LUPUS UK
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Gastroscopy Under General Anaesthetic

Hey all.

So here's a update from Tuesday 5th Sept Gastroscopy.

The procedure went well, I loved being under General Anaesthetic!! I knew nothing about anything & when I came round in my room

I asked the nurse If I could take some propofol home as it's brilliant !!! Ha!

The Gastroenterologist Found some *inflammation* in my oesophagus. & took a few Biopsies & one punch Biopsy from my stomach lining. Testing for H. pylori & cell culture. Other than that it was normal.

I have a follow up appointment on the 28 September to discuss what the next step is. - possible Colonoscopy

He has mentioned Crohn's disease as I was once ANCA positive, which was once thought to be Vasculitis but it can also have those antibodies in IBD too! So confusing.

I had a lovely time at the winfield hospital. Treated beautifully & went home to sleep & still recovering.

My resting heart rate rocketed to 140bpm. I wasn't allowed home until it had stabilised. They assumed it was abnormal but as it's been a somewhat regular problem for me they said it needs to be investigated properly with a cardiologist. So that's next on the list.

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That sounds like a good result all round - and isn't it good to have that extra evidence for a cardiology review? I'm also pleased to hear that a gastroscopy under GA is feasible - it's near the top of my list of "things I don't want to have done to me ever again"! Thanks. x

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Hey Whisperit,

It's great news that there isn't anything sinister. I've had these symptoms for years, but the eating is still very difficult. I was weighed & I've lost 2 stone, More than what I first thought. So I have to introduce food slowly. It hurts to eat. But yes I would definitely recommend General Anaesthetic, plus it helps for pain during & after. I feel the discomfort today so it's taken a few days to wear off.

Are you due to have the procedure or thinking of having it ? X

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It's something that has been suggested, but more as an optional extra rather than there being a clear indication for it. Luckily my gut is having a very good spell atm (touch wood) - it's misery when it is playing up, so I do hope you get yours settled soon x

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Glad you went on ok I tried the can I take some home it didn't work ether 😂

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Ianrussell69 I have to stay this ! What frigging amazing stuff though!! I was told afterwards I wasn't speaking in English😆 & I had a pounding headache & asked for some painkillers which they agreed too. Apparently instead of dissolving them in water like I normally do I just put them straight into my mouth! 😁 wish someone would of filmed that because I'd be laughing at myself too for years to come.

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Hi Laura, I sent a reply last night but it doesn't seem to be on here so forgive me if you receive two!. Just wanted to say how glad I was to hear you had a much better experience this time. Only sad that you had to pay for it. Thankfully nothing sinister was found. Be good to hear the results of the biopsies when hopefully they will determine your gastric problem. Bet your relieved it's all over. Take care x

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Hey Ludo, don't worry it's lovely to get messages from you.:) Double is better than none.

Yes me too, I was very happy when I was wheeled into theatre. The anaesthesiologist remembered me.. he said " wow Laura it's been 6 years since I've seen you" I was half asleep due to being up all night prior with reflux. I said " mr twigg? & with that he said " spot on" I did your laparoscopy for Endometriosis removal. Your in good hands. Then all I remember is the nurse stroking my head & i was gone.

I'm happy yes that's it's over it's been a anxious few weeks running up to it. But I'm glad it went well. Waiting on results now which will take 2 in half weeks. 🤞🏻 xx

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Hi Laura

Glad your gastroscopy went well and they've found some inflammation that can be treated!. It's good there's a reason for your symptoms, sounds ridiculous I know but we end up feeling like this don't we?. Good luck for the biopsy results and colonoscopy. I think you'll want a ga for that if they'll do it as not a nice test!. You'll need sedation certainly. I hope you haven't got IBD , it's quite rare with lupus. I have the other condition UC , luckily mildly but it's an extra we can do without!. These illnesses do keep us busy, sorry you have to see a cardiologist but your certainly getting lots sorted out which you need and hopefully will feel better soon. Keep us posted how you get on and take care. X

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Hey misty,

Thank you Hun, I was only saying that to my parents yesterday, when things come up normal I worry that others will assume I'm not as poorly as I make out. But yes can relate to what you said a lot.

