Location, Location, Location

A woman in a hooded coat and jeans, with a leather handbag over her shoulder, sits on a pavement's kerb. The words 'TPN warrior Melissa proves when it comes to getting a correct diagnosis, it can be all about...' and the feature title '...location, Location, Location.'

#LocationLocationLocation

Melissa Nichols lives in America – she also lives on TPN (Total Parenteral Nutrition).  Put simply, she has a port in her chest which delivers super-sterile liquid nutrition (often called ‘liquid feed’) directly into her blood stream close to her heart. It means Melissa must be hooked up to her supply for 16 hours a day. 

Melissa admits that she does sometimes feel self-conscious when she’s out and catches people staring at the tube coming out of her shirt and into her bag, and that lugging around a backpack with her ‘formula’ in it can be inconvenient. It should go without saying that being connected to her life-line for more than half of each day limits her activities too.  Despite all of this, Melissa is still grateful.  “They provide me the nutrition I need to survive.”

Unlike some in the Invisible Illness and Gastroparesis (GP) Communities, Melissa has understanding family and social circle, although it’s a bit hazy for some.  “It does confuse my friends’ kids but I try my best to explain it to them in a way they can understand.”

When it comes to children, we can overlook miscommunications or slips of the tongue, but it’s hard to forgive adults when they say something ignorant, hurtful or just plain dumb.  “I have had someone tell me that my TPN is poison and that I need to just try eating again but just eat healthier options. 

Before I was put on TPN, I had people just telling me that I'm not trying 
hard enough to eat, although every time I ate I was throwing it up.  I have had someone tell me that it is in my head and that I need to just see a therapist. 

On several occasions, people have asked if I have Anorexia Nervosa or Bulimia.  The most upsetting things though is what they don't say.  It is 
very hurtful when friends or family don't invite you out for things anymore because of your gastro health.”

Melissa’s words will be all too familiar to many of the #ysuTribe, and our other interviewees suffered similar insensitivity over the course of their illness too.  The insult and sting to these ridiculous statements becomes crystal clear when we asked Melissa if she can eat anything.

“No,” is her straightforward answer.

"People were telling 
me I wasn't trying hard 
enough to eat...
That is it in my head.

Someone said my 
TPN is poison."

Sip By Sip
She can drink a little, though.  It’s not uncommon for people with GP to throw-up the fluid they drink immediately or soon after swallowing, especially if they down a few mouthfuls.  'Safe drinks' vary from person to person.  What settles one stomach may trigger another.  For Melissa, water, ginger ale and Powerade are okay. 

“I also am able to sip on teas with no caffeine, such as peppermint or ginger.  I am not supposed to have any caffeinated drinks or juices with any kind of pulp.”

The cause of Melissa’s Gastroparesis isn’t known, so her diagnosis is Idiopathic GP.  She also has GERD, Bile Reflux Gastritis due to excessive bile production, and overall Intestinal Dysmotility.  Some individuals say surgery and damage done to their Vagus nerve set them down the GP road. Could this be the case here?  

“I began having symptoms and they took my gallbladder out. However, I never fully felt better after that,” Melissa explains. “My symptoms began to worsen and it was nearly a year after my symptoms worsened that I was finally diagnosed with Idiopathic Gastroparesis.”

It was hard for her to secure a diagnosis, and because she lives in a rural area, Melissa’s doctor assumed she had picked up a bug or even had some sort of parasite in her system.  Even the specialists didn’t get it right at first, and she was then told it was Irritable Bowel Syndrome (a potentially fatal mistake and assumption).  “Their treatment was actually making me worse. So they began the process to rule out conditions like ulcers and Crohn's Disease.  

It wasn’t until I was hospitalized for nearly a week, that a visiting Gastroenterologist suggested a Gastric Emptying Scan (GES).  That one test finally revealed my diagnosis of Idiopathic Gastroparesis.”

Up until she found out about her stomach paralysis, Melissa’s symptoms read like a checklist for GP - severe nausea, severe vomiting, bloating after eating (even if it was just a small amount of food), rapid weight loss, constant dehydration, eventual malnutrition and vitamin deficiencies, irregular bowel movements, extreme fatigue, lightheadedness and even fainting due to lack of nutrition.  Is it any wonder she ended up in hospital?

Before she was diagnosed, it reads like she was treated like a lab rat or twisted schoolkid’s science experiment.  “I tried LOTS of different medications.   I had several endoscopies with biopsies, a colonoscopy, several thyroid tests, ultrasounds of various female and digestive organs, numerous x-rays of digestive organs, CAT scans with and without dye, an MRI, too many blood tests to count, a barium swallow test, a barium enema test, and finally a Gastric Emptying Scan, GES, which revealed my diagnosis.”

Is she sure that’s all of them?

“I think that is all of them.  There were so many tests I may have forgotten some.”

The list of medications she has tried is mind-boggling too. “Once I was diagnosed with Gastroparesis, they gave me Reglan right away. Then they gave me Erythromycin.”

This is a very usual route for newly initiated GP patients. However, it’s one that didn’t work for Melissa and doesn’t work for many others either. “I was then prescribed Domperidone. I also was prescribed Phenergan and Zofran, both in pill form, for nausea as well as a proton-pump inhibitor (PPI) for acid reflux. I was also prescribed polyethylene glycol powder for constipation...”

Did you spot it? 

One problem people with GP and other Digestive Dysmotilities caused by things like Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders, for example, have when it comes to medication, is that their systems do not digest properly, and even things they do digest may not be properly absorbed, and patients end up missing out on any potential medical benefit. 

