Endoscopy no.2

Before I start this post I must make mention of the terror attack in Manchester last night.  I literally welled up when I turned the telly on this morning at the thought of the grieving families who have lost their precious children, and the survivors who will have to live with horrendous blast injuries for the rest of their lives not to mention the psychological trauma.  I have no idea what the terrorists hope to achieve.  It’s not like the entire United Kingdom is suddenly going to go “OK, we’ll all become radical Muslims” now is it?  And let’s not forget that Manchester is a multi-cultural city with a large Muslim population and the concert was filled with brown children as well as white.  There is no faith which supports taking a life and even if there were it wouldn’t advocate taking the lives of others with the same faith.   The world’s literally gone mad.


So, yesterday was torture endoscopy day.   I wasn’t allowed anything to eat past 8am and eventually went 11 hours without food.  I was only allowed water until 12 noon, so went without a drink for 5 hours.  This is not good for someone who drinks like a fish just to stay upright and eats every 3 hours or she feels like she’s going to pass out, and driving 60 miles in that state probably wasn’t all that safe!

I went on my own to the Hospital as these days I have no-one to go with me.  It’s fine and I’m used to it.  My Dad did offer, but it’s more stressful trying to keep my eye on his wanderings and keep him entertained than it is to go alone, plus I don’t trust his driving despite the fact he recently re-passed his test.

Three days before, I’d had a phone call from a nurse who went over all my health questions with me on the phone.  Despite this, on arrival at the endoscopy suite I was taken into a room and asked all the same questions – why, exactly, and what a bloody waste of NHS money.  Having arrived at the hospital I had been told by the nurse on the phone to report to Reception, but they didn’t even take my name and just told me to go and sit in the Endoscopy centre – the system is a shambles.  I then sat in the waiting room for the next 1½ hours for reasons I couldn’t work out.

I was told I was having the procedure done by Debbie, the endoscopy nurse, but was eventually called in by a youngish man, who told me he was the endoscopy doctor – why they’d swapped me I have no clue.  He was vile.  Truly.  He took me to the tiniest room on the planet, then said
“so, you have Ehlers-Danlos!  Can you do party tricks?”
I was taken aback and stuttered “erm, well I used to be able to but am too old now”.
“You’re not old!” he exclaims.
Me, starting to get irritated “as you age you stiffen up, and anyway doing party tricks damages your joints so isn’t recommended.”
Him: “Have you had children?”
What the fuck has that go to do with anything? “No.”
Him: “Oh, cos I was wondering if they just popped out like shelling peas” he grinned.
Fuck off you dumb ass.  You’re making light of a disease which causes me untold daily pain and has wrecked my life.
Him: “Can I ask you a question?  What’s your life been like?”
I’m totally flummoxed by this and reply “in what way?”
Him: “Well, how has it affected you?”
I know from his attitude he doesn’t give a fuck how my life has been affected and I have no idea why he’s asking.  I just want to have my endoscopy because I’m terrified I’m going to have anaphylaxis and die.  So I reply “I developed M.E. after having meningitis, was bedridden for a decade and nearly died, so although having EDS is shit at least I can function which in my world is brilliant.”
Him: “What do you mean M.E.?”
Me: “I also have M.E.”
Him: “What does M.E. stand for?”
Me: “Myalgic encephalomyelitis”
Him: “Just checking you knew.”
Me in my head: “fuck off you weird twat.  As if I wouldn’t know the name of the disease which nearly killed me and has decimated my life for over 2 decades.
Him:  “You also have mast cell activation disorder.”
Me:  “I do.”
Him: “Is that confirmed or just probable?”
Me: “It’s mostly only ever ‘probable’ in the UK because we don’t have access to the tests we have in the States to confirm diagnosis.”
Him, laughing: “we have in the States?”
Me: getting pissed now.  “We don’t have access to the tests they have in the States.”  I’m anxious, exhausted, ill, dehydrated and haven’t eaten for hours.
Him: “Rights, let’s go.”  Then, as we’re heading up the corridor to have the procedure “you do know this can cause perforation and infection don’t you?”
Me: “Thanks for that, it’s not like I wasn’t already nervous”
Him: “Well I have to tell you these things”
Me: “Not 30 seconds before you do it you don’t.”

