I saw four professionals

for my stomach

symptoms before

receiving a diagnosis.

I would recommend

Dr  Mouen Khashabe.

My symptoms were severe nausea, severe abdominal pain, lack of appetite, chest pain, dry heaving and weight loss. I had extensive lab work, EGD, H-pylori blood and breath test, blood tests and extensive lab work, and I changed me diet and medications. Fortunately, these tests were easy for me to get.

I’ve tried most motility medications, had several liquid and solid GES (Gastric Emptying Studies) tests to monitor progress, tried almost every nausea medication, tried several painkillers, Botox injections, had my Gall Bladder removed, tried acupuncture, herbal remedies, had a transpyloric stent placed and had a GPOEM.

My symptoms were severe nausea, severe abdominal pain, lack of appetite, chest pain, dry heaving and weight loss. I had extensive lab work, EGD, H-pylori blood and breath test, blood tests and extensive lab work, and I changed me diet and medications. Fortunately, these tests were easy for me to get.

I’ve tried most motility medications, had several liquid and solid GES (Gastric Emptying Studies) tests to monitor progress, tried almost every nausea medication, tried several painkillers, Botox injections, had my Gall Bladder removed, tried acupuncture, herbal remedies, had a transpyloric stent placed and had a G-POEM.

I saw four professionals for my stomach symptoms before receiving a diagnosis and, in terms of getting help, I would recommend Dr Mouen Khashab (a EGD specialist and innovator in Gastroparesis treatments) and other motility specialists at Johns Hopkins, as well as the GIs at VCU.

Some doctors don’t seem to understand weight gain and GP.

More

Conditions

Stomach paralysis isn’t the only medical condition I have. I also suffer with POTS, asthma, two pituitary micro adenomas, migraines, Fibromyalgia and Bipolar Type II.

In the past I’ve been prescribed 13 different medication to try to control my symptoms. Some worked okay but had bad side-effects, others didn’t help at all. None of them made me feel worse, except from the trigger point injections that were painful but helped. I’m currently (2017) prescribed a different 13 meds.

I’ve tried alternative therapies too – acupuncture, trigger point injections, turmeric pills, ginger tea, ginger pills, ginger drops, peppermint oil, peppermint tea, frankincense oil, the relief band, the sea band, Swedish bitters, kombucha, aloe vera, probiotics, acidophilus and magnesium.

Ginger helped some, the smell of peppermint oil too. Ibergast helps a little and trigger point injections helped for a while, and the relief band helps a little.

I’ve nearly had a feeding tube twice, but a the moment I have a fairly normal diet because of transpyloric stenting. Before the stent, I had many times I could only drink liquids (Gatorade and Ensure).  Was also on a semi-soft diet several times as well. I rarely could eat meat, never raw fruit of veggies, rarely cauliflower broccoli, beans and just a few fats and fibres.

Before the stent, I ate mostly carbs. Some days, even ‘safe’ foods and liquids cause severe symptoms. I can now eat cooked veggies and fruits in smoothies, eggs, dairy (Greek yoghurt, cheese, cream cheese), meat, low-fat ice-cream and frozen yoghurt, melons and all (non-wheat) carbs. I still follow a very low fat, low fibre diet.

Before the stent, I ate mostly carbs. Some days, even ‘safe’ foods and liquids cause severe symptoms. I can now eat cooked veggies and fruits in smoothies, eggs, dairy (Greek yoghurt, cheese, cream cheese), meat, low-fat ice-cream and frozen yoghurt, melons and all (non-wheat) carbs. I still follow a very low fat, low fibre diet.

Liquid-wise, I cannot drink fizzy beverages (unless they’re lightly carbonated), cold water or anything with artificial sweeteners in. I can manage lukewarm water and some juices (not orange or apple).

I do have some tips for people new to dealing with gastro issues:

• If you think something is wrong despite treatments, continue to try new doctors. Don’t stop trying new treatments and doctors until you find something that works for you.

• What works for one person may not work for others.

• Remember that you are strong and you are a fighter!

• You are not alone. 

Just...No!

There are some things that people with Gastroparesis (and other chronic conditions) don’t need to hear from others, as some comments are hurtful in many ways. Some of the things I hear quite

often are: 

• ‘Well, you look great.’

• ‘It could be worse/others have it worse than you.’

• ‘You’re lucky you’re losing weight.’

• ‘I had Morning Sickness. I know how nausea feels.’

• ‘I had surgery once. I know how what it’s like to live in pain.’

• ‘I was going to text you to see if you were coming but I didn’t bother because I knew you wouldn’t come since you never do...’

•  ‘Stay busy, you’ll feel better.’

• ‘Try exercising.’

• ‘I used to take pills all the time and now vitamins help me, so I don’t have to take any.’

• ‘Try this...’

• ‘You need to get out more.’

• ‘You talk about your sickness too much.’

• ‘You need to stop taking so much medicine.’

• ‘Your doctors should take you off all your meds and you’ll probably feel much better. They’re probably causing your problems.’

• ‘My stomach acts up too.’

• ‘Hope you get better soon.’ (as if it’s a cold and will go away).

• ‘You’ll have kids one day.’

• ‘Once you have children, you’ll be able to handle them. You won’t have time to be sick.’

• ‘You’re too young to have that.’

• ‘If you just stopped eating X,Y,Z...’

• ‘Well, what did you eat?’

Sometimes, it’s what people don’t say that hurts more:

How are you doing?

Can I do anything to help you?

Do you need anything?

I’m here for you if you need anything.

Do you need me to pick your meds up for you?

How did your appointment / tests / scan / procedure go?

In a world where #BeKind temporarily took over, it seems that some people still need to lace their words with empathy and sensitivity when it comes to those suffering with life-changing and life-threatening conditions like Gastroparesis.

Not sure why you shouldn’t say some of these things to people with GP and other chronic medical conditions...? 

...Check out ‘Just...no!’

from #YouSeeUs.

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word submitted in 2017