I had a sigmoidoscopy several years ago but never a colonoscopy.

Jeez 👌 sedation doesn't work for me, it's not strong enough & it seemed to have the reverse effect & made me wide awake & more aware of my surroundings.

So a strong Request of GA is a must 😊.

I've been reading about UC sounds so bad. & painful so I feel for you 🌹

I hope I haven't got crohn's but after reading it, & speaking about it to the consultant prior to procedure he said my GP diagnosed IBS back in 2007 but never did any tests to see if it could of been the start of IBD. It's like I would have a "flare that would last a few months" & then settle. But how I managed I'll never know.

So now it's been mentioned & I've got to grips of some of the information I can now try & filter what's happening next. It's a lot to take in.. & yes another thing to worry about, but I feel like I'm getting somewhere slowly but surely. Thanks misty 🌷I will keep you posted xx

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So pleased to read your post and hear that your GA and procedure went so well. What a relief for you. Let us know those results. How long will they take?

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Hey Wendy,

How are you? Thanks me too🌼

Around 2 weeks I've been told. X

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That's long enough to wait. I hope it goes by quickly for you. Have a good day today. Rest up. x

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Thanks Wendy, it's always nice to hear kind words from genuine soul's such as yourself🌸

It's a long wait, but with it being private I have faith the results will be delivered promptly unlike my GP/hospital. I've already had a follow up appointment sent through the post for 28th sept. I need to rest I feel exhausted in my entire being I'm very Emotional, I don't feel depressed I just feel..... sad. I keep crying, ever since waking up from the anaesthetic I've been an emotional wreck.., its weird. As I don't normally cry so much. I can't explain it. 😢

Not sure if that's happened to anyone else but it's another thing to deal with I suppose x

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Unfortunately there is always something and I find sometimes it's impossible to find the exact cause, as with lupus and the related stuff it's nearly impossible to separate it all out. x

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It's a lot to filter I guess as well. Plus going through it is a heavy cross to bare. I'm just hoping & praying I can find a balance because it's been such a hard time directed on towards my health that an even keel is what I desire. I think without experiencing a break from illness it sort of gets to you as it's all you've known. I look forward to some sort of "remission period"

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I'm a bit late here, but I'm glad to hear your gastroscopy went well. It's now that I'll mention my first gastroscopy, with sedation ( which I swear I didn't get). They took over 15 tries to get the eight biopsies they wanted. I was told I wouldn't feel anything. Wrong! The lack of sedation made me able to count everyone. To be fair, I had ulcers in my oesophagus.

Next time (after healing) I insisted on the gascoscopy being done at a different hospital, and opted for the throat numbing. That was a lot easier.

I've known a lot of people half-sleep through the procedure with sedation, so who knows?

The results of the biopsies came back fast. I can't remember how fast, but I was quite surprised to get my GP on the phone so soon.

I do hope they can get you help and you are able to get some weight back soon.

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Hey Lupiknits,

Don't worry. Better late than never 🌸

Gosh 😯☝🏻😢

I didn't get that far but proud of you for doing so.. did you not have a IV? Omg I can imagine & visualise the horror!!!!

The throat spray made me gag so much 😫 & sedation was administered afterwards which I think was wrong! I asked for a higher dose as I've had one bad previous experience with a low dose and they couldn't proceed. I was told 2nd time round in b'ham I was aggressive & tried to pull out the tube 6 times. They had to hold me down by my wrists & forehead. Surely that's not right....!

I woke up in recovery with one shoe off one on, red rashes all over my arms & face, I had little ulcers in my mouth. Just felt extremely upset & obv disappointed that they had to abandon the procedure due to my safety & staff.

But if it was done in a relaxed slow paced environment without the need to literally plonk me on the table, and turn me on my side I was literally having a full blown panic attack and couldn't breath! My blood pressure was 144 prior I had no one monitor my levels during the procedure. It was horrible !!

So your case is sooo much worse !! It must of hurt having the Biopsies done awake😡😨

Bless u. 🙏🏼

I'm relieved to hear you had some results that indicated the amount of suffering you must of endured.