In contrast, the two nurses were absolutely lovely.  Before we got started, though, I asked the doctor if he could do some biopsies to be tested for mast cells as I think they might be causing my issues.  To cut a long, shitty conversation short, in which I’m made to feel like a hypocrondriac who has made her disease up, he says no.  In fact, the entire procedure took less than 3 minutes – he went in, had a look around, and came out again.  No biopsies of any description, not even of my pre-existing 11 polyps which haven’t been checked for cancer for 5 years.  What a waste of time.

For anyone who hasn’t had an endoscopy before I have to say this: it’s one of the worst things I’ve ever had done, and I’ve had a shit load of stuff done over the years.  I’m allergic to sedation, so can’t have it.  Instead they spray your throat with local anaesthetic, which makes it burn and then makes your entire oesophagus numb and feel swollen like when you have lidocaine at the dentist.  Swallowing is really weird and you feel like your throat is paralysed.  They lay you down on your left side and put a bite guard-type thing in your mouth with a hole in for the endoscope, which is a flexible plastic pipe with a light on the end.  It feels about a foot wide but is probably only about half a centimetre.  The lovely nurse rubbed my back and held my hand as the camera was inserted, but trust me when I say they have to be brutal to get it past your voice box area and you gag like your life depends on it, literally feeling like you’re choking, and your instinct is to try and pull it back out and to stop you doing that is the real reason why the nurse holds your hand 😉  It does feel like you can’t breathe with the tube in your oesophagus but of course you can – you really have to focus though, battling against panic, and breathe deeply in and out through your nose.  There’s another brutal shove, with gagging, choking and coughing as they get it through your diaphragm and into your stomach where you can feel it moving around.  It’s not painful but very very weird and uncomfortable.  Another brutal push and more gagging as it goes into your duodenum, where again you can feel it moving around.  And the whole time you feel like you can’t breathe and are choking to death.  Lovely.

My first endoscopy took about 20 minutes as they took pictures and loads of biopsy samples, but as I said earlier this time he was in and out within minutes.  Lots more gagging, coughing and choking as the scope comes out and it’s all over.  Thank God.

Apparently all is fine.  I have a tiny hiatus hernia not even worth mentioning and no inflammation.  How I can’t have inflammation is beyond me, being as though I have acid burning my oesophagus every day of my life and have had for several years now, but according to Speedy Gonzales everything was “plum normal”.  I fucking hated him.

Knowing my throat swelled last time I was fully expecting to be kept an eye on for at least half an hour, maybe longer, afterwards but no such luck.  I got up off the bed and was out the endoscopy suite literally 30 seconds after he took the scope out.  I did ask “what happens if my throat swells like last time?” as I was being escorted out the door and he just said “see a doctor”.  Thanks for that when my local cottage hospital doesn’t even have doctors on staff out of hours.

Luckily there was no significant swelling this time – it was such a relief.  I did spend the night feeling like I had the worst case of tonsillitis ever, swallowing past razor blades, and my throat is still really sore this morning but I managed to eat some soft food (mashed potato and carrots with salmon) for tea.

The Doctor did say that being as though all appeared ‘normal’ he wants me to go back for an ultrasound on my gallbladder so I’m now waiting for an appointment about that.  I then have to see the Gastroenterologist, who usually sees patients before all this stuff is done but wanted me to have the tests first so he had the results, which I can understand but if I’d seen him first he could have ordered the mast cell biopsies *sigh*.

I’m fairly sure I know what my pain is all about, but as usual Doctors don’t listen to me and aren’t willing to do the necessary investigations.  If it’s not something typical, like a hernia or an ulcer, they’re flummoxed and not interested in investigating further.  If the Gastroenterologist fobs me off I’m going to ask if it’s possible to be referred to an EDS specialist, ie Qasim Aziz down in London – I’ll probably be told no but it’s worth a try.

I’m tired, bruised and disillusioned this morning but at least it’s over with and I survived unscathed 🙂  My advice for anyone else having an endoscopy would be this: if you can, have the sedation.  You apparently can still feel the procedure but it’s not half as traumatic as having it done fully conscious!

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14 thoughts on “Endoscopy no.2

  1. Sarah

    I agree with your common, that dr sounds like a real twat! That did make me laugh.

