a 5-HT3 antagonist, is given 4 mg to 8 mg orally three times daily. Prolongation of the QT interval and central side effects have limited the use of phenothiazines, such as prochlorperazine, to patients who remain symptomatic despite antihistamines and 5-HT3 antagonists.1,4,10

Tricyclic Antidepressants: Low-dose nortriptyline, a tricyclic antidepressant with low anticholinergic effects, has been demonstrated to decrease symptoms of nausea, vomiting, and abdominal pain in patients with diabetic and idiopathic gastroparesis. Certain antidepressants, such as mirtazapine, may help relieve nausea and vomiting. These medicines may not improve gastric emptying.11

Pain Medicines: Pain medicines that are not narcotic may reduce pain in the abdomen due to gastroparesis.

Gastric Electrical Stimulation: This procedure may be considered for compassionate treatment in patients with refractory symptoms, particularly nausea and vomiting with persisting symptoms despite antiemetic and prokinetic drug therapy for at least 1 year. Gastric electrical stimulation has been demonstrated to improve symptom severity and gastric emptying in patients with diabetes but not idiopathic or postsurgical gastroparesis. In the U.S., the gastric electrical neurostimulator has been approved as a humanitarian exemption device for diabetic and idiopathic gastroparesis.12





REFERENCES

1. Camilleri M, Parkman HP, Shafi MA, et al. Clinical guideline: management of gastroparesis. Am J Gastroenterol. 2013;108:18-37.
2. Wytiaz V, Homko C, Duffy F, et al. Foods provoking and alleviating symptoms in gastroparesis: patient experiences. Dig Dis Sci. 2015;60:1052-1058.
3. Homko CJ, Duffy F, Friedenberg FK, et al. Effect of dietary fat and food consistency on gastroparesis symptoms in patients with gastroparesis. Neurogastroenterol Motil. 2015;27:501-508.
4. Type 2 diabetes and gastroparesis. www.healthline.com/health/type-2-diabetes/gastroparesis. Accessed August 2018.
5. Parkman HP, Yates KP, Hasler WL, et al. Dietary intake and nutritional deficiencies in patients with diabetic or idiopathic gastroparesis. Gastroenterology. 2011;141:486-498.
6. Rao AS, Camilleri M. Review article: metoclopramide and tardive dyskinesia. Aliment Pharmacol Ther. 2010;31:11-19.
7. Maganti K, Onyemere K, Jones MP. Oral erythromycin and symptomatic relief of gastroparesis: a systematic review. Am J Gastroenterol. 2003;98:259-263.
8. Sugumar A, Singh A, Pasricha PJ. A systematic review of the efficacy of domperidone for the treatment of diabetic gastroparesis. Clin Gastroenterol Hepatol. 2008;6:726-733.
9. Abell TL, Camilleri M, DiMagno EP, et al. Long-term efficacy of oral cisapride in symptomatic upper gut dysmotility. Dig Dis Sci. 1991;36:616-620.
10. Youssef AS, Parkman HP, Nagar S. Drug-drug interactions in pharmacologic management of gastroparesis. Neurogastroenterol Motil. 2015;27:1528-1541.
11. Prakash C, Lustman PJ, Freedland KE, Clouse RE. Tricyclic antidepressants for functional nausea and vomiting: clinical outcome in 37 patients. Dig Dis Sci. 1998;43:1951-1956.
12. Heckert J, Sankineni A, Hughes WB, et al. Gastric electric stimulation for refractory gastroparesis: a prospective analysis of 151 patients at a single center. Dig Dis Sci. 2016;61:168-175.
To comment on this article, contact rdavidson@uspharmcist.co
Read More On: GASTROENTEROLOGY"

Wednesday, January 18, 2017

Mental Health and Gastroparesis: Weight Gain & Anxiety

Chronic illness can be hard on anyone, especially when it's invisible. And, it's not just chronic illness or invisible illness, it's mental illness as well. It's hard to convince people that you're sick when you look fine on the outside but inside is a different story. When people doubt you or tell you that your illness is all in your head, you start doubting yourself. You get depressed and anxious because you are scared to tell anyone about what is really going on with you. You start cutting yourself off from your friends, your family. You isolate yourself because you'd rather be alone than deal with the fallout of someone not believing you or your illness. People don't understand what they can't see. A family member, whom I'm close to, just recently told me I have a mental illness, my gastroparesis was in my head, and that I was a drug addict for taking medication prescribed to me by my physician. When people say hurtful things like that to you, it takes its toll on your psyche. You get depressed and you feel like you have no one to turn to who really understands what you're going through.






