sweeneykitkat's Blog

Wasting Away

Boo!

My name is Jessica Faye Charlene Watters, though I have many nicknames among my loved ones such as Chuck, Charlie and even Cubby from my twin younger brother and sister. I hope that by sharing my situation I may bring awareness to a very dangerous medical condition that I'm currently experiencing.

Back in 2009 I was just an ordinary Canadian girl living in Ottawa, Ontario with my best friend. I attended college while working at my favorite movie theatre (was employee of the month May 2009, just 1 month after being hired). I was making the transition from Animation to possibly Scriptwriting after achieving a certificate in Pre-animation/Illustration; my dream being to at least release an on-line comic of the storyline my roomie and I had been developing the last several years. 1 year prior I had learned from some blood tests that I have a Hypothyroid and had began treatment for it. It was a little distressing to hear but also explained why I had been sick so often as a child, the condition weakening my immune system; however, I never could have predicted what the future had in store for me . . .

- Constant abdominal pain

- Constant Nausea

- Vomiting (inability to keep ANY food down)

- Low Potassium, Magnesium, & Iron

- Muscle aches and weakness

- Hypersensitivity

- Insomnia

- Dehydration

- Abdominal Bloating

- Stomach Distention

- Unintended Weight Loss of 120Lbs

Sadly the above list has been my life for the last 3 years, a diagnosis only being found 1 month ago. I suffer from a condition called "Gastro paresis". Simply explained, this is a disorder that slows or stops the movement of food from the stomach to the small intestine. Within our bodies is the vagus nerve that controls the muscles of the stomach that normally contract to break up food and move it through the gastrointestinal tract as well as the hormones and enzymes that helps us digest food. Gastroparesis occurs when that nerve becomes damaged by injury/illness and the stomach muscles cease to contract normally. This slows or all together stops movement of food from the stomach to the small intestine.  

                As mentioned earlier it all started late 2009; I had bronchitis as the winter weather came which carried on into November just as H1N1 (swine flu) broke out. With my thyroid condition and my body already weakened it wasn't too long until the swine flu became an issue as well. As others around me gradually got better my symptoms continued to worsen. My occasional fits of abdominal pain became a constant, like someone's elbow being pushed into me or a monster thrashing about inside, I can no longer eat without the pain increasing and spreading to my left side, joined by a tightening and pushing sensation  literally forcing my food back up. This is sometimes accompanied with lots of acid, another dimension of pain revealed as my right side throbs heavily. This can even happen with water if I'm not careful. I feel the abdominal pain when I try to sleep, a spasm that feels like a monster inside tearing my innards up. I'm now on a constant pain patch to help keep the pain from completely incapacitating me and sending me to ER which has happened several times. I never knew I could hurt so much.

The worst ordeal was on July 13th during my 10 day hospitalization when I had to have a feeding tube inserted through my nose, bypassing my stomach and into my small intestine; the feedings were not staying in and I vomited a deep dark green. It was extremely painful which lead to a 7-9hr period of excruciating pain throughout my body. After being heavily medicated the pain slightly subsided. On July 15th it was discovered that the tube was no longer in my small intestine but up in my chest. It had to be removed immediately.

I've had numerous trips to ER for dehydration, and low potassium, once being told I couldn't leave the hospital because I could drop dead at any moment. I have lost approx. 120lbs, leaving my 5'7 figure gross and boney at the current weight at 88lbs. My bones and muscles ache, and I have hypersensitivity to touch and temperature. Some days I have just enough energy to do some stretches and light exercise; many days the pain and weakness make it impossible to even get out of bed. Almost every test imaginable was conducted to determine what could be causing all of this. A CT-scan in late 2010 showed the physical presentation of Superior Mesenteric Artery Syndrome, a rare life threatening disorder, though my doctors believe further testing dismissed the mechanical presentation. The diagnosis of Gastro paresis was finally found with a Gastric Emptying Study first performed November 2011 and again October 31st 2012.  This was conducted by eating a single piece of toast and an egg treated with minimal radioactive material, then over the period of several hours images are taken to track how the food empties from the stomach into the small intestine. According to my report these are the average percentages compared to my results:

                1 hr normal: 37-90% mine: 99%

                2 hr normal: 30-60% mine : 88%

                3 hr normal: 0-30% mine: 54%

                4 hr normal: 0-10% mine: 44%

I was told by my Gastroenterologist that the motility has worsened since the last test.

I worry about malnutrition, infection and possible complications that could be developing such as my hypokalemia (low potassium). I desperately have fits of anxiety, I've heard of different treatment options but I have yet to find anyone who's 100% recovered. I had read a recent news article reported Utah's 18-year-old Haley Stonehocker passing away in her sleep from the same condition; this is a mystery to the medical world at this point and desperately needs more investigation to prevent anymore loss of lives and ease those suffering.

I try to have a normal life, though this condition has made it hard to make ends meet, taking me away from my schooling and job with rent, debt. medications and basic living requirements. I try to keep myself busy with my art. I'm constantly hungry, though the pain from eating can make me weary. I try desperately to get the weight back on so I bare through it; cooking is actually my passion so I bake and prepare fun, yummy meals for my friends and family. In the past some suspected bulimia and anorexia, which cut into me deeply. I was a proud, happy woman back in 2009. I've never measured the value of myself or others by weight. I have seen two psychiatrists who have completely ruled out eating disorders. I explained to them all of the emotional issues that have come hand and hand with this, such as insecurity being around others and nightmares and my first one explained how starving children he dealt with while he worked in the military experienced the same state and that once my condition progresses my emotions should return to normal.

