well the prep was easy and even the taste wasn’t too bad although I know there are different types. Hunger sparked a migraine this morning which prompted vertigo but took meds as permitted. BP low on arrival but had sedation and gas and air as felt I didn’t need to suffer more than I had too and the Gastroscopy was very painful in my throat in April last year.
It was uncomfortable but retrospectively I can say breathing techniques would have sufficed. I was given tea and biscuits afterward and up ready for collection within 30 minutes despite BP being low.
Nothing abnormal discovered and no further action needed so ref back to GP to decide what or if there is a next step. Having a nap this afternoon and hope to get rid of dizziness from low BP and back to normal; well my normal at least.
Thanks for all your encouraging messages.
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Meant to say that some of my symptoms overlap with lupus and PMR hence my value of HU and all its coverage. The most obvious example is the malar rash that I get most evenings. AI conditions are very intriguing and intricate when you try to unravel them and once yours has a label they tend to stick with that and attribute everything to it as well.
Well done Stills for coping with your colonoscopy so well. They're tough when you have low bp like i do too. Its great news no nasties found but i'm sorry that your search goes on for help with your debillitating symptoms. My pre-op assessment has just been changed to next week now so 'cutie pic' is delayed till afterwards. I'd got transport organised and was mentally prepared and then the phone rings!!. Don't we dread it?.
I do hope you recover soon and enjoy Thailand when you go. Take care. Xx💐🤞
Morning Misty14, I’m sorry about your pre-op and I know what you mean. When my phone rang with a reminder message about the colonoscopy on Monday evening my first thought was - they can’t cancel it after I’ve done the purge surely! Hope you managed to reinstate your plans .
You are right that I still don’t have a diagnosis for this mixture of new symptoms and it’s over a year since I had the cancer flag blood test. My theory is something else caused that, an infection or Stills activity perhaps and whatever it was led to gastric issues, weight loss, headache, sore eyes, fatigue and nausea , increase in joint pain and new joint pain, thinning hair , dents in nails, dry skin, drumming sounds in head and ears, more migraine attacks with vertigo and so on and it’s just been a series of things over a long time making it all seem worse than it was. I don’t have another answer for it. At least the low BP was discovered and can’t fault the NHS treatment which has been prompt and good. My GP has been dreadful though with only one f2f appointment given in 12 months whilst Ive had 4 blood and fluid tests, a gastroscopy, ultrasound scan, hysteroscopy, ECG, Colonoscopy and night in AnE. I can’t help thinking a more hands on approach from GPs could avoid this misuse of NHS resources. That’s my rant over.
Hope next week goes ahead as planned, let us know and take care xxx 🌺
Afternoon stills, thank you for your lovely message. I hope your feeling stronger today . Its awful suffering and keep having normal tests. They found my cause with 1 final test!!. That could happen for you. I do agree with all you say, though, i think its very possible and infections don't show up very well for us and cause flares. Had you had your covid jab?. I've been very affected by mine this time and it can really exacerbate existing symptoms.
I have managed to alter my transport booking for next week and will have 🤞 i can go. No expectations this time as illness problems are rife. Thank you for your support and good wishes. Will update next week. Take care stills and i hope you feel better soon. Xx🤞💕🤞
Morning Stills. So pleased that there were no abnormalities found and that you tolerated the procedure well. Put your feet up, get a cosy throw and relax now the hard bit is done xxx
Have you heard from the consultant cecily about your results. My pre-op appt has been changed to next thursday so 'cutie pic' is delayed. Not surprising really with how the nhs is. Xx🤞💕🤞🙏🤞💕🤞🙏
Hi Misty, I saw the ENT Consultant last Thursday and she told me to take the lump out this week as it was nasty and very rare to be growing so quickly. I discussed the pain consultant saying I would ‘die on the table’ during surgery so requested that she operate under a local anaesthetic. She was not keen as they will have to break my nose and burn the mass out of my sinus but she said if that is the only way to do it safely they would sort it. I might possibly need a transfusion but both the Rheumatologist and the Vascular Surgeon felt that endoscopic surgery would be safer than going in through my mouth or the side of my nose.
