Awaiting gallbladder removal.

Have you had tests to show gallstones or a hida scan to show it’s not functioning? I got to that stage pretty quick where I was in constant pain, permanent nausea and was off work with it as physically couldn’t work in that amount of pain. Had mines out 5 months ago now and things haven’t been amazing but I do feel better than I did beforehand. I definitely think it’s a risk worth taking to remove the gallbladder! Yeah there may be side effects but you know you can’t go on the way you are feeling just now. So any improvement I guess would be a bonus? We’re all here to help 😘 xx

Hi Katie. I feel for you. Did you have an ultrasound taken to determine if it's gallbladder?? I was told I,have 2 large stones and told to go on a low fat diet. Doing that, but lost weight. I am a thin person to begin with. I saw a surgeon and he said surgery wasn't needed. After last attack, I decided to have surgery. When i received the paperwork, it scared me. Now I have decided to go for another ultrasound and put off surgery. Don't rush into surgery unless all steps are taken first. I wish you good luck.

Hi

Thanks for your prompt replies. Comforting to know I'm not the only one awake in the middle of the night! I've had several scans on my gb. I have a 7mm ployp in it which is why it's being removed. My consultant has been monitoring it's growth but has always said he doesn't think it's the cause of pain. I've asked about hida scan but was told there is a strict criteria as to who can have one. I very much doubt I will get one if I'm not on the waiting list for removal. I've been waiting since November.

Katie

you poor lady , bless you.

i had the same journey as you for over 3 years Katie but my pain attacks were very significant as in going anywhere let alone to work was not an option,I also lost 4 and half stone due to being too scared to eat, I really do feel yr pain.

yours is a bit different though in as much as they don’t seem to be able to find any stones ,which is an added worry as in you really don’t know what’s wrong, and yes that’s extremely scary to live with.

have you had an MRCP which is an mri scan ?

if not please go and keep driving yr gp crazy until they give you that scan , as it looks at the boilers tree 🌲 

PRESS FOR THAT TEST IF YOUVE NOT HAD IT KATIE !

ALSO ,theirs another test Katie , Called an ERCP , where they do an endoscopy.

which can determine wheather you have spinkter of oddly disfuntion or not , so ask your consultant, why you’ve been given that test , and request it , as you need answers and fast.

you do I beleave still however , need yr gallbladder removed because of the polyip ,as at 7mm you are nearing the risk of gallbladder cancer in the future not now so do not panic , at 10 mm it becomes a real risk ok.

you need more tests you need answers and it’s yr right to have these tests performed so drive them sick f****** at the 

n.    No

h.    Hope

s.    Service 

‘mad until you get them, as if you do not push they will not test Katie. If they save a pound at the cost of yr life they have a heaved their goal as you ,we don’t matter anymore !! Saving a pound does be leave me I know it dear.

what your going through is very painful and very scary , possibly very dangerous, you don’t know , as you do not have enough answers ,

‘and yes it will destroy you totally Katie. Mentally, physically, and emotionally, 100 per cent for sure as it did me !!

they left me , the same as you Katie , for 3 years and no one and I mean no one gave a hoot if I lived ,died or went crazy !!

in fact !! They tried very hard to convince me I was crazy and damn near succeeded!!

and trying to get me on anti depressants and telling me I had cancer phobia etc the sick b******* that I have now come to learn that they all are.

katie they literally left me for dead 💀 literally in the end and all they had to offer me was morphine of which I repeatedly refused point blank !!

i ended up in as good as emergency private surgery with hours to live my surgeon said !!

ide had a 2.2 cm stone stuck lodged in the cystic duct , gallbladder neck , for 3 years , so 90 percent of bile could not enter nor leave my gallbladder, it then as it turns out became infected , then gangrenous and full of puss , I was extremely ill and in enough pain to kill any man beleave me !!

and the nhs answer to this at various a and e departments !!

would you like some morphine !!!

my own gp even refused to give me a private referral for a ct scan , when I produced my own private evidence of what my condition was , when I was insisting I be sent to hospital and put on intravenous antibiotics and fluids with Nill by mouth to reduce the inflammation in my gallbladder and bring the infected gallbladder under control AS THIS WAS NICE GUIDLINES FOR MY CONDITION !!

