Anyone help?

[Violet74]

Varices banded during endoscope last week. Was really scared abput getting the endoscope I have a horrible throat phobia. Opted for sedation did tell them I didnt react well to some sedatives. They just dont work on me. As it went they didnt felt wide awake and alert. Coped OK then they said they had decided to band varices. Not to me but to each other. From then on it was awful. Took ages. Was retching it was so painful. Copious amounts of saliva felt as if I was in a nightmare. Also heard them say I woul have to get another other one After they had finished they tried to get bloods I was like a pin cushion so dehydrated. The whole experience has traumatised me to the point I am thinking I cant do this anymore, constantly crying. Pain at the top of my stomach. Headaches and throat very sore. I have seen a consultant once and spoke once to her on the phone last March. Thats it. Been OK having another health issue causes me more pain but is deemed trivial . I'm not one to moan but the last week has not only scared the living daylights out of me but I cant sleep in case they send me another letter. So depressed in tears writing this. 😢😑 Dont know what to do. Know about varices through reading things on here so I don't want to die if they burst but I have had it with my consultant and the whole lot if it.

[Richard-Allen]

I totally agree with you Violet, this is a very unpleasant procedure, but believe me, you really don't want to go through the alternative of throwing up buckets of blood, and thinking your about your life is about to end. You'd be in hospital for about three to four days, hooked up to machines and drips etc.

Your throat will be sore for a short while, and the banding may feel tight and painful for a bit. Things will begin to ease off soon. The worst is over, so try not to worry too much now.

Good Luck

Richard.

[Violet74 in reply to Richard-Allen]

I know, it's just the fact no-one has really explained anything to me and with the sedation not working I was totally traumatised. Just feel really down at the thought of more like that ☹️

[Richard-Allen in reply to Violet74]

You are so right. Sadly some hospitals are better than others and some staff are more patient aware than others. At the end of the day it's a case of basic courtesy.

When I had my liver transplant carried out at the Queen Elizabeth Hospital Birmingham back in 2016. One of the nice touches before they knock you out and put you under was that all the staff introduced themselves and explained what their job was, and what they would be doing during the procedure. This then put your mind at rest and if made you feel confident in the team, they also gave you the chance to ask any question.

It's just a shame that others can't follow this example.

[AyrshireK]

Sorry to hear you had the yucky experience you were anticipating.

Can I ask, were you relaxed or totally up to high doh i.e. extremely agitated before you went in? You absolutely need to be as calm and relaxed as possible in order for sedation to take effect because otherwise you are actually fighting the sedation.

As discussed previously, my hubby was told he has the most sensitive throat in Scotland and absolutely dreaded his endoscopies which at one time were every 5-6 weeks and he a total of 42 variceal bandings.

His consultant always tries to give him the first appointment of the day so he isn't waiting long into the day getting ever more anxious, he holds his breath when they do the throat spray so avoids triggering his gag reflex and then as soon as bite block goes between his teeth he shuts his eyes and tries to go to sleep (often succeeding with the help of the sedation). He says he has been aware of the nurses saying "Just another couple of minutes, keep calm!" but hasn't been aware of the full procedure as you have.

Did you make them aware afterwards that you had endured every minute, aware of what was going on?

It sadly does sound like you will need to return (the banding tool can only carry 6 bands at a time so without having to take the scope out and go back in again they can only do 6 bands per session). I would certainly make them aware 'in advance' of your fears, the fact sedation didn't work for you and ask about an early in the day appointment so you arn't growing in anxiety all the day of your appointment. Put it in writing to your consultant. Hubby is fortunate in that it is his consultant who actually carries out his endoscopies. She is brilliant, amount of sedation varies each time for him. We did write at one point about getting a general anaesthetic for the procedure but it was explained to us thoroughly why this isn't really a common option.

As regards your pains just now, make sure you are maintaining a soft diet until the pain starts to ease. It's incredibly sore when anything passes the banding site but it will ease. Hubby was allowed to take paracetemol if it was too intolerably sore (just a couple a day - not the full dosage).

Pity they didn't take your bloods before the procedure, we've had the same bother with hubby at local hospital when it took 5 goes to insert the canula for the sedation & still managed to miss the vein so much so he felt the sedation like a burning sensation under his skin and he managed to get them to stop and resite the canula. Needless to say he doesn't go for endoscopies locally anymore - his consultant at Edinburgh does them and there the nurses will only have one go at a blood test, canula siting and if they can't get it they pass it to someone else so they arn't sending you home black and blue.