    Can I ask what pain you are getting? If they don’t find gallstones, look up a condition called sphincter of oddi dysfunction of SOD for short! It can be triggered by morphine and coedine. It feels like gallstone pain. Ive found My stomach pains are set off by plain water. I can only drink tea until mid afternoon and then I can only drink squash or some fruit juices. I’m sure mines a histamine release problem as I can’t remember why I did it, but I took some liquid piriton and it eased the pain up, but not all the time and I end up in A&E. I’ve also found buscopan helps, so when I feel it coming on I take both. I hope that helps

    I’ve had sedation and that didn’t work for me and the spray closed my throat up so I couldn’t have it done. Also I can’t swallow weirdly when I’m lying down so that didn’t help. I was made to feel like I’d wasted their time as this was the 2nd attempt. I have GERD and a hiatus hernia so I need to have it done especially with my history of cancer. I’d rather not thank you. I did have it done in the past, but I don’t know why it changed.

    Im sorry to hear of your experience at the hospital, I long for a diagnosis as I thought it would make going to the hospital easier than having to explain things like don’t put a wrist band on me as I come out in hives with most types of plastic. maybe he was so excited to meet a patient with very rare disorders that his brain didn’t engage with his mouth or he was just being a dick

    PS please tell me if I ramble on in my replies and I’m annoying the hell out of you. I know I probably come across as offloading my shit but it’s so nice that someone out there gets it. It can make you feel so isolated and you don’t want to talk about this with friends and family as you’re worried that they are getting fed up with you, but when you’re housebound there’s not a lot to talk about. Also I don’t want a pitty party, with the head tilt, “oh poor you”, I want someone to listen and then hit me around the face with a wet kipper and told to get on with it. My teenage son is excellent at that!! You strike me as the sort of person that has a kipper in hand 🙂 Anyhoo, I hope you have a great day, Sarah x

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    1. Jak Post author

      Yes, I’m definitely more a hit round the face with a kipper kind’ve girl Sarah lol! I’m going to do a blog post this week about my gastro pain which should answer your questions. Jak x

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  2. Livvy Woodburn

    Awe my goodness Jak! Horrific! I’m so sorry you were forced to endure this abusive doctor! I have had just the same type of disgusting behaviour from an opthomologist, after waiting for 3hrs in the waiting room, in my tilt in space wheelchair barely conciouse as not used to even that level of upright, we waited to long my husband had to go and move the van so typically I was called in when he wasn’t there, I had eds charity eye info documents with me but he apparently knew all about eds anyway and proceeded to want to know who diagnosed me, with his first ever question to me being, ‘why are you in a wheelchair?’ Subsequent meetings with him have been with him trying to ‘catch me out’ asking how I got into the wheelchair from the car!!! What on earth gives them the right to treat us so appallingly??!! I wish I could remember all the convo like you have written down because it was truely shocking and his care of my eye sight has been much the same.. oh it’s makes you so angry! Then I felt so defenceless at the time being so weak and barely able to converse as you explained so well re your getting to hozzie on your own and not being able to manage pots as normal that day, it’s a miracle we even get there and keep fighting through this ignorance! I don’t understand why if they don’t get something at least just be a kind?! Sending hugs sorry you had to meet this unfortunate human who has been blessed with a cold hard heart! We don’t have that! 😋

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    1. Jak Post author

      So sorry you’ve experienced arsehole doctors too Livvy. As you say, kindness is all we ask and it’s not too much to ask from someone who is supposed to be helping us :-/ I sometimes wonder why these people become doctors at all, as they obviously don’t care about their patients and seem to just be going through the motions. He really was an arrogant, sarcastic, weirdo who was wildly inappropriate at times. Jak x

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  3. Elaine Stammers

    Hello Sarah. I have been reading your blog for a while – I think I may have posted once before. I found your blog because I also have a diagnosis of ME/CFS plus I was exploring histamine intolerance as the possible source of some of my symptoms, and then read up about MCAS and wondered about that too. I do not have EDS as far as I am aware, but clearly do have some issues with collagen, and milder hypermobility. I also have hypothyroidism.

    I agree with you about having a sedative for an endoscopy if at all possible. I have now had 3 done, and all 3 with sedation, but with the last one I had to be grilled by a hostile nurse beforehand who tried to talk me out of sedation for 5 minutes, suggesting that if I did have it then I would not have throat spray and could choke with the tube going down. I said, OK I will definitely have both then, and thankfully got them, but only after a fight which I could have done without, having like you had a long wait in a waiting room. Also what a contrast with the colonoscopy experience late last year where they fell over themselves to be supportive!

