Posts are usually published according to the order my diseases progressed.. However, to digress on certain parts I will fast forward ahead of time & return to the previous topic..
Regarding this particular disease, my story was briefly featured on Rare Diseases SA’s blog in August 2017. This is the link for those who may have not read it.. There a couple of typing errors with too many “&” as I had a migraine while typing it so please excuse.
Here I will elaborate more for understanding purposes.
There are people experiencing similar types of symptoms but are finding it difficult to recieve an accurate diganosis due to a lack of neurological expertise from “neurologists” themselves…
With the hope this may be a better guide to patients struggling & drs who dismiss patients with these kind of symptoms, here goes…)
[ SYMPTOM 1 ]
*Wondering & thinking each time i eat*:
I feel hungry but once 4 or 5 morsels go down, I’m full! Already?? This is weird? I’ve never had an appetite problem of this nature previously. If I try eating only 1 more morsel I become nauseous. Not on any medication so no side effects could be playing a role in this…
Same issue with liquids, previously I could drink any amount without needing a limit.. Now after a few sips or maximum a quarter glass – full.
After feeling full quickly I’d become hungry just as quick & think now I’ll eat better, no luck though (later termed by my neurologist as early satiety)
Mom: “Why are you eating so little?”
“I cooked your favourite meal…”
“What’s wrong with it?”
“Do you not like it?”
“Must I cook it differently?”
As a small child I was a lazy eater & gave mom a hard time.. She would try all sorts of methods & things for me to gain an appetite, most to no avail.. 🙈
However once i grew bigger to the age of 9 it returned back to normal because with the load of memorization & school work I’d become hungry & eat well.
So when this issue began we were all baffled.. Both thought perhaps I’m sort of going to back that phase but also realised it cannot be, because this is different from that time.
Many people would continously remind me to eat because without eating properly how would my body gain strength? A fact of truth no doubt! But my case differed & we knew not why.
Lots of people thought I’m going into depression after momma passed on but that was never so. Natural grief was there but it didn’t continue to an extent where I lost total desire to eat.
It became irritating to hear the same thing being repeated often so 1 day without meaning to, I said: “Stop forcing me to eat, I do not know why this is happening! Something must be wrong, stop assuming all kinds of things & let’s go see the reason!
[ SYMPTOM 2 ]
Vomiting began.. The little food that went down would reverse its way back up immediately. Sometimes after a short period.
When we decided to go see the Dr, he termed it as Gastroesophageal Reflux Disease (GERD). For short periods I was prescribed medications in the form of Lansoloc, Prisolec, Nexium – which inhibits reflux.
[ SYMPTOM 3 ]
Bowel movements became erratic. It alternated between constipation & diarrhoea.
I could go for days up to 2 weeks in sequence, with not one bowel movement despite trying foods with fiber which in turn does not digest either.
Constipation brings along a variety of other symptoms such as loss of appetite, sluggishness, migraines, extra bloatedness & an over all uncomfortable feeling.
Diarrhoea on the other hand is accompanied by cramps & weakness.
[ SYMPTOM 4 ]
Estimated according to my height & body structure I supposed to weigh approximately 52 kgs.. Was on 51, dropped to 49, then 47, then 45, then 43, then 41. Remained on 41 for a few months once I learnt to manage my diet with medication. Recent flares dropped it down to 38.
[ SYMPTOM 5 ]
Cramps / severe abdominal pain.
[ SYMPTOM 6 ]
Bloating without constipation.. That I always say, makes me look sometimes as if im 3 or 4 months pregnant 🙊 lol. No exegeration. Mini tip: Loose / broad tops conceal the bloated tummy thus averting stares & questions
[ OTHER SYMPTOMS INCLUDE ]
Belching, burping, heartburn caused by indigestion, a nauseated feeling for long periods of time without vomiting. Morning nausea would be oddly worse sometimes. Body aches.
[ HISTORY OF DRS & TESTS IN SEARCH FOR A DIAGNOSIS ]
The first dr who provided the initial Neuropathy diganosis & GERD, thereafter handled me harshly.
February 2017 I landed up in his practice ( part of a hospital ) with a major flare extremely weak & dehydrated from not managing to keep anything down not even water.. This flare caused ulcers to come about which haven’t yet disappeared.
Immediately I was put on a drip while he ran a couple of tests including a Barium Swallow.
