It has been over 7 months since I
was diagnosed with Gastroparesis, so I thought it’s probably about time that I
started attempting to get my confused, fuzzy brain around it. For me this means
getting all of my thoughts out onto paper (ahh fresh internet paper) in order
to make some sense of something that is utterly confusing and something that I’d
much rather ignore. Unfortunately Gastroparesis doesn’t like to be ignored
though! (Cont)
I should probably warn you now,
Gastroparesis isn’t sexy (but what illness is?). What I mean by not sexy is it
involves vomiting, diarrhoea, bloating, pain, dehydration, mushed up food and a
hell of a lot of tears! It’s all part and parcel of this shitty complication (no
pun intended!) and sadly it comes with some pretty gross stuff. So to all of my
readers… I’m sorry.
This blog is called from the top
because it has taken over 6 years for my Gastroparesis to be diagnosed and,
since I’ve started talking about it online, I’ve realised that lots of other people
with diabetes have similar issues and haven’t been able to resolve them. So in
a way I’m hoping that the blogs I write will help to raise some awareness about
this condition. It still amazes me that this is a complication of diabetes yet Dr
Google (other Drs are available) and myself are the only ones who spotted it.
Sadly Dr Google can’t offer me diagnostics or treatment, hence why I’m writing
this 6 years later than I should have. However, now the answers are officially on
paper, stamped, signed and in my ever expanding hospital notes, I can finally start getting some help.
I'm not invincible
My past,
as many of you know, included me being an incredibly stubborn teenager and adult
and neglecting my diabetes management for a very long time. This resulted in
consistently high glucose levels, ketones and admission after admission due to
DKA (Diabetic Ketoacidosis). At the time I was unable to see the damage that I
was doing, thinking that I was invincible (as you do when you’re younger) and
setting myself up for a nasty fall in the form of a complication.
Here’s a bit about Gastroparesis
that I stole from the internet:
“Gastroparesis
is a disorder affecting people with both type 1 and type 2
diabetes in which the stomach takes too long to empty its
contents (delayed gastric emptying). The vagus nerve controls the movement of
food through the digestive tract. If the vagus nerve is damaged or stops
working, the muscles of the stomach and intestines do not work normally, and
the movement of food is slowed or stopped.”
Symptoms
include; Heartburn, nausea, vomiting of undigested food, early
feeling of fullness when eating, weight loss, abdominal
bloating, erratic blood glucose (sugar) levels,
lack of appetite, gastroesophageal reflux, spasms of the stomach wall. (American Diabetes Association).
I’ve
highlighted my symptoms in blue but what isn’t often spoken about is D&V
caused by constipation, then followed by constipation, followed by D&V,
leading to dehydration, causing ketones etc etc. Sexy, right?! As well as the
symptoms highlighted above I also had very bad stomach cramps, sleepless
nights, time off work and Uni, had to cancel plans with friends and avoided
leaving the house when things were very bad. As you can see, Gastroparesis isn’t
just physical, it affects a person’s whole quality of life.
Coping
I went to my GP a number of times and told him about my symptoms, however
he dismissed them and suggested that I was suffering from stress. “I don’t feel
stressed” I told him, but as the years went by I grew tired of being told the
same thing over and over again until eventually I stopped telling anyone. I coped
quite well by using various strategies; over the counter medications to cure my
nausea and bloating, thinking of excuses which people would believe in order to
escape a night out… I was the master of disguising my symptoms until a few
years ago when the nausea became uncontrollable. I was admitted to hospital two years ago, again in DKA; I was unable to eat or drink a thing and I vomited for 4 days non-stop.
It was decided that I had food poisoning because I had eaten chicken the night
before, however when I said that it has happened on and off for years, nothing
was done. When I think back now I wonder if it was assumed by my HCPs that I
had slipped back into my old ways and was omitting my insulin again. I was told
that investigations were too expensive, but perhaps their thinking behind it
was that there wasn’t really a gastric issue, more that I was omitting. However
I wasn’t. Thinking back, this is one of those times when listening to the
patient and their family is so important.
After
that admission I started to speak to my HCPs again about my symptoms. I had
been “back on track” with my self-management for 2 years prior to that
admission and I was enthusiastic about my diabetes and confident in openly
discussing my problems. It took a further 2 years of discussions, symptoms and
more hospital admissions, but I've finally been given the test and treatment that I needed.
More
about that in my next unsexy instalment!
Ninjabetic x