    Anyway, I too have mysterious burning pain in the oesophagal area with no visible inflammation. My Gastro said I have Functional/Non Ulcer Dyspepsia, which I have never heard of but according to the net is incredibly common. In my case I could take Omeprazole and that would ease it, but don’t want to as I am diagnosed with Osteoporosis already and it will make that worse. There is some very interesting research done already online on Functional Dyspepsia and I did wonder if it was a case of mast cell activity which was where I got into the MCAS issues. For myself I have managed to mostly relieve the pain but only after drastic changes to my diet. I have even read in the past few weeks that people with FD/NUD have issues with fat and fructose in particular. I also have IBS so have a very limited diet now, also taking out nearly all processed foods, sugar and gluten, but we are all different of course with these things. The fat issue is also relevant of course with the hiatal hernia and gallstone, both of which I also have, but I am not sure it’s the same thing for me as I seem OK with some fat (eg butter) but not with others (eg fat from cooked chicken). I can barely eat fruit at all now though…..

    Anyway, apologies if your own problem is entirely different, but just thought I would mention this in case it is similar. There is a chap in Australia who has done quite a bit of research on FD, but over here no one is interested and you are just left to cope alone.

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    1. Jak Post author

      Thanks for the info Elaine – I’m really sorry you’re suffering with awful pain too 😦

      Mast cell disease can cause joint hypermobility and collagen issues. I’ve heard of people online who started on meds for their MCAD and it drastically helped their hypermobility issues, so that’s still worth persuing if you’re still having issues. Gallbladder problems and MCAD are thought to be linked too in some cases – my Mum, I’m certain, has EDS and MCAD too and had her gallbladder removed at my age. It was so shrivelled and diseased they couldn’t even find it on the scan. She was the 1 in 20 who didn’t have gallstones though, just disease of unknown cause, which I think now was MCAD related. Jak x

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  4. RDA

    Hi JAK, I’ve been reading your blog for the last couple months. I’m in the US and have been diagnosed with endometriosis and MCAD. Taking fistfuls of MCAD meds since November 2016 has changed some of my symptoms significantly for the better. I’m currently trying to schedule a surgery date with an excision specialist here for the endo. I’m 46, and don’t have much life to speak of. No kids, no partner, no career. I earned a grad degree in 2012, but never got to apply it successfully as my health worsened and I began ‘working full-time’ to figure out what’s been wrong forever that just got a lot worse in 2014. I’ve got some autoimmune stuff going on, but I kind of see that as all of a piece with the endo and MCAD. A successful surgery for the endo would, I hope, lessen the over all inflammation burden and then maybe I could get on top of my chronic infections…. but I blather and digress.
    I wanted to write because it was difficult to read your experience of endoscopy without clenching my jaw while hearing about the painful procedure. I’m so sorry you had to endure that incredibly crap experience. Also, I am interested to learn the mailing address of the so-called doctor you had that little chat with, so that I can mail him a box of Organic American dog feces.
    I did finally feel motivated enough to write today because I wanted to share this medical journal article about the pharmacology of MCAD. If you already have it, please forgive me. I don’t mean to be one of your commenters who’s insisting that you try this or that because I have it all figured out (which I most certainly do not), but I thought it worth a shot because 1) I have had bizarre and wrong experiences with anesthetics myself before I knew I had MCAD. Also, before I knew I had MCAD, I had an upper endoscopy & colonoscopy successfully with propofol (which is mentioned in one of the tables in the article as a possible substitute for other drugs that can be quite bad for MCAD folks). I was absolutely unaware of the procedure, but I did feel it took two days afterward to get back to my normal shitty baseline. 2) I am approaching actual surgery (which I’ve never had before) for the endo and was glad to find this article which I plan to give many copies of to anybody involved with my surgery (i.e., particularly the anesthesiologist & nurses).
    Again, please forgive me if you’re already aware of this article.
    Please let me know if you can’t get it from this link and still want it. There is a downloadable PDF of it, which I can also share.
    https://link.springer.com/article/10.1007/s00210-016-1247-1
    Kind regards and positive vibes sent across the Atlantic to you,
    RDA

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    1. Jak Post author

      Thanks for the info RDA. I did put together a large info pack when I was contemplating a hysterectomy last year, but can’t remember if what was in it now!