I want to also say that the mental healthcare in this country is sorely lacking. It's gotten better from the asylums that were around at the turn of last century, but not by much. I've been in mental hospitals visiting people and they terrify me. They do not receive the adequate care that they really need. It bothers me how these people are neglected and not helped like they should be. It almost feels to me like they're locked in a room and forgotten because they are an embarrassment to society. We can do better. No one should be judged by their mental illness, period.






Anyway, I have a few stories to share from friends of mine who have dealt with similar things, due to their invisible chronic illnesses that I want to share. They were kind enough to share their stories with me so I will post them below.

"My journey living with Gastroparesis & DTP
By: Sarah (and copyrighted but I have special permission to use it)


Until now, I've had the heart but not the drive. The pain to turn into production, but not the passion as motivation... That all changed for me the night a friend wanted to be a lantern to instill light to my candle. I felt ashamed by what GP has taken, afraid of offending to explain its torture on my self worth & the emotional pain has held me back from being open with fellow sufferers due the the somewhat negative aspect of this disease has had on my life over the last couple of years.

MY STORY SO FAR PART 1

Nevertheless, I now am sharing with you my journey into unknown territory in the hope it may lessen the same lonely isolation for others, that I once felt. I had always been a nervous eater, sporadic appetite & bowels that were sensitive to upheavals & stress... I always thought everyone was the same. It began with tests for motility, barium swallow & X-rays.... I'd never heard of motility disorders causing conditions that made eating so painful, I had always believed I had IBS or colitis of my bowel, nevertheless here I found myself in consult with surgeons who wanted to place a PEG & I wasn't ready. I never went back for another consult, I was afraid & I never considered that although I had forced food down, that the reason it rarely gave me energy was because it wasn't being digested, these idea's just weren't my issue, so I thought. I had an obstruction that landed me in hospital as a child, it was a volvulus (twisted bowel) apparently from stress, but that was before I was diagnosed with the genetic connective tissue disorder called Vascular Ehlers Danlos Syndrome (https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome), as an adult 20+ years later...

It is Spring.... I have realized that although I'm aware of issues with my digestion increasing recently, I have no explanation for the weight loss since weeks before that would suffice my doctors enough to run more tests & neither do I want anymore days in labs at the local hospital. I'm tired, emotionally drained & yet I feel walking is my only hope to ease the discomfort & pain after eating my boiled egg, so I set off walking. I had not long lost a friend, a teenage mentor from complications to diabetes, causing him to no longer be able to attain adequate nutrition, he always had encouraged me to keep eating. Alex was a brilliant youth worker to me in an orphanage & I felt my emotions needed clearing after this tragic loss. I walked miles, I turned a corner as pain surged up my neck through my shoulders into my jaw from my chest, I stopped... took out my nitro spray & prayed it would give relief, the heart thumped harder the pain slowly subsided but the threat loomed & all the while I knew my nutrition was missing something, something vital for my heart to react this way. I managed to get home after stopping in at a shop for a drink of water, but later that night I knew I would need an ambulance.

The egg I had eaten earlier wasn't enough even though my stomach was distended & still felt full, I knew Something was terribly wrong. I dialed 000 & the ambulance came sirens blaring. I was whisked off to hospital where my bloods revealed via a PICC line that my potassium was dangerously low, possibly from vomiting, but more from lack of food. My stomach was really bad the week before, so I had hardly been eating...

MY STORY SO FAR PART 2

The next morning my doctors consulted with me, my poor intake of food & lack of potassium was affecting my heart rhythm in a life threatening way & they wanted to find out why my stomach wasn't emptying properly. My GES score was at 197 mins, this was done with cupric acid that Ai ate mixed into eggs & toast, then recorded by exhalations into 1/2 hourly bags, meaning I had severe delayed emptying time. I didn't think this was a major issue, I thought it was more an issue that I could only eat certain foods without excruciating pain & nausea.

I was admitted into CCU where further tests revealed Long QT Syndrome, Gastroparesis/Digestive Tract Paralysis & Dysautonomia (https://en.wikipedia.org/wiki/Dysautonomia). I was scheduled for a lower NG tube placement & feeds were commenced. It was hard, really hard accepting that due to my stomach issues, I was no longer able to rely on my stomach for my nutritional requirements. My kidneys did not store normal levels of potassium & in my case this was deadly. For weeks I was tube fed, months went by... those months became a year & 1/2, then two years.