As mentioned before, symptoms are intermittent, each day is different! Therefore on that particular day the liquid did not come up despite manoeuvres challenging it to do so.
After the test results showed clear he said:
“The food has to go down, I don’t see reason for it not to go down. You should start eating, we cannot tolerate this!”
Calmly I replied: “But Dr I’m trying my best, Im trying all I can, I’m trying hard for so many month’s. It gets stuck halfway. Please tell me what do I do??”
Dr *shaking his head*: “No! No! No! It has to go down, it WILL go down. You go home & start eating!”
Dad: “Dr I’m not taking her part but I see how she struggles unintentionally. If you telling her to get it down, give her a medicine or something to make it easy.”
Dr: “Go home & start her off with small portions of soft foods like mash, soft rice etc.. she MUST get enough liquids down. Keep me updated, if that also does not work bring her in next week, we’ll do an upper endoscopy & admit her to put a feeding tube in the stomach.”
That night i returned home late, drained, dejected & utterly confused!
Everyone awaited to hear what transpired hoping for good news only to recieve the opposite.
Gastroparesis was suspected from a few months, NOT because I googled! It was explained to me by members of support groups I joined to learn more regarding my condition. Learning from experienced people living with the same condition provides more help & information I recieved from most drs put together.
Important to note: Many related their Gastroparesis was not proved with a mere Barium X-ray! The next test a dr should step onto is a Radioisotope gastric-emptying scan.
Unfortunately this dr is very rushed, takes on too many patients, unable to do justice to those cases needing extra attention & failed to dig deeper than 1 X-ray.. Many Drs I went to thereafter followed suit with his statements. After stepping foot out of his practice i vowed never to step back in again.
During the 1 week given I sought urgent help from fellow GP warriors who advised me how to go about an eating plan & suggested various types of medicines to assist the digestion process. If the advices provided still did not work I would then go in for a feeding tube.
Many people made me afraid by only telling horror stories about feeding tubes, everything that possibly goes wrong with it & how my life will be eternally changed… No doubt, I agree & know it was done out of concern but it’s important to bare in mind I needed to hear encouragement if things went spiralling out of control & I had absolutely no option.
Simple statements from support groups like:
“We hope you don’t have to go through that but if you do we are always here to assist whichever way we can”
“Don’t be afraid, you will get through this nicely”
“We will guide you through this”
“You’ve got it”
“You are granted strength to handle this Kay”
These statements provided motivation!
A senior medical professional from the US, sent a personalized T-shirt saying when you go in for surgery keep it close to you in hospital, it will provide comfort… A gesture which touched me deeply!
All the little acts of kindness & few words of support during that period made things a lot easier to grasp.
Contrary to a Dr I went to for a second opinion who told me *with hand actions* “you must keep on telling your mind the food is going to go down!”
That was the most hurtful statementtold by a dr with whom I thought i built a little understanding.. The implication meant was clearly obvious..
It got dad so furious, while returning home from the appointment. His mind was so consumed with the miscontrusion and nisassumptions, without realising he drove into an oncoming lame of traffic until we were almost sandwiched between 2 cars. Divinely saved that day!!
Usually dad is the most careful driver & always giving the 2 younger brothers lectures regarding their driving skills 😂… Second bro has a habit of mimicking dad’s driving manner saying “so careful & slowwwwwwwwwwly like this lol”
Oh Drs who do such things to patients desperately seeking help! I ask you to ask yourself which sane person tells his / herself to vomit purposely?
Which sane person does not want to eat their favorite food while everyone around is eating?
Which sane person says to the food “get stuck & don’t go down”?
I do not hold onto baggage of the past but that was a very cruel thing to assume & utter!
Heartfelt thanks & prayers to Dr Yasser Motala who provided clear cut advice for me to understand what is actually going on..
Based upon the results of a scan which showed my carotid arteries are not functioning properly he explained: ( I am cutting out details so it does not sound too complicated )
It is clear that you have a Vagus Nerve Disorder. This is most often linked with Gastroparesis. The vagus nerve traverses through the carotid sheath.
Please check this forum where patients have reported their symptoms hoping for clarity. This may provide some answers.
(May I add to clear confusion, the vagus nerve is part of the Autonomic nervous system so VND is part of Dysautonomia)
(Kindly click in to see properly)
These 2 screenshots are to give an idea how the vagus nerve looks
Think of it when you eat
After further discussions, I came to a satisfied conclusion!