Wishing you the best of luck, any more support you need on the endoscopy issue give us a shout and i'll see if I can get any more hints or tips for you.

Katie

[Hidden]

Hi Violet,

Can you possibly think about asking to speak with your consultant and discuss the gastroscopy and banding with them and your concerns? They will be used to advising patients who feel worried and may be able to offer alternative ways to relax you if you need a repeat procedure.

If you would like to have a chat and are in the UK the nurse helpline is open Mon to Fri on 0800 652 7330 10am to 3pm.

[JanetH67]

I woke up in the middle of emergency banding which I had to go through, intubation and all, because I was lucky enough that my husband found me before I completely bled out.

It was absolutely the scariest sh*t I’ve ever experienced as I woke up and could hear them talking, could feel the banding apparatus snapping bands in place, could feel them removing and reinserting the banding machine. I started to cry once I realized I was the only one that knew I was awake, as I was under a paralyzing drug (along with the sedative) so I’m awake completely, but can’t move at all, even to blink to let the Drs know I’m awake!!

In my mind I’m freaking out completely, losing it, but the only one that knows I’m awake is me. What can you do but calm your mind and tell yourself it’s going to be ok. Luckily, I survived. 🙌🏻

Tell your Drs you want to be “out” during routine endoscopies, since you have that choice. Waking up in the middle of the normal bandings is bad enough, waking up hearing Drs trying to save your life - OMG! Traumatizing, but hey, the alternative is much worse! I’ve had to get about 20 endoscopies since, and my Dr knows to make sure I am down & out! Make sure yours knows your needs, we don’t need to live in any more fear than we already do!

Best to you.

[1379]

Hi A similar thing happened to me I felt really traumatised afterwards and when they said I had to return and have it done again in six weeks. I thought there’s no way I’m experiencing that again. I could not stop crying I felt so devastated and depressed I spent most of the following three weeks in bed.

I had nightmares about the procedure, I rang my G.P and told him how I felt he told me to ring the consultant well that didn’t work I. Could not get passed the secretary who told me someone would write to me after about three weeks I had a letter explaining it was normal to feel like this never heard anything else until I went back to see the nurse practitioner who said next time I would be given more sedation and pain relief it’s been twelve months since I had the banding done my procedure has been cancelled because of covid I returned to see the consultant In March had bloods done and there’s a problem with platelets that has to be sorted first before I have it done again. I don’t think people can appreciate how horrible this procedure is unless you have experienced it as most of us have. Try and speak to your consultant and see if something can be done to make sure this doesn’t happen again.

Take care

[Violet74 in reply to 1379]

Exactly how I feel also same with the platelets. Bloody terrified I feel brutalised not going through that again unless they guarantee better sedation. Feel very depressed at the moment decided to go off sick from work. Could cry 😢 thanks for makung me feel less alone friend x

[1379 in reply to Violet74]

I have just been told I have low platelets and now been referred to see a haematologist what next!!!!!! I’m terrified what’s causing that Really upset yet again .

[AyrshireK in reply to 1379]

Low platelets (Thrombocytopenia) in cirrhosis with portal hypertension is pretty par for the course. You've probably got an enlarged spleen and this is gobbling up all your platelets and less are getting made. You may find you have difficulty stopping minor bleeds, have gum and nose bleeds or bruise more easily.

My hubby had a really low platelet count (20) at one point before a biopsy and had to have a platelet transfusion before hand.

Just another complication of cirrhosis sadly.

Katie

[1379 in reply to AyrshireK]

Thank you for the information that makes me feel better, well a bit. I am imagining all kinds. Take care

Lorraine

[Violet74 in reply to AyrshireK]

Glad you are so knowledgable it doesnt half help

[Violet74 in reply to 1379]

Same here so have I waiting on word x

[Liverandlife]

When I had my 1st endoscopy I was only offered a throat spray which was totally ineffective. I subsequently had an endoscopic procedure at a different hospital where they offered sedation. When I commented that the 1st hospital had not offered this the consultant said that it was "medieval"! You have all my sympathy.