Gallstones please help!

Digestive health
1

Hi everyone.

I have been diagnosed with gallstones. Started having attacks after i had my daughter 4 months ago. It started off only being triggered by melted cheese. I have a massive history of gallstones in my family so i knew what it was straight away. Anyway, i went to my GP and told them about it, had a referal for an ultrasound. A few days later the pain was unbearable- called an ambulance and went to a&e. Had some pain relief and got sent home with promise of a letter for a surgery date to have the damn thing removed. The next day yet again i was in absolute agony. Ended up back in a&e where i was admitted for 4 days with obstructive jaundice and abnormal lfts. They said a stone had gotten stuck in my common bile duct. But with fluids i managed to pass it without them intervening.

So anyways ive been back and forth from a&e for the last few weeks. And its now gotten to the point where i am in pain every single day :'( ive been given codiene paracetamol and strong ibpro. Im absolutely miserable the pain is awful i have two kids at home and its so hard to do anything with them because im all consumed with the pain i am in.

So my question is how long did you all wait for your gallbladder removal surgerys? Was there any pain relief you found that worked well? Theyve told me they have rushed my surgery with an urgent notice but im still waiting to here.

Ps sorry for the long winded message im just so miserable and hoping im not the only one whos life has been controlled by this and maybe they can give me some advice!

2

Diagnosed in June, admitted to hospital for a week in July. Then was having severe attacks every few days. Pain really didn't ease in the 5-6 weeks then admitted again last week. Got my gallbladder out on Tuesday. I honestly don't think the surgeons know how painful the attacks are and how much they prevent you doing stuff. Hope you get a date soon! Xx

3

Thank you so much for replying!

Its honestly driving me insane! Its good to hear that you werent waiting an incredibly long time! Im keeping my fingers and toes crossed that my op date will be within at least like 4 weeks any more then that and i might actually cry! The surgeon told me that i should receive my op date letter within the next ten days! If i havent heard anything within this time i will be continuously calling them until they do it!

Hows the after surgery pain? Im a little worried about that. But mostly i cannot wait to have the damn thing out so i can get my life back! Xxx

4

Call them first thing Monday morning and see if they can put a rush on it. Good luck!

I hope they get you in quick.

5

You definitely aren't alone Heather! There so many patients waiting, that is why there is delay. They even operate at weekends at my local hospital to try and reduce the waiting list.

Had my first major attack July 2016, but was misdiagnosed as having kidney stones. After two months of minor attacks, had another bad attack and was almost admitted. Gallstones were confirmed on ultrasound scan in September and I was told I'd need surgery and they'd write to me. A week later, the beginning of October 2016, I collapsed at home and was admitted with jaundice and cholecystitis. Spent a week in hospital during which I had ERCP and MRI. Told I'd have surgery that week but was discharged ?? No explanation given. In fact their communication was very poor. Seven weeks later I had another ERCP. Heard absolutely nothing from hospital after that. Attended A&E after another bad attack one week before Christmas 2016 and found I was not even on waiting list! Signed up for any HB surgeon and said I could come in at short notice. I was pretty desperate by then as my attacks were sometimes lasting 3-4 days during which I couldn't eat or sleep and I was exhausted.

End of January 2017 I got call asking me to attend for pre op assessment next day with a view to having laparoscopic surgery the following week but ended up having open surgery 4th February. 

I consider myself lucky to have had surgery so quickly as many wait much longer. As things turned out, the labs discovered I had gallbladder cancer and I had a liver resection on 10th March, so having gallbladder removed after four months probably saved my life. Had I been diagnosed properly in July 2016, I'd have had surgery in November as there's supposed to be an 18 week maximum referral to treatment wait.

My advice is to attend A&E every time you have a bad attack or else they aren't aware of how bad you are or how frequently you're having attacks and they can give you liquid morphine in A&E. I just curled up in a ball and gritted my teeth during attacks but I realise now that that was the wrong thing to do. Make them aware you have young children who are suffering as a result of you having to wait.

You don't get any sympathy from the doctors. Their attitude is that gallstones are self imposed by lifestyle, however there are other reasons why people get gallstones, genetics being one reason.

Meantime adopt a low fat diet, avoid baked goods, processed foods, alcohol and large heavy meals.

I hope you hear soon as I know how bad the pains get. 

6

Goodness me. I feel for you! Glad they caught it in time for you!

Well to be honest that exactly what my surgeon told me to do. Just keep coming back to a&e everytime the pain isnt controlled with coidene! Plus i have jaundice so if that gets worse i have to go a&e then too sad

My issue woth going to a&e is that my son has a LOT of medical issues himself. Hes recently had a double lung transplant, so finding a sitter for him is such hard work as only me and my partner know how to do his meds! Which means my patner has to leave work when i need to go to the hospital. Hes self employed so doesnt get paid at all if hes not at work. So weve lost so much money because of this stupid issue with my gallbladder :'( ive told the hospital about all of this yet they dont seem to care to much. i just need it out already! Keeping my fingers and toes crossed that it will be sooner rather than later. I cant go on like this much longer. Thank yoy for your advice!

7

Honestly I was at the gp every few days in agony. Was taking tramadol, paracetamol and ibuprofen and anti sickness tablets too. Was glad to be admitted as definitely needed the oramorph for pain relief! 

