Looking for positive stories

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Following the very positive reception of the publication of the Down with Acid book by the medical profession, I have been asked if I will compile a booklet or series of leaflets of patients' experiences of oesophageal procedures that can be given to patients about to undergo them who are, understandably, anxious.

If you have had any upper GI procedure - eg. endoscopy, barium swallow, gastric emptying, dilation, pH manometry, Bravo, ablation therapy, fundoplication, oesophagectomy etc. recently and are willing to share your experience and give permission for it to be edited and used (anonymously) in a leaflet to allay fears of other patents, please contact me via PM or email to chairman @ BarrettsWessex org uk

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  • Posted

    I had a endoscopy done as well as the dialation ..it was a peace of cake ..I worried all for nothing. Took 3 min for the procedure ..when people say it takes long it's because you have to fill papers first and then they put the needle in your arm if you chosen to be put on anesthesia. After you lay down for 30min in recovery and after that you go home.
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  • Posted

    Hi, I have had four Gastroscopy's over the years. My latest was for swallowing problems, continued sore throat. (I have mild SLE and possible Fibromyalgia' still under investigation) my first two experiences were not great but the last two I had sedation which was great as I knew nothing about the actual procedure. Everything was explained in detail by the doctor who held my hand when talking to me and that helped me relax. The male nurse that looked after me from the start had not done a cannula before and asked if I was willing under supervision, I agreed, he was more nervous than me, he did very well but did forget to put the gauze underneath for when a small amount of blood does release which is normal and it bleed on my arm as they had to do it on the inside of my elbow, no good on my hands. He was extremely grateful and as I always say under supervision these nurses have to learn somewhere and sometime and on someone as the practice ones used are not life like enough. Moving on before I had the procedure I had a throat spray which taste something like Banana bit was bitter but only for a minute and it was all over in a flash, didn't even remember going back to the cubicle. offered a Cuppa which I had to let go cold to drink but water may be preferred in future for patients with this procedure as it is more soothing. Cannula taken out and waited for my lift to go home. You do feel a little wooziness after when walking but as long as you are not working the same day you will be fine. Have someone at home to be with you overnight. Don't be too worried about the time it takes for results as mine took two weeks.

    Good  luck with your leaflet, I am sure there are better experiences than mine but this was an opportunity for me to write it down (although casually) written.

    take care Barretts.

    regards,

    Nicola.

     

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  • Posted

    I got pretty worried about the last few weeks as to me an upper GI endoscopy was the equivalent of replaying the facehugger scene from Alien. Really, REALLY hated the idea of anything going down the throat, and I read too many forum posts like that old discussion about people thrashing around under sedation... I delayed it needlessly for a week and a half, but eventually the specialist insisted so I went and got it done, at a hospital in Singapore. I know it's not in the UK, but I got a lot out of these positive stories so adding mine here for other worried, tube-phobic patients to reassure themselves. 

    The registration process took a few minutes. It's the usual hospital form where you list allergies, but they also measure your weight, height, blood pressure and a few other things. Then I changed into a gown (only upper body - they let me keep my shorts, socks, etc.) and went to lie down on the bed. 

    The doctor was a bit late so I got a chance to read the wall, which had 4 posters listing the 4 different types of sedation. "Light" sedation means just an axiolitic to help the patient be calmer, but he remains fully conscious. "Medium" slows him down a bit, but he can apparently still see what's going on. I got (presumably) "deep" which means sleep, but retaining control over your breathing. The last level is "general anaesthesia" where you lose the breathing and do not react to even the most intense level of pain. 

    I asked the nurse what they were going to use for sedation and she mentioned propofol. This is the right moment to discuss the whole "thrashing around" thing that appeared in an older thread. A small number of people react to benzodiazepines, including midazolam (see https://en.wikipedia.org/wiki/Midazolam#Side_effects) by increased activity instead of sleep, this is known as a paradoxical reaction. This was the final nail in my worry since the thrashing about talked about was 1. not caused by the tube going down the throat, but by the drug (and on a minor number of people too) and 2. caused by another drug which they're not using on me. 

    The doctor finally arrived carrying a syringe, and immediately asked me to lie on my left side, then open my mouth. He sprayed the lidocaine, which tasted alright actually, bitter banana but the kind of bitterness in a negroni rather than something that would make you want to throw up. I immediately sensed it was getting harder to swallow, but didn't have time to reflect on it because he was already injecting the propofol in my IV which was kept over from the MRI with contrast. The room went blurry in seconds, which is the last thing I remember before waking up very happy and rested in a bed, kind of like being drunk without the feeling of sickness or blurriness. As I sobered up, no side effects, no nausea, no tiredness, nothing. 

    All in all, a relatively "pleasant" experience, as far as going to the hospital can be. Definitely a lot better than when I had to get some stitches done under local anaesthetic and could see and smell everything. 

    Luckily there was nothing long term in my upper GI, but better safe than sorry, hopefully this write up will help those in doubt get that endoscopy faster.