Relieved to recieve logical explanations!!
As requested I have provided a comprehensive coverage but if anyone wishes to read more here is a link
[ MY DIET PLAN ]
✖ No strong spicy foods.
✖ No heavy foods / foods rich in fibre.
✖ No meat even it’s liquidised or made fine.
✖ No pastas. I was told it takes 3 days to digest in a normal persons stomach 😮 imagine mine’s then… When I do cheat my stomach becomes completely immobilized & constipated for days on end.
✖ No meal replacement shakes because I’m allergic to maltodextrin which most of them contain.
✖ Before I had a very sweet tooth, now too much sugar or honey makes me nauseous. Half or 3 quarter less than the normal amount stipulated in a recipe is fine.
✖ No pastries or baking with too much butter.
✖ No lentils.
✔ Talbinah – barley drink or porridge provides a tremendous amount of physical & emotional strength.
✔ Smoothies are good for people whos stomachs can tolerate it but I cannot.
✔ Veggies – a different one cooked each day. I search for new methods of cooking ideas so I do not tire of eating the same recipes all the time because options are limited.
✔ Runny mash & soft potatoes.
✔ Small rice grains smashly cooked.
✔ Salt, pepper, little garlic, ginger, herb seasonings & a teeny weeny bit of cayyenne pepper.
Liquids are drunk few sips at a time in small quantities.
Herbal teas like spearmint, lemon, peppermint, ginger & lemongrass aids digestion.
I eat 5-6 mini meals a day. The concept is smaller portions eaten more frequently.
[ MEDICATIONS ]
Kindly take note I am only mentioning it for information purposes. If interested in anything first consult with a dr / alternative practitioner.
Or private message me & I will provide details of the people who prescribed & approved of them for me. We don’t want disasters with self prescriptions here.
No eating without these medications:
- This is my main savior from a feeding tube. In place of Reglan & it also prevented my weight from plummeting further
2) For cramps & ulcers
3 + 4) For indigestion & heartburn
5) For constipation
6) 1 teaspoon of this
7) For GERD any pure Apple Cider Vinegar or baking soda works…
- Big tablets do not digest so majority of all my meds are in liquid form. Those in capsules are taken out & swallowed with juice.
Including for fun sake, below is my food bag that gets carted along wherever I go – weddings, braais ( barbeques ) & shopping trips..
Flare ups are normal from time to time & most meds fail to work during these periods but I’ve learnt to adjust & know well what my “vagus nerve” is ok with / when it becomes irritable & “protests” against me.
It is important to keep a check on dehydration during flare ups.
Each chronic illness comes with a package of additional “side effects” & with GP these are the kind of negative comments i deal with..
“Put on weight & stop being so skinny”
“It’s nice to be thin. But this is too bad! You need to put on weight, are you on a diet?”
“Look at all your bones sticking out” As if I don’t look at them every day when dressing haha!
“Your stomach is so bloated?”
“Just try to eat it”
“You missing out on such divine food”
These are a few examples said by people who know I have an eating problem.. Initially I used to remain quiet or try to explain but learnt it’s not worth it so now i reply bluntly not meaning to be rude but to convey the message that weight loss / gain is not in my control. Don’t be nasty.
Some are not even nice to mention openly.
Questions & weight loss comments out of concern are welcomed anytime but you will be surprised how many say it mockingly!
Tubies as we say or fellow warriors with feeding tubes have unique stories to share. I will try to feature a story of one soon.
Living with GP is like being caught in rip current. Most days the waves of nausea remain high 🏊
& That’s why I say GP stands for GREAT PHIGHTERS
Not everything in life is gained easily
Striving to attain a degree in whichever career it may be, requires effort, burning the midnight oil & patience to succeed..
Now draw a similitude
The unimaginable bounties of paradise cannot be attained easily..
It holds a costly price
A price of illness, poverty, loss of lives & all types of hardship
Patience through these afflictions will secure it’s ticket of entry..
When I see family members or people around me enjoying foods I cannot eat🍕🍗
I silently pray that if not again in this world, one day I will be awarded a position in paradise to enjoy all the foods & delicacies from which I have to abstain here.
If this life had to be perfect
Paradise would loose its value