I am sat here waiting for the call now and to be honest I just want it over with. I have my bag packed but of course the Junior Doctors are on strike here in Wales. I back them 100% of course but I will be relieved but scared when I get the call. I have spoken to my Social Worker and my care hours have been upped to nine hours a week so Neil will have some help while I am in and when I come home.
I hope your pre op goes ahead next week as planned lovely. It us unnerving having to wait isn’t it? Xxx
Thats awful cecily so i hope you get the call soon to get it over and done with. Its horrible waiting!. Your very brave having a local anaesthetic but i know you've not got a choice. The nhs is the best in the world for emergency care so you will be in great hands. Do hope it all goes well and i'm pleased your care hours are increasing too. That will help you both.
Thanks for your lovely wishes. Hopefully it will be done next week🤞as i can't have the ops till it is. Catch up soon and hopefully you'll be recovering. All the very best. Will keep 🤞for you. Xx🙏💕💐🤞🙏💕🍀💕🙏
I have just had a text pre assessment next Thursday too. My GP seems to think they will keep me in but hopefully when I get the kettle r it will explain xxx
I hope cecily we bring each other luck!. I'm having to go to a different hospital for mine. Hope you don't. My gp said to me once pre-op done its weeks not months for the op and my nurse friend said you get a date usually within a month as they don't want to waste the tests.!!. 🤞 for you. Xx💕🤞💕🙏💐💕🤞💕🙏💐🍀🪄
I hope so too. Sorry I meant to type letter not kettle 🙄. The pressure on my eye is causing blurring so sometimes I type gobbledegook.. Good luck lovely we are both at the end lap now I think. It will be wonderful when we both have at least one part of us fixed .My Rheumy said where do we start with the plan moving forward. I said I will get my nose fixed, then my genital area numbed, then one knee done, then the other knee done, then my bladder sorted and then you can start my immunosuppressants. He said fair play you have your sense of humour 🤣 xxx
Don't worry cecily about typos. We all do it and i realised it should be letter.The pressure must feel awful. You have so much to fix. I think your right re nose op and genital area treated but i think you need to prioritise the immunosuppressives before your knees. It will be a long time for those and your missing out on help for Behcet's symptoms. It will be wonderful to get one bit done. Specially as i'm having problems with pain relief. Went to pharmacy today and they can't get the 5mcg morphine patches, they're not making them anymore. I need to make 15mcg so will have to reduce to 10mcg as they're not a problem to get!!. Its another bit of stress we don't need as coping with our illnesses is enough. A bit of progress helps us cope too like the pre-op going ahead. 🤞for us both. I'll let you know how i get on. Will think of you lovely. Xx🤞💕🤞🍀💐🙏
Thank you so much. I will be thinking of you on Thursday and hoping that you will be given a date for your foot op. Please let me know how you got on lovely xxx
I've had my pre-op cecily today. I hope you've had yours and it went well. I did think of you. Tests were ok, just may have to see anaethetist about my drugs. The gallbladder op could be first and foot later. They're in a race would you believe to be 1st to give me a date. Really scary now but not long. Xx💕
Hi Misty that’s great news lovely. It sounds good for you getting both things done soon.
Well what a huge disappointment mine was. I went packed and ready only to be told that you don’t routinely see an anaesthetist unless there are problems?? I said they knew there were problems so the Consultant said I would see an anaesthetist . Anyway they were thorough at least. I had bloods,BP, ECG, chest exam. questionsire , swabs etc done and now the anaesthetist will review it. They want to do a General but that will not be decided until the day 🤯. To be honest I had had two hours sleep, was at the hospital from 8.15 - 12 and then Rosemary and I went to a bite to eat.I got hone around 3.30 and fell asleep until just half an hour ago. I am shattered . At least the said it will be very quick now. I have my info for admission, what to bring etc and it will be in the new hospital which I am pleased about because I will have my own private room if they cannot do the surgery by local anaesthetic . I got no response every time I said I am coughing constantly and choking on gunk and spitting out blood. How can they operate while I am coughing? I am still none the wiser and I have this awful feeling I will turn up for my op and they will send me away .Xxx
Oh cecily, thats awful when your suffering so much and need it ASAP. I did know from experience that they arrange for the anethetist appt separately if needed. It was for me last time and my drugs have increased!!. Glad your getting the hospital you want and room. Just want it over with now as you get geared up for it!. I had same tests as you and felt exhausted after appt but i was only out 1hr and 3/4 luckily. Now we're waiting for the phone to ring aren't we?. 🤞you will go first and it goes as well as it can. Thinking of you. TAKE CARE. Xx💐💕
Bless you thank you Misty. It just seemed so frustrating when the person I needed to see most was not there. Usually in Wales you get all the questionnaire filled in bloods, ECG, swabs, temperature, weight and height and BP then go through to see the anaesthetist. I was shocked there was not one there this time.