Before it was decided best I had my tubes placed in the duodenal jejunal junction for best possible absorption. In the last few months leading up to now, my specialist told me this Christmas just gone he wanted me to give my system one last chance to gain some tone, he explained that when a muscle isn't used for any length of time it atrophies or wastes & the only way to retrain those muscles is to use them. An even harder exercise for someone with EDS. As I had already had to retrain my swallowing to ease eso-tracheomalacia.

I left with my fiancé after becoming teary, resigned to give my stomach & intestines one last chance to gain back some control I would only use the referral for the tube replacement if it became too much. Not wanting to give up over Christmas & New Year with family, each day I pushed myself to keep trying, all the while praying it would work & give back some muscle strength & better motility... I'm stubborn, I know it to be true & I never want to give up especially when I'm told if I do, then that is it. But for me to accept that maybe this was the best I would get my stomach, I had to hit rock bottom so to speak. In the time over Christmas & New Year the pain & discomfort has been so extreme that I have had to revisit the possibility of needing surgical intervention for my nutrition. Things have been exacerbated by a mass about the size of a clenched fist becoming more exacerbated by trying to eat & digest food. I have now two herniations one epigastric & the other umbilical & mow, this "mass" to yet be identified... this is my story so far....


MY STORY SO FAR PART 3
I lay here now after writing this, there may be gaps I hope those reading can understand, they are not intentional but the life of someone with this condition is a constant battle not to allow pain & discomfort unsettle their resolve to fight through. Have I got the strength to fight it & if so for how much longer? I'm not sure, but there is one thing for certain I won't go down easy, I'll give it all I have, if that brings legacy to all who have gained their wings from this dis-ease then so be it! This is for all who know the life we live & struggle forward anyway!& my darling Fiancé of whom I wouldn't still be here without."





My friend Shannon was brave enough to share her story with me:

"I was first diagnosed with PTSD bipolar depression when I was 11 years old after being brutally raped I was sent to a mental hospital and was there for 3 weeks while they tried to get my medication right and they felt that they had the right medications so they discharge me also at that time my mother left me with my grandma and took off I haven't seen her in 23 years my grandma is my supporter my rock my caretaker when I was little I got pregnant at the age of 14 had my daughter when I was 15 and I don't regret it at all my grandma helped me raise her so I would do it right she'll be 27 this year and she has A4 year old daughter my little granddaughter who I love so much and sometimes because of my illness and my depression I sometimes say that I would kill myself if I didn't have my granddaughter this disease has taken away so much I was a nurse for 12 years did medical research so I gave people experimental medication I traveled the country I'm learning about new studies and research and I even went out of the country to Canada and Dubai which was amazing in Canada we stayed in a castle I can't remember the name of it it was something French like something France it was amazing and we were there for 4 days I went to Denver San Francisco Dallas New Mexico twice it was amazing it was I was on top of the world I was making a very good amount of money. But then suddenly in 2008 I started vomiting and I couldn't stop my son was twelve at the time and he had to call an ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an NG tube in my nose and they couldn't figure it out so they told me to go see a GI which I went and saw dr. Lee Mitchell he's a blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tests to run.

so I had the gastric emptying study twice to confirm definitely that I had gastroparesis he put me on Reglan Zofran, Protonix, Phenergan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in end-stage gastroparesis and the only thing that was going to help me with the gastric pacemaker I had the pacemaker put in March 2nd 2014 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastroparesis they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to give me my results so I went looking for the doctor he came in and told me that my blood hemolyzed so he pulled the number out of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemolyze and it's no good so you don't know what my potassium levels are you don't know what any of my blood work is so when I called him out he felt bad and he's like well what if the VA give you and I told him zofran and Reglan I said and she didn't treat my pain.

I don't know if he felt stupid or what but not less than two minutes after he left the room I was given Dilaudid and Phenergan it was amazing it would I was on top of the world I was making a very good amount of money. But then suddenly in 2000 and a tie started vomiting and I couldn't stop my son was 12 at the time and he had to call and ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an energy to ban my nose and they couldn't figure it out so they told me to go see UGI which I went and saw Dr Lee Mitchell he's the blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tester run so I had the gastric tempting study twice to confirm definitely that I had gastro Brisas he put me on Redlands zofran, protonix, Phenergan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in in stage gastro prices and the only thing that was going to help me was the gastric pacemaker I had the pacemaker put in March 2nd of 2014 and 14 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastro Brisas they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to get me my results so I went looking for the doctor he came in and told me that my blood hemelyzed[sic] so he pulled a number at of his hat and told me my potassium level was 7 I told him how can you give me a number when my blood hemelyzed[sic] and its no good so you don't know what my potassium levels are you don't know what.