    I should also mention that IVs are now made of plastic so I could walk around for an hour between the MRI and the endoscopy, bend my arm, etc. with no ill effects. That was quite nice, can't imagine how anybody would be able to put on a polo shirt or a hospital gown without bending the arm. The IV was the worst "pain" of the whole thing, and it's really nothing to worry about, a mosquito hurts more.

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  • Posted

    Don't know if this counts as an upper GI "procedure" but I'll describe the MRI as well since I had no idea what that would be like. 

    I think the machine they used was a 1.5T Samsung one. The nurse asked me to change - completely, except underwear - into a gown, after leaving any metallic objects behind. I then headed into the room, which was bloody cold - I'm guessing to help cool the superconducting magnet. They asked me to lie on the bed, which is relatively comfortable if a bit hard, then put a coil on me (it was an abdominal MRI) which looked like a grid of 10cm x 10cm squares of thick plastic that covers the whole chest, and then a thick blanket for which I was grateful at this point as my hands were turning blue. 

    The first scan is done without contrast, so no injection yet. I asked for earplugs which was necessary I think as the noise is pretty loud. They put them on for me and then put headphones on. You get a little air "pear" that you can squeeze if you have issues to speak to the nurse, that's placed in your right hand. Then they belt you up, I suspect to keep the coil in place, it's a velcro strap around the chest but not super tight (you can probably get out of it if necessary). 

    Then began the interminable series of test. Officially, it takes 15 minutes but you never know when it's going to be over since you can't see a clock. The tube is not so bad honestly, if you move your head a bit you can see the openings on either end. You're asked to hold your breath around 15 seconds for many scans. When you hold your breath, you can hear the noise of each scan, coinciding with a warming feeling in a small section of your abdomen - I immediately thought of reheating chicken in a microwave. It's not "hot", just a mild warm sensation like you get after drinking warmish hot chocolate. In movies, they have the sound be clonking noises but most of it is actually closer to alarms, either a long fire alarm or short bursts of a medium pitch alarm, a whining sound. That's why it's quite jarring, and why the headphones are a good idea. 

    Well, the 15 minutes really took their time even if staying still was easy. I think if you come in knowing it will feel really long you can prepare mentally for it, when they say "15 minutes" you think "oh, this will be over quickly" (ironically, the opposite was true for endoscopy, I thought it'd be interminable but thanks to sedation it was over in a flash). 

    They wheeled me back out of the thing, undid the strap, the nurse came over and inserted the IV. I was bloody cold again but she got it easily and it didn't feel like much. I thought that was the injection but then they brought two syringes the size of cyclist water bottles and hooked that up. I was told to be very still and follow instructions attentively as the contrast scans cannot be redone on the same day, which would mean another round some other day (at $1,700 a round! I hope you Brits enjoy your NHS). "Just 5 minutes". 

    Well, the 5 minutes took just as long to pass as the 15 minutes previously. But since you're lying down it's easy to close your eyes and just wait it out. Contrast scans feel the same as not contrast scans, except for the part where you're a bit anxious not to screw it up so as not to go through the whole thing again. I felt nothing even as the contrast was being injected and had no reaction. The only feeling was the poking of the IV initially, but I rapidly forgot about it - like a mosquito bite.

    Then they asked me if I wanted to keep the IV, I said yes, cos I'm going upstairs for the endoscopy, so I got out of the fridge, changed back, went upstairs and go the endoscopy.

    All in all an alright experience, but I'm not saying anything new here. I wish they had given me the pictures on a USB stick so I could enjoy looking at my organs in 3D and sharing them with my family, but alas it's all printed out on that negative paper they use for the ultrasound as well, which is quite hard to read and copy.

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    • Posted

      Thanks. I'll use the story if I may.

      MRI isn't a procedure I've had. - was offered it once but I get claustraphobic and didn't like the idea of putting my head in the washing machine.

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    • Posted

      Sure, go ahead, I'd love for it to help reassure other patients as this forum has helped me.

      In my case, I paid $1,700 (hopefully insurance will pay) to know that the tumour in my liver was probably benign. That was worth the inconvenience and I'd have stayed in there five hours if necessary. Also got a check up on the other organs, particularly the pancreas which has some of the most vicious cancers and it was a nice-to-have to know that this was also clear.

      I'm a little claustrophobic, but it's not as bad as I thought. It's open on both ends and bigger than it looks, you can focus your eyes comfortably on the top of the tube, and since it's white, the room is well lit, and your head is close to the other side (which you can see a little bit at the edge of your field of vision) you don't really feel "trapped". I'd say the velcro belt is probably going to be more of a problem to someone who is claustrophobic even if it's not tight, but the possibility of dying, and the need for an answer, has a way to focus the mind and ignore the discomfort!

      I also think the Samsung machine was relatively older and they have both open machines, and much shorter tubes now, in both cases this should alleviate the claustrophobia. 

      My upper GI write up is longer but awaiting moderation due to my linking to a Wikipedia article on one of the sedative drugs that used to be used. You're welcome to use that one as well if you wish, that's the one I wish I had seen before going in.

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