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Wednesday, January 18, 2017

Mental Health and Gastroparesis Part 1

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. My own sister 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."





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