Didn't get out of hospital the day of surgery as took a while to get pain under control post-op. Not gonna lie, since I've been home I've struggled at times. Tonight I've been really sore and that's after making sure I'm taking pain relief every 4-6 hours. Been hugging a pillow lol. Thinking if I can manage through the next few days then it will start to ease! Honestly couldn't have lived in the constant pain and feeling as sick as that for much longer.

If you get admitted to be reviewed by a surgeon then should get surgery within a few days. Or at least I did anyway. Fingers crossed for you and know you're not facing this alone xx

8

If you went to your doctor when attacks started, you must already have waited four months? Surely it can't be much longer before they give you a date for surgery? You could try ringing the hospital to try and hurry things or write/email your local Patient and Liaison Service and explain your situation. If your son is also very ill, you deserve some sort of help from them. Mention the 18 week waiting time as they get fined when they go over it.

Once you've had surgery, you will need help at home. Is there a relative or close friend who might stay with you? You can't even fill a kettle as you're not supposed to lift anything more than 3lbs in weight (my handbag weighs more!). I know I had open surgery, so recovery is longer, but I couldn't iron, vacuum or even push a trolley around the supermarket. After six months, I still find lifting uncomfortable. All I could manage was a bit of dusting. You will need plenty of rest even with a laparoscopy. 

Take care of yourself.

9

my gb removal xmas 2016, its now nearly september my upper stomach is still sore,but sure im on mend,i was rushed into hospital as in agony for 3 days, no painkillers was hoping the pain would go it didnt ,i couldnt hardly walk,,,thankfully operated on next day, sent home the following day, sore but a hundred times better, after your op, take it easy when home,no lifting/ awkward movements,  all the best, 

10

I know how you feel heather040195. Ive had no life for a few months now and I'm physically and mentally drained, I cant go to work and I feel to ill to want to do anything. I seen doctors and out of hours and A and E but they just pass me back like a piece of paper to the next x I am under a consultant but people I know have waited 6/7 months some 1 year and a Half, they told me I had about 5000 other problems but they couldn't find anything, I think they just try to postpone everything cause its easier, I had a lot done in a month but it took ages for the results to come back. Uts a waiting game, its hard cause its taking away Time, that time your suffering which shouldn't be happening x soon as your under a consultant noone cares because you are the consultants problem noone else's x noone understands how bad gallstones are, what symptoms and pain they actually cause. I had to cancel my holiday due to this, I understand how you feel but chin up, dont give up i know its easier said than done. Hope you sort it all soon 😊

11

The waiting was very hard. Like you, I was exhausted by the time I got offered surgery. Sometimes my attacks lasted three or four days at a time and I couldn't sleep or eat during them.

You don't have to have this surgeon. You are allowed to choose (other surgeons may have shorter lists)  and I chose to accept any HB surgeon and also said I could be available at short notice. Some places you even go into a private hospital for NHS treatment. My first bad attack was July 2016, but I was misdiagnosed, so not referred until September and I eventually got a cancellation in February 2017, so I was having painful attacks for 8 months. I'd felt generally unwell since Christmas 2015: tired, night sweats and loss of appetite.

What I found hardest was the complete lack of information. After a week in hospital with jaundice in October I was discharged, even though they'd said I'd have surgery that week. I wasn't given any explanation. The member of the surgical team walked in and told me and another lady we were being discharged. He spent about 30 seconds with us and was in a tearing hurry. All I got told was I'd have to come in for a further ERCP in six weeks. 

At the ERCP in November, they asked me when my surgery was. I'd heard nothing. Nobody could tell me when I might hear. Never even saw my surgeon until I was three days post op, then only briefly.

I was referred by my GP again in December after another painful attack, having heard nothing since ERCP and told I wasn't even on a waiting list at that point!  How can you go from 'surgery this week' to 'not on waiting list' in the space of 2 months? Just thought I'd been unlucky and had somehow got missed, but since heard so many similar stories. It is a national disgrace. The whole system needs overhauling. 

With gallbladder, the sooner it gets dealt with, the less the risk of complications. I ended up having to have open surgery because stones had migrated into my common bile duct, then I had to have a liver resection because I'm apparently one of the 1% of patients who develop gallbladder cancer. 

You have to be proactive because they're not and you just have to keep on at them until they do something which is exhausting in itself. I'm grateful I had surgery as it may have saved my life, but at the same time, I feel let down, as I  thought if I needed surgery and was in pain, it would be dealt with within days, not months and I wouldn't be left to cope with the pain and other symptoms on my own. Always thought that if you had a cancer diagnosis, there be regular monitoring, blood tests etc but my GPs are disinterested. I go for six month check and CT scan in September so keeping my fingers crossed.

12

Hi Heather, wondering if you managed to speak with someone on Monday about getting an appointment sooner? Hope you're feeling ok this week xx

13

Hi everyone.

Been a bit busy this month so im sorry for not reolying to everyone for so long.

Thank you all so much for making me feel like im not alone in this. It seems like youve all had it worse than me! I feel for all of you.

Im STILLLL waiting for a date. Ive called 3 times in the last 2 weeks. Last time i was admitted they told me id have a date within the next ten days....

Nope

Nothing.

I even gave them 10 working days.

Still NOTHING!!!

Its craziness!

Its pretty disgracful if you ask me. Fortunately my pain has been minimal over the last few weeks. Thank god as my son just started school. God knows what ill do if i get a bad attack when he has school!

Hope your all doing well.