hi I’ve been given a new diagnosis so I
wanted to come on here and talk to you
guys about
it basically as regular viewers will
know I’ve had problems with my digestive
system my entire life when I was a young
child my uh digestive symptoms got so
bad that my mom took me to the GP who
referred me to a specialist a children’s
specialist at my local hospital and they
did a bunch of tests and scans and such
and they couldn’t find out what was
going on and they ended up ultimately
diagnosing me with abdominal migraine um
which had never heard of before but
apparently that’s what they said it was
and because that’s what they said it was
we believed them and off I went and then
I had digestive system issues basically
just continually from that point um by
the time I was an adult I was being
unwell regularly I don’t want to go into
too much detail in case there are any
other am metaphores watching this video
um I was feeling nauseous whenever I ate
I was struggling really badly with
constipation I was having this
occasional really sharp severe stomach
pain where I would have to like stop and
breathe through it um but honestly I
went to the GP a few times with these
symptoms and they would just tell me oh
it’s just IBS don’t worry about it
there’s not really anything we can do so
I suppose the thing is is that when you
don’t have any reference of what your
body should feel like and because I had
always felt like this I just assume that
this was how Being Human felt I think I
also thought that I was getting a lot of
stomach bugs like I would be like oh
yeah I’ve got a sickness bug every time
it happened or that I was getting food
poisoning a lot but like a lot a lot and
then fast forward to my late 30s and I
was diagnosed with autism and then a few
years later with a connective tissue
disorder called EDS so EDS is as I’ve
said a connective tissue disorder which
is genetic and connective tissue is
everywhere in your body including your
digestive system so it’s very common for
people with that condition to have also
problems with their digestive system and
in addition it’s also very common for
autistic people to have problems with
their digestive system now with an
official diagnosis of this netive tissue
disorder I got taken a little bit more
seriously and referred to a
gastroenterologist and my
gastroenterologist is amazing I love him
with all of my heart because I been
under him now for coming up to 5 years
and he has taken me seriously and he
very early on in um me seeing him told
me that he was not going to discharge me
quickly he was going to be thorough and
find out what was going on with me so
yeah he did like a lot of tests over the
years he has done a lot of tests
colonoscopy endoscopy
MRI CT scans you
know you name it I’ve kind of had it and
we have now got three conclusive
diagnosises which explain the digestive
issues I have two of which I’ve had for
a while now and this new one that I was
given last week so let’s start with the
historical ones so the very first thing
he tested me for was slow
Transit constipation
because of the symptoms that I described
and what you do is you swallow a bunch
of radioactive markers and then a
certain number of days later I’m not
entirely sure how many maybe six maybe
seven days later they x-ray you and if
the markers have not
descended or in fact are still there
then that means that you’re diagnosed
with slow Transit constipation which
means that your bowel is not pushing
through stuff as fast as it should
they’re not entirely sure what causes
this um it might be a nerve thing thing
they’re really not sure but it is uh
something that I was diagnosed with very
early on and then I was put on a daily
laxative which has proven really useful
in part of the controlling of my
symptoms and I think also just to
finally get someone go there is
something that we can see on a test that
is going on that might be contributing
to these symptoms so quickly in the
process was really reassuring and
helpful and then I uh was diagnosed with
lact lose intolerance so what they do is
they give you a lactose drink and then
you sit in a little waiting area and
every 20 minutes or so you go and blow
into a machine and I think it’s to do
with if you’re not processing the
lactose properly then hydrogen builds up
and you can see that hydrogen on the
breath test and very quickly they were
able to say yes you have lactose
intolerance so I have been able to
change my diet as a result of that and
reduce massively the amount of lactose
that I eat I’m not hyper strict about
Dairy because actually a lot of people
don’t realize that a lot of dairy does
not have that much lactose in it so for
example certain cheeses due to the way
that they’re processed have most of the
lactose reduced and so you can eat them
but I don’t have milk yogurt ice cream
things that are definitely going to be
full of lactose I don’t have anymore and
that helped with my symptoms but I still
was having a lot of symptoms and
struggling and then I had a test that
was to do with the speed of my stomach
emptying
which is like a radioactive meal test so
this one some of the tests I’ve had are
like weird ass um this one you go in and
they give you in my case radioactive
scrambled egg and some water to drink
that also has radioactive stuff in it
you eat this meal and then you stay in
this room and there’s a big screen and
every 20 minutes you go and stand in
front of the screen like kind of flat up
against the screen and then you can see
your stomach and obviously you you can
see the food because it’s radioactive
and you can see how quickly it’s leaving
your stomach and you’re there for 6
hours after doing this every 20 minutes
so that they can time it and the results
of that test were that liquid was
leaving my stomach at the usual rate but
solids the food the scrambled egg was
not it was delayed but they said that
because the liquid had left it was most
likely to be caused by an obstru ction
of some kind in my bowel which led them
to suspect to be honest either Crohn’s
or
cancer so like the doctor was like we
need to do a capsule endoscopy which is
rather than sticking a tube down your
throat to look into your stomach they
give you the camera in a little capsule
that you swallow and then you wear like
this little pack have the data gets put
on the pack and you give the pack back
and they can look at at your whole bow
it’s all been recorded by this Groovy
Little camera I mean how cool is that
right so I do this test and the results
of that were that my bowel is like
normal fine no obstruction no sign of
Crohn’s no sign of Cancer yay so we’re
obviously very happy about that but that
was like N9 months ago and the plan was
to have a follow-up appointment with my
gastroenterologist to talk about the
results and what that meant moving
forwards so obviously because right now
the
NHS is under pressure my appointment
got massively delayed and I didn’t get
SE until last week and he said that
their suspicion after the gastric
empting stud study the scrambled egg
meal was this diagnosis but they had to
rule out cancer and Crohn’s first but
that basically what this meant was that
I was going to be diagnosed with
gastroparesis gastroparesis basically in
my very unscientific understanding of it
means that because of nerve issues my
stomach is kind of paralyzed if you like
in that it doesn’t push food or empty
itself as fast as it should and food
stays in my stomach for too long which
causes me to be nauseous and causes me
to be sick
it’s a bit of a shock I mean honestly
after 20 years of being dismissed by
doctors I really thought that I was just
making it up I really thought that I was
just like overthinking my digestive
issues I’ve been told that before now
overthinking my digestive issues or
focusing too much on the sensations are
all the things that people have told me
over the years because I’m female
presenting and because of medical bias
and because of whatever I have been
given a team now so I will see a
psychologist who will help support me
with the challenges of living with this
diagnosis I will see a dietitian who
will advise me on the dietary stuff and
I’ve also been given a medication that I
can take when needed to deal with the
nausea that I get as a result of my
gastroparesis it’s kind of upsetting to
think that this is something that won’t
ever be cured I’ll always have this it’s
kind of upsetting to think that as well
as autism
ADHD EDS I also have this
thing um but joking aside it is what it
is and I’m quite a positive person so
I’m going to take it on board I’m going
to use it to inform my um life moving
forwards and hopefully improve my
digestive symptoms even more so yeah
that’s it that’s me that’s my new
diagnosis I hope that you’ve found this
video interesting perhaps if you are
experiencing symptoms similar to mine
it’s something for you to investigate
and think about um I would always
recommend not getting your advice from
someone on the internet so if it has
made you go oh wait hang .
thankyou reading and I will
see you next time goodbye