 I appreciate all of the love and support my family and friends give me. They do so much I cannot even begin to thank them enough. So many trips to ER, words of encouragement, shoulder to cry on and reasons to laugh, I would give them the world if I could and it still wouldn't be enough. If my own pain wasn't enough, I hate for my loved ones to have to suffer through this. After 3 years, I prey there's somebody out there who can help me.   

Thank you for taking the time to read.

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melissaw72

I'm sorry you are going through this.

Here is a link that talks about treatment/meds etc that might help.  Have you exhausted all medications to help?

http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=treatments-and-drugs

http://www.medicinenet.com/gastroparesis/page4.htm#how_is_gastroparesis_treated

Have you had a complete endoscopy to rule out other things ie tumors, bowel obstruction?

I wish you the best.

Melissa.

 

 

sweeneykitkat

Thanks for the links!

I've been tested for everything else, had 3 endoscopys, several cts, mri's, ultrasounds. I even had to have a colonoscopy attempted twice (the first one was unsuccusful due to how bad my system was) which apparently showed that my large intestine had cuts and blood in it. I sometimes wonder if my gallbladder is also an issue, due to acid, and the constant right pain and my family's history of it, but the doctors have ruled it out. :(

I'v tried domperidone, maxeran, and erythrimicin all with bad side effects and no relief of my symptoms. My GI said that if those didn't work he doesn't have any different family of drug. He also added that apparently these drugs are dangerous to me because of my hypokalemia (low potassium) and could actually kill me due to complications they can cause to the heart.

I've also tried adjusting my diet in every which way, working with a nutritionist and still no difference. For the emptying test I had to eat an egg and 4 hrs later it was thrown up with bile.

I don't want any tubes, after having the nj tube for 10 days, I had never been in worse shape physically. Like, I couldn't move around, I was just bed bound until the incident with the tube coming up into my chest. That scared me out of getting a peg tube set up, but I went home and built my strength back up.  

I try to eat by mouth, keep in what I can for as long as I can.

sweeneykitkat

I've also tried practically EVERY anti-nausea med!

melissaw72

Can you get a second opinion?  Sometimes another DR might see things from a different perspective and might have ideas that your current GI DR has not had.  Kind of starting from a "clean slate."

Melissa.

sweeneykitkat

The GI I have now is the 2nd, the first thought I was faking it all.

I saw a surgeon at the end of 2010 who diagnosed me with SMA syndrome and was preparing surgury, then got a 2nd opinion who said even though I had the physical presentation he didn't believe it was mechanically shown (he felt a upper gi series without a small bowel follow through disproved it, though I here the SMFT is one of the gold standards for determining the obstruction. I then saw 2 more surgeons, 1 who really offered nothing at all and 1 who believed in sma syndrome, also thought I didn't mechanically have it and wanted me to undergo motility testing. This was how I came to my current GI, who for the first 3 appointments thought my overall problem was unexplained weight loss, sees me months at a time even after a ER trip had doctors demanding him to see me the next day, and apparently had the test proving I have GP since last year, but becuase I threw up he originally classified it as inconclusive. My most current one says the motility has actually gotten worse since last year. *sigh* I'm so tired . . . and what I hate the most is . . . I'm honestly not convinced SMA syndrome has been comepletely ruled out. I mean, they said they've done everything to rule it out, but I had an internist request a small bowel follow through and my GI wanted and MRI instead, because apparently it's "newer". The small bowel follow thorugh uses a thick milky substance called barium, while and mri uses a thing liquid, so obviously the thinner liquid isn't going to cause as many issues on the test . . . *sigh* . . . I'm sorry to rant. The narrowing between my superior mesenteric artery and aorta measued 7mm and is 1/2 of what it should be according to a CT Dec 2010 when I weighed 150lbs; with my weight now at 87 I can only imagine what it is now, but they don't even measure it when preforming tests . . .

sweeneykitkat

I'm litrally crying while I play the last 3 years over in my head again . . .

KimBizz

I feel your pain literally.  I too have gastroparesis and the pain is unbearable most days.  I was diagnosed in 2009 but have been very sick for many years before that.  Hang in there I will pray things get better for you.

sweeneykitkat

Kimbizz: I hope things are well for you. Most days are deinfilt tough but loved ones definitly help us get through (I also use my art.).

Bbopsmom

When reading your story I felt like you were telling my story.  I have diabetes (22years now) and along with the other complications that have come about I was diagnosed with gastroparesis.  Just like most people I had never head of it.  After 10 years of er visits, hospitals stays, missing work, missing out on life, being asked if I was suicidal, I was given the name of a doctor at Vanderbilt University who quickly became my angel.  His name is Dr. Willie Melvin. He offered me a potential solution to a problem that had practically stopped me from living.  He suggested the Gastic Stimulator/Pacer from Medtronic.  I took him up on this and as of January 2011 I was given what to me has been a second chance at life.  I go in for what I call a tuneup every several  months but I honestly feel ALIVE again.  This may not be for everyone but if you are where I was you are open to pretty much anything that gives you HOPE!!!  I wish the the best!!!

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