I have now done out in lots of mouth ulcers which bit am sure is brought on by stress.
I am going to forget everything this weekend and try to relax. I truly hope that you can too. Hopefully we will both hear sone good news early next week 🙏🏻 Lots of love xxx
They've decided to join the UK model of no anethetist just nurses, cecily. No wonder you were shocked!!. Let me know when you hear and i will too. I will do cutie pic tomorrow. I'm relaxed if i don't think about it as i'm sure you are too. 🤞, its not long wondering. Big hugs. Xx💐💕🤞💐💕
Ahh what a waste when someone is high risk. They know of my Professor Ivanova who is an anaesthetist specialising in pain management. They know she has said aI will die on the table if I undergo a general anaesthetic yet they send he to a nurse to assess me? Of course the anaesthetist will have to review me himself/herself. I am trying to relax but it isn’t easy is it? Mind you I was just ecstatic . The canine behaviourist suggested we get Finlay enrichment items so I bought him one of those dog puzzles. I cheered as he worked out how to flip, lift, move the little boxes to get the treat inside. I am a very proud dog Mam he got all 12 🎉❤️🐾🐾 Skye could not be bothered with it but then he is only six months old. He loved the squeeze cheese on his lick mat though. Have a lovely weekend Misty and I hope thst next week we both finally get some good news xxx
No, luckily stills and looks like gallbladder first. I hope so as feel very poorly today but feel relieved i'm in their care now, rather than just getting thru the days.I hope you feel better in yourself now. Cutie pic tomorrow. Xx🤞💕💐🤞🙏
Well that’s a relief! Although I’m very envious you were offered gas and air, I’m going to ask if they have any next time! I couldn’t have the sedation offered as I’m so allergic and I found it quite rough to the extent my BP dropped dangerously low. Hope you get to enjoy your holiday now 🤗
PS: I had to ask for the gas, it obviously has a cost so they don’t volunteer it and I also had to almost insist on the sedation as they kept on about needing care afterwards.
Well done, you did it! You are lucky to have been released so quickly, too. I'm glad nothing untoward was found. I hope that get your problems sorted now.
My April endoscopy was painful, in fact the only thing that didn’t hurt at all was the vaginal scope thing but I guess we’re used to that sort of discomfort after children, periods and smear tests. Are you a nurse or similar ?
I’m retired now but I was a nurse and then trained to be a Health Visitor so I haven’t worked in the acute sector for decades. Mind you I work part time from home now which is perfect for me. Full time work just threw me into one long continuous flare. Yeah endoscopy’s are horrible for most people without spray and sedation 😏
Hi honey bug, thank you for your reply. The April thing was an endoscopy so they’ve seen down, up and in with scopes and no cancer found. I’m beginning to think the blood test that showed Ca125 last Feb should be ignored now. Low BP and divertiticulitis is all that has been found. If it takes another 46 years to find anything to account for these new symptom's I will be pushing up daisies by then. I do think they have checked for Stills disease involvement first given it’s a life long condition for me but hey you can’t have everything x
hi hun…you made me giggle about the 46 years…hahaha😆😂🤣😆😂🤣
I was in my 20s when I started seeking answers but 45 years of no diagnosis. I’d given up then I decided 1 last ditch effort and the 46th time I finally got diagnosed with a very rare condition and DNA x2 confirmed it and in writing to prove to all those who accused me of faking/being crazy etc.
Fibro fog blocks my recall…apologies…sorry about your low bp that’s hard especially when you’re too tired to function My hubby had diverticula decades ago and he was really suffering from it. The patients I cared for in my former life that had diverticulitis were very sick. I always felt so badly for them.
Best wishes on finding the answers you seek. Sometimes they’re very long in coming to us.
Please take care sweetie. I just said a prayer for you.
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