How did they treat it ?

Definitely worth the money for GA. I pleaded with my GP but she booked me in NHS for end of November and that was just consultation it would of been another 2 month wait to have the Gastroscopy under GA so maybe march 18.

I couldn't of waited that long..

I'm glad you didn't find the throat spray as bad. I struggled with the whole thing.

Thanks for messaging though it's nice to hear other people's experiences of sedation etc I'm sort of glad I'm not the only one who didn't react well. But at the same time I feel so much empathy for what you went through Xx

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Thanks Laura. Well, they do sort of hold you down in position a bit! The first time I had the gastroscopy it was all soft words, then the last thing the nurse said was "Whatever you do, don't fight" so I was then instantly stressed. I didn't fight but those rotters could see me wince at every biopsy snip.

The healing happened gradually and I still take 2 omeprazole twice a day to keep the acid reflux at bay. We've tried lowering the dose to no effect. I've learned which foods, for me, set off the reflux. I was very resistant to the idea that coffee was bad, but, for me, it is.

My foolishness at ignoring the symptoms so long means my oesophagus is narrowed, hence experiences of difficulty in getting food down and episodes of it simply getting stuck. Alas, I'm left with the inability to tolerate anything acidic or even slightly spicy because that just hurts to swallow and burns all the way down. I love curries but they are definitely off the menu ☹️

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I did fight.. 👎🏻I'm a very placid & timid in nature so to hear that I was (volatile) was shocking. But I suppose having a long tube shoved down my throat & not being able to understand the doctors accent was distressing. But it's over & I took the get out of jail free card by going under GA.

May I ask, did you feel poorly a few days after ? Feels like I have a upset stomach been feeling really sick since yesterday & was up all night With a fever, my collarbone was really sore when I woke up from the procedure too. & still is painful if I touch it.

I know they pump air or something inside but I just feel so poorly.

I'm still getting the burn after I eat a small meal. It's sort of like spasms, but quite strong. & my tummy becomes distended & hard, looks like I've swallowed a boulder. I'm aware due to not eating my stomach as shrunken, but I had some mash potato finally some veg mashed into it so it was easy to eat but the pain not long after was horrible. Have you had anything like that ?

The Gastroscopy goes oesophageal- stomach - duodenum. I'm aware that the colonoscopy goes into the large bowel ? 🙈🙊clueless. I'm just wondering if it's the last bit of digestion that I'm struggling with.

Questions I guess for the gastroenterologist x

Coffee is my love too, but I had a small one this morning & it didn't go down to well & I ended up rushing to the toilet 🚽 I've had a few accidents in regards to Number 2's. & im not sure why. Prior to the procedure I was struggling with dark tarry oily stools, but yesterday was a nightmare, I couldn't leave the house I needed to be close to the loo.

Sorry it's a lot of information..⛑

I'm having pieces of watermelon during the day. Helps with dehydration. & im looking at some shakes until solids stop burning my insides out. It's a battle isn't it x

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I felt a bit sore afterwards, but not as bad a it sounds for you. I'm pretty sure you do have to be on your side for them to do this procedure, and as you are bony, something/one might have pressed a little hard ( doesn't take much).

I'm no expert, but just try very small amounts of soft stuff to start with. Mash is good (I add extra butter) with gravy to make it even softer. Sometimes veg, even overcooked and chopped small can be too much if my tum feels that way. Milk, if you can take it, is always recommended! Generally, on a bad day I find something like plain yoghurt slides down. Always remember that you've been able to eat so little you have to get going again very slowly.

The bloating and bowel problems may be related to starting to eat a little again, but it's always best to check with a doctor because all I can give you is my personal experience.

Pass the watermelon! x

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Hi Laura, lucky you that you have had it done with good results. On previous endoscopies I had some pretty good sedation, but now my oxygen levels are so low that I can only have VERY little. Had one done july 31st , found internal bleeding which makes my iron and hemo very low, so now I am going to start V.I. iron infusions. Then another endoscopy in October, not looking forward to it, but it doesn't take too long, 10 minutes max??

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