REFUSED BY MY GP AND VARIOUS A AND E DEPARTMENTS ????

and this is when I had my own private evidence of my condition by this stage Katie !!!

now then I did start to think I was crazy !!

if it weren’t for my better half ,pushing me and telling me ,no no hun yr not mad ,your condition is real ,don’t listen to them, ide be dead now 100 per cent for sure !!!

i got my private ct scan at Harley st I was told as I left with my cd disk to find a surgeon now this instant !

ide had a consortation with one in Harley st 3 months prior, I dropped the disk to his secretary , left , was driving back home to Windsor in agony, when he called me and said , I’m doing a liver transplant as we speak,  you need to get yourself to the prices grace hospital immediately, as you have only hours to live ?

i do not know how you are driving or alive to be honest , your gallbladder has ruptured ?

and I believe it’s gangrene, please get to me so I can save yr life ?

i drove to that hospital, he put his liver transplant on ice as I arrived!!

it was 6:30pm I went under immediately woke at 7:50pm to be told completely gangrene, ruptured,

ect ect I’ll spare you the gory bits .

and my god you are one very very strong man and so lucy to be alive !!

i went home at 11am the following morning , I never took a single pain killer before or after the opp !

im 5 months post opp now and I’m doing just dandy !!

my new job is suing the n h s death squad and I will not give up until they are held accountable for attempted manslaughter and trying to releave my 5 year old son of his dad to save a pound !!

i also will never pay tax again in this country nor National insurance out of princeapal and ide rather die or go to prison than pay it ever again !!!

thats my story Katie or the best part of it !!!

please do not sit on yr hands !!!!!!

‘please do not sit on yr hands over this .

you must be proactive and find your cause !!

ive only wrote all this above as you say you are finally broken ok

no you are not !!

you are a strong woman , you have people family who love need you depend on you !!

you are UNBREAKABLE KATIE !!

you get up you go fight for your right Katie , your right to your nhs healthcare . And you go save your own life .

i don’t want to read another story about another person died at the hands of our murderous nhs as it seems over this condition because it’s a hard one for them to diagnose sometimes which I know it is !!

you get up you go fight you can and you will get diagnosed and the treatment you need and deserve.

please do not give up that’s just too easy Katie !!

if you need any help with the nhs me and my mrs will help you and we will if you want our help please let us know ok ??

YOU CAN DO THIS YOU CAN GET THROUGH THIS AND YOU WILL !!

What kind of work do you do.? If you have your gallbladder removed you will not be able to life anything heavy for a while so that may determine when you can go back to work. You should not have to pretend you are OK.

As far as diet is concerned stay off anything fatty, it is extremely difficult to stick to a completely no fat diet but as little fat as possible.

Take care and keep in touch

Sarah

Hi Katie, you're not alone by any means. I was the same as you and they mentioned to me also that I might have sphincter of oddi dysfunction. In the meantime they found that my gallbladder wasn't working properly so I had that removed first to see what pain is left if any. Unfortunately after surgery the pain as you described started again. A month after surgery I had an appointment with the surgeon and as I was still starting to get this pain all the time he said he would refer me back to the gastro clinic but to also he suggested to me to go through my gp and get them to refer me to the pain clinic.

The pain as you know gets worse and as I'm right handed any movements aggravate the pain and it gets so much worse. As I wasn't to have a gastro appointment for several months I decided to pay for a private appointment which I'm so glad I did. He examined me and said he didn't think my symptoms were due to sphincter of oddi dysfunction but to another condition call abdominal wall nerve entrapment, its all related to basically the muscles that form the 6 pack in your abdo. Because the nerves turn a 90degree angle for some reason they get trapped. He did what is called a Carnett's sign which was negative at this point as there are various areas from under the ribs to the lower abdo where the pain originates from. I can go straight to it now. He also suggested the pain clinic and to show the doctor there the letter he was to write.

I had the pain clinic appointment about 8 weeks after my doctor referred me, he did the carnett's sign test on me again and he knew exactly where to press as it was excruciating in the places that were tender. Doctors often miss this diagnosis and there's not loads on the internet about it.

My doctor did a nerve block procedure a month later which decreased the pain by about half which was a great relief, unfortunately they don't know how long it will last so I'm waiting now for my appointment next week to have this procedure again and hopefully it'll last longer. 

I had to have my gallbladder out first as I couldn't eat much without being sick and at least now I can eat normally again but I have this constant pain that is always worse in the evenings and if I've been quite active.

Yes I know what its like to be sat up in the middle of the night in pain because its keeping you awake. Have your gallbladder removal first and then see what pain comes back afterwards, it may not. There is a treatment for this but it is trial and error but sphincter of oddi dysfunction is awful and you really don't want that. Not all doctors think of this first but its worth keeping it in mind after your surgery if you're still suffering.

Keep in touch and let me know how everything goes.