      So sorry you also have endo – the pain is indescribable to anyone who doesn’t have it. I wish so much I’d been able to have a hysterectomy – I really think it would have helped me. But sadly we all decided it would be too risky due to my all encompassing drug allergies (I’m allergic to the drugs which are supposed to be ‘safe’ for MCAD people).

      Your offer of sending the arsehole doctor some poop in the post made me LOL!

      Jak x

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  5. Jennifer

    Well I must say it is so frustrating and sad to hear what you went through.
    Studies show swearing helps us tolerate more so good thing we can swear on the inside.
    I could only cry after reading your blog and the other posts. I am glad I can cry or I’d be so angry. I can’t imagine going through that without sedation.
    So sorry. Words escape me. Jen from California

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  6. Laetitia Lalila

    That attack was revolting. My thoughts and compassion go out for the victims, their families and the British people… what a sad, sad day!

    Speaking of revolting, that doctor wasn’t by any means better. I admire your patience, Jak. I would have lost it after his first question. What?! How rude!!! Why whyyyy whyyyyy do people like this exist?? What a waste of time and suffering this has been!

    I am so sorry this has happened. I know you are a strong woman an everything, and went through a LOT, but I just wish you didn’t have to… sending you all my love and support XOXO

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  7. d

    Ugh what a jerk! There should be an emotional IQ test that is a requirement for anyone who is going to be in a helping profession. This guy clearly had an agenda, which plainly illustrated his complete ignorance of several diseases and their long term impact on a person. I have felt the “you so crazy” vibes too and it just makes a person want to scream “LISTEN TO ME!”, read a journal or five about the subject you clearly know nothing about and stop being so arrogant.

    I am glad that you did not have a lot of swelling after the fact. The whole procedure sounds really horrible : ( Glad it’s over and if you have to have another one some time in the future, I very much hope you will have a much nicer medical experience.

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  8. Letitia Halvorsen

    I am angry,, No one should have to go through all that in order to have an endoscopy. I admire your tolerance. Leading up to it was absolutely cruel. As I said in my first blog to you, I am 90 years of age and have had more than my share of ill health, caused I suspect from the toxic environment I lived in from birth to my twenties. Also wartime, right? Only through diligence and pursuing every medical condition of my own and also family members, as well as history of ancestors, I pieced together some very interesting theories, No one interested.., for instance how come I survived diphtheria at 15 months old, during 1928 when Britain lost so many children in the worst /diphtheria epidemic (no antibiotics in those days). I recall struggling at primary school in a queue of kids, years later, lined up for the first break through in the disease by mandatory injection. It wasn’t the needle – it was the fact that at that young age, I felt I should be immune, having had the disease! My protests meant nothing – hold your arm out!! You see what I mean?
    I have never really trusted the medical profession since. You have to be always one step ahead. There are so many interesting issues I can relate to from you and your bloggers! Just mention one – and I bet I have some knowledge of it! Moving to Sydney in the late 70’s in one respect, probably brought out the worst also as well, menopausal stuff.. I found an Orthomolecular doctor who I am sure helped me no end. First, a skin biopsy for Lupus. Result – borderline. I had suffered with ME, multiple allergies to everything – food, environment, and particularly pharmaceutical drugs. First things first, he wanted a medical history of my family etc. My mother suffered from pernicious anaemia , I had inherited the same condition and B12 injections saved me.. Asthma eczema also addressed, Diet and vitamin supplements followed, from 1979 and still going……. I have had my share of colonoscopies and endoscopies and yet – never have I had to endure the conditions you went through recently. I blame the National Health! We have a similar system here, Medicare, but I doubt if one would encounter what you went through. I had never to wait to be done! Went through all the rotten disgusting purging stuff to drink but that was the worst part. I recall the doctor asking me what music I preferred as I was given the injection – nothing more until I woke up in a side ward .with a lovely nurse offering a gluten free sandwich and tea. ………seen by the same doctor in his rooms later and shown a video of the journey through the intestines and removal of two small polyps Advised to look into the FODMAP diet.
    The medical services you are experiencing are crap, Not good enough Jak.
    By the way, my remedy for GERDs is – put one acidophilus capsule (pulled apart in the mouth)to allow the powder to line the mouth and throat until it dissolves.. followed by a sip of water.
    It works!! stops the burning and pain. Which goes to show how important acidophilus is.
    Despite all the health problems we all encounter, there is great humour to be found in your blogs. It helps so much. Keep it up.

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