As with so many other lesser-publicised illnesses, cruel ironies appear to be par for the course…


Alternative Therapy?
“After my health took a downward turn in 2013,” Melissa continues, still not done with the array of pharmaceuticals she has tried, “I was prescribed Phenergan suppositories (Phenadoz), oral dissolving Zofran (and eventually IV Zofran).”  

It’s reassuring to see her medications were changed according to her digestive status, but you can also see the steady decline from pills to IVs as the options open to getting anything into a failing digestive system become fewer and fewer.  The list continues...

The drugs were obviously not working and more research and funding is needed in this 
area – urgently.

“Liquid Phenergan, IV Phenergan, Resolor (Prucalopride), Protonix, Carafate, Diclegis, Hyoscyamine, Lorazepam (for nausea), Pyridostigmine, Linzess, Amitiza, Escitalopram (for nausea), Nortriptyline (for nausea), Colace, and Phenergan gel.   At least that's what I can remember.  Since 2013 they have tried many different medications to get my stomach and intestines to work properly and to ease my nausea and vomiting.”

All of these are just from the past and don’t include the meds Melissa has to take now.  Notice the number of various antiemetic (anti-nausea) drugs she listed above.  The drugs were obviously not working and more research and funding is needed in this area – urgently.

Caught between a rock and a very hard place, how did her body react to all these?  She had a major reaction to Reglan, which was then stopped immediately, but again, things weren’t easy.  

“Erythromycin wasn't very helpful so that's why I was finally prescribed Domperidone.  The Polyethylene Glycol powder never really worked for me.  None of the antidepressant or anxiety medications worked except for the Lorazepam.  

The Pyridostigmine did not work at all. It actually made me quite ill. The Amitiza did not work at all.  The Linzess worked too well and I had such severe diarrhoea I was losing even more weight.  I had a reaction to the IV Phenergan so I can't use that.  The Phenergan gel also did not work…”  

In these sorts of circumstances, where everything seems to either make her worse or not work,  Melissa did try other things.  

Supplements such as Swedish bitters, peppermint capsules, ginger capsules, St. John’s Wort, magnesium and supplemental shakes such as Juice Plus and Vega One…She has tried them all.  Along with essential oils.  One thing seems to have helped?  “I currently use medical cannabis products.”
  
With a lot of the other supplements and shakes making Melissa’s nausea and vomiting worse, she says that the only thing that has helped is Medical Cannabis.  While some may still speculate on the validity of this, the scientific body of studies and evidence certainly supports that Melissa is not experiencing a placebo effect.  And let’s be honest, once you understand a little of her history, she doesn’t seem to have many avenues of help or relief left. 
 
“By the time I started using many of the alternative supplements, my digestive system was just too far gone.  The essential oils helped with other ailments but not my digestive issues.  

The only thing that has helped has been medical cannabis products.”



Location, Location, Location
Because of the rural location where she lives, Melissa had to do a lot of driving while dealing with terrible symptoms so she could get the investigations she needed.  

That makes things difficult enough without local doctors not really knowing what’s going on and having no useful knowledge of GP.

“By the time I used alternative supplements, 
my digestive system 
was too far gone. 
The only thing that has helped has been medical cannabis products.”

In America, though, there is another potential spanner in the works – Medical Insurance Companies...

“They would get one test back and it would be negative,” Melissa begins, “so they would have to schedule another test and get it approved through insurance.  That took time and lots of patience.”

Patience that paid off. Finally receiving a correct diagnosis has made a difference, and she has gone from guinea pig to a patient receiving appropriate care.  “Since I was diagnosed, there is much less 'let's just try this medicine and see if it helps'.  My treatment also involved appropriate dietary changes, whereas before diagnosis it was all about the medication and the dietary changes I implemented actually made me worse.  

After diagnosis, I also was able to go see a Gastroenterologist who specialized in Gastroparesis and he offered cutting edge treatments like pyloric Botox injections.”

Pyloric Botox injections involve Botox being injected into the pyloric sphincter, the ring of muscle at the bottom end of your stomach that opens and close, so that it relaxes and allows food and fluid to leave the stomach – instead of sitting there decomposing before being vomited back up.  

The first doctors she saw may have dragged their heels in terms of underperforming and getting to the root of Melissa’s problems, but she says there are at least five medical professionals she would recommend, one medic in particular – a Dr Patrick Waring, a Gastroenterologist in Atlanta.



Final Word
The last thing we asked Melissa was what she most wished people understood about what it’s like to have Gastroparesis.  Here are her closing thoughts.

“I think in some ways, especially for those with severe Gastroparesis and Dysmotilities, or for those with feeding tubes or TPN, friends and family start to treat you differently, and not in a good way.  

They stop inviting you out to do things.  They stop visiting you as often.  They stop talking to you because they feel like you have enough to deal with.  Friends and family, don't do those things! 

Keep inviting us out.  Will we have to say no sometimes?  Yes, but keep inviting us out anyways because sometimes we will say yes!  

Keep visiting.  Keep telling us about your lives.  Yeah, having a Digestive Disorder can be a burden, but that doesn't mean that we don't want to hear about your day or your problems.  We may have new limitations, but that doesn't mean our personality or our spirit has changed.  I still want to be that friend you complain about work to.  

I can still come over and hang out at your house without having to eat.  My energy level may not quite be the same, but there are still lots of things we can do together to have fun.  Be the friend or family member you were before I was diagnosed. 


Also, I think I would want people to understand that although we have these conditions, they do not define us. Rather it is how we deal with our condition and the challenges that come with it that define us.  

Problems don't define us.  It's our ability to overcome them that does.”   


Written by #ysuWords. 
Email media@youseeus.org for syndication permissions. 

During her interview, Melissa also gave us some GP hacks, and you can read those and the others we were given by our interviewees in our feature GP Tips.
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