For some reason it's not letting me go any further. But anyway they didn't know what my levels were so he just threw out a number so I filed a formal complaint against them but I saw them I knew surgeon yesterday and he took my battery and it is completely dead which would explain why I went through a violent violent flare 3 weeks ago butt I have seen a psychiatrist after I was diagnosed and he's helping me with the correct mental medications that I need because of my disability paperwork and through my history I already know I was diagnosed with PTSD bipolar depression anxiety OCD and person with borderline personality disorder I get so sad and I cry all day long because this is taking away my career my family my children well one of my children says I'm a hypochondriac but we don't talk that much but I don't know how I can be a hypochondriac when they know I have an incurable condition which that makes me sit and cry and cry I am so anxious that I am on to anxiety medications I don't sleep and I'm on two different sleeping medications when I get sick my husband yells at me I think because he's scared but because he's over it because he's gone to the ER with me over a hundred times he's visited me over a hundred times he's traveled an hour and a half away to see me at two different hospitals this condition I'd rather have cancer then have this condition if I didn't have my granddaughter I'm mentally unstable I would kill myself."



Cheryl's Story:






Shannon's Story:

[sic]"Hi Emily it's Shannon L. I was first diagnosed with PTSD bipolar depression when I was 11 years old after being brutally raped I was sent to a mental hospital and was there for 3 weeks while they tried to get my medication right and they felt that they had the right medications so they discharge me also at that time my mother left me with my grandma and took off I haven't seen her in 23 years my grandma is my supporter my rock my caretaker when I was little I got pregnant at the age of 14 had my daughter when I was 15 and I don't regret it at all my grandma helped me raise her so I would do it right she'll be 27 this year and she has A4 year old daughter my little granddaughter who I love so much and sometimes because of my illness and my depression I sometimes say that I would kill myself if I didn't have my granddaughter this disease has taken away so much I was a nurse for 12 years did medical research so I gave people experimental medication I traveled the country I'm learning about new studies and research and I even went out of the country to Canada and Dubai which was amazing in Canada we stayed in a castle I can't remember the name of it it was something French like something france it was amazing and we were there for 4 days I went to Denver San Francisco Dallas New Mexico twice it was amazing it was I was on top of the world I was making a very good amount of money. But then suddenly in 2008 I started vomiting and I couldn't stop my son was twelve at the time and he had to call an ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an NG tube in my nose and they couldn't figure it out so they told me to go see a GI which I went and saw dr. Lee Mitchell he's a blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tests to run so I had the gastric emptying study twice to confirm definitely that I had gastroparesis he put me on Reglan Zofran Protonix finagrin and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in end-stage gastroparesis and the only thing that was going to help me with the gastric pacemaker I had the pacemaker put in March 2nd 2014 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastroparesis they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to give me my results so I went looking for the doctor he came in and told me that my blood hemolyzed so he pulled the number out of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemolyze and it's no good so you don't know what my potassium levels are you don't know what any of my blood work is so when I called him out he felt bad and he's like well what if the VA give you and I told him zofran and Reglan I said and she didn't treat my pain I don't know if he felt stupid or what but not less than two minutes after he left the room I was given Dilaudid and finagrin it was amazing it would I was on top of the world I was making a very good amount of money. But then suddenly in 2000 and a tie started vomiting and I couldn't stop my son was 12 at the time and he had to call and ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an energy to ban my nose and they couldn't figure it out so they told me to go see UGI which I went and saw Dr Lee Mitchell he's the blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tester run so I had the gastric tempting study twice to confirm definitely that I had gastro Brisas he put me on Redlands zofran protonix Finnegan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in in stage gastro prices and the only thing that was going to help me was the gastric pacemaker I had the pacemaker put in March 2nd of 2014 and 14 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastro Brisas they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to get me my results so I went looking for the doctor he came in and told me that my blood hemelyzed so he pulled a.number at of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemelyze d and its no good so you don't know what my potassium levels are you don't know what[sic]

[sic]For some reason it's not letting me go any further. But anyway they didn't know what my levels were so he just threw out a number so I filed a formal complaint against them but I saw them I knew surgeon yesterday and he took my battery and it is completely dead which would explain why I went through a violent violent flare 3 weeks ago butt I have seen a psychiatrist after I was diagnosed and he's helping me with the correct mental medications that I need because of my disability paperwork and through my history I already know I was diagnosed with PTSD bipolar depression anxiety OCD and person with borderline personality disorder I get so sad and I cry all day long because this is taking away my career my family my children well one of my children says I'm a hypochondriac but we don't talk that much but I don't know how I can be a hypochondriac when they know I have an incurable condition which that makes me sit and cry and cry I am so anxious that I am on to anxiety medications I don't sleep and I'm on two different sleeping medications when I get sick my husband yells at me I think because he's scared but because he's over it because he's gone to the ER with me over a hundred times he's visited me over a hundred times he's traveled an hour and a half away to see me at two different hospitals this condition I'd rather have cancer then have this condition if I didn't have my granddaughter I'm mentally unstable I would kill myself
I am so sorry that happened to you but I want to commend you for being brave enough to share your story with me. It will help other people. ❤[sic]

[sick]Thank you Emily I follow you and your notifications every day and I'm sorry that you have this condition too I'm sorry I'll everybody on the GP Pages have this condition Please share my story if you want to I don't have any friends I lost all my friends when I got sick I don't have anybody to talk to I sit around the house I clean what I can because I also have had one back surgery and 3 neck surgeries so I suffer from chronic pain so I can only you know clean so much I have to sit down I clean something but my house is super clean I don't know what to do so I just sit here and then I watch TV and that's depressing sometimes and I need to stop watching the news but I have you know all the news people on my Facebook I mean I do want to know what's going around in the world but I don't like this sad stuff and what's making me really really sad is that Trump is going to be our president who makes fun of disabled people who abuses women sexually and me being a rape victim Survivor that's a slap in my face I don't know if I'll ever get over my rape and that was when I was 11 so 30 years ago I don't have a therapist to talk to because I can't afford it but in my husband he keeps quitting jobs like crazy it's like he doesn't want to work but he has an amazing trade he's an AC man he can make a lot of money and he quit his job just recently and he was out of work for 2 months but he just started a new job this week so let's see how long he keeps that so I'm constantly worrying about money about our bills about me being able to get to the doctor on my surgery I have to pay my copay which he promised that we would have so this is my depressing life I have no one[sic]"
**NOTE: THIS IS NOT EDITED FROM THE ORIGINAL I RECEIVED.**


This is Christy's Story:

"I've been battling mental illness many years before I was ever diagnosed with any GI issues. When I was a teenager around 15/16, I was diagnosed with depression and was started on antidepressants. My depression was so incredibly bad I would remain in the basement watching movies and have no ability to do anything really. Going to school was challenging and I'd often end up calling my mom to come pick me up.

When I was 24, I was diagnosed with gastroparesis, eosinophilic esophagitis and IBS. I was experiencing major issues eating, digesting, and maintaining proper nutrition. At 26, I was diagnosed with Bipolar II disorder, which more accurately described my incredible depression that I was experiencing.

When I was diagnosed with GP, I experienced mourning for my former self that could eat normally. I realized that I would never be able to be "normal" again and it was very sad and caused my depression to worsen for a time. Eventually I adjusted and learned to accept my new self.

When I started seeing a new psychiatrist, the one who diagnosed me with BP II, I started adding several medications to my regimen. I also found that I was having issues breaking down and absorbing tablets. I started explaining this to my Dr, who tried working with me by prescribing capsules and liquids, but she made it seem like it was too much work as well as not necessary.

I'm 28 now and have experienced many different Drs reactions to my gastroparesis and BP II. It can be frustrating because they do not always understand the issues that come with the two co-existing, medication absorption, pills being choked on or stuck in my throat due to poor esophageal motility, as well as high probability of my pooping out whole tablets.

I'm lucky that today I have a wonderful NP that is handling my psychiatric end of things. She understands more than any other psych dr has, and even more importantly, listens to what I have to say about both my psych and medical problems. This is the biggest issue right now in the medical community, Drs don't listen to those who are chronically ill and do not take their experience with their own diseases and syndromes when making medical treatment plans. Just because we do not have MD behind our name, sure as hell doesn't mean that we don't know our bodies, what we generally need and especially doesn't mean we should be ignored.

Having mental health issues is tough but with co-existing GI problems, it creates a whole new world of challenges that most Drs aren't willing to look at overall, instead of individually. This leads to wrong treatments, under diagnoses, and bad medical care in general."