What next?
Posted , 4 users are following.
So, about 8 weeks ago I started experiencing a stabbing sensation in the right side of my abdomen whenever I burped involuntarily (weird but it was only with the kind of burp where your tummy kinda pops out the way) and after a week I'd had enough and popped to my GP who instantly diagnosed a possible case of gallstones due to the accompanying symptoms of diarrhoea, acid reflux, heart burn and excess gas, and referred me for an ultrasound. The pain however continued to develop and could no longer be treated with the paracetamol she initially told me to take and I was put on cocodamol. This seemed to do the trick most of the time and after reading up on things I started to completely agree that it had to be gallstones. Fatty meals had me in agony, the pain stayed in the same place and developed to hurting my back and at the base of my right shoulder blade. I had bloods taken and everything came back normal, five weeks on and I finally had an ultrasound. Got in there expecting to get the answer I needed, as, if there were stones I was being referred straight away to a surgeon to have my gb removed. Much to my surprise and anguish the sonographer could not see any stones and he definitely had a good hard look. I came out of the appointment deflated, and in severe discomfort. Over the following week though my symptoms subsided to the point I took a total of two cocodamol over the period instead of between 6 and 8 per day in the lead up so I even started doubting whether there was anything wrong. Skip forward a week and I got a little bit smart and 'treated' myself to some fried chicken. Cue the return of my pain to the extent my cocodamol are barely making a dent and all previous symptoms have come back. Problem is, even though I had verbal confirmation of a lack of stones it's the NHS and it apparently can take 2-4 weeks for my GP to receive the ultrasound results. Meanwhile I'm stuck in limbo not knowing what's next. I've seen mention of Hida tests being done but I'm not sure how readily available to people that is made on the NHS and even then it seems that some people with what seems like low results to a layman have been told that's fine and left to suffer. Just wondering if anyone being treated by the NHS has had everything come back normal and still had their Gb removed by referral from their GP and also whether they had a fight to get further testing or if it was offered as the next step in treatment?
0 likes, 12 replies
s503 Caliallygogo
Posted
carol02471 Caliallygogo
Posted
Hi it doesn't have to be stones it can be the gallbladder not emptying properly so the hida scan is the only way to know.
My daughter was NHS & they told her nothing wrong for 3 years had hida private and instant results, not that having the GB out has helped her sadly she now has Sphincter of Oddi Disfunction level 3.
So if you can survive with diet as long as possible that's really good but if not most of the university hospitals in the UK have the facilities if they have a nuclear medical unit.and you can ask for a nhs referral to any hospital or specialist via your GP. I don't know where you are but Southampton General hospital has one.
Good luck
Caliallygogo carol02471
Posted
As it stands right now I'm in pain no matter what I eat, even the most bland foods cause minor discomfort so that's why I'm just so eager to have it over and done with and get rid of the source of the pain. I'm in Glasgow so we do have a number of really decent hospitals, just hoping I get the referral from my GP as going private isn't an option financially at the moment.
carol02471 Caliallygogo
Posted
Beenthruit Caliallygogo
Posted
Hi
So sorry you're having problems. This didn't happen to me but there are many posts on this site of similar cases to yours. Maybe you've not got stones as such, but sludge which is tiny stones resembling sand than may not show up on ultrasound?
I never had a HIDA scan. I had ultrasound, MRI and CT, also two ERCPs, but there was never any doubt that I had gallstones.
Your symptoms do sound like a gallbladder issue. I never burped or had much in the way of acid reflux until my gallbladder issue reared its ugly head. Have you had any nausea or sickness? Also lack of appetite which I had for months before my first bad attack and overwhelming tiredness. I felt generally unwell but couldn't quite work out what was wrong with me until the pains started. Even then I was misdiagnosed with kidney stones and it wasn't until three months later after a really bad attack that I was diagnosed with gallstones.
If it is gallbladder related be prepared for a long wait. We are not called patients for nothing! There are huge numbers of patients on the waiting lists for surgery. I was lucky and had my surgery only four months from my diagnosis by which time I was desperate. I had been ill for seven months by then. I had to push hard for surgery, reminding them of the 18 week referral to treatment limit as I was exhausted by attacks that lasted up to four days. I understand the 18 week rule is being relaxed as hospitals cannot cope. A low fat diet will probably help control the pain for a while. Personally I don't like any codeine based painkiller as it's very constipating and one has enough digestive issues with gallstones without adding to the list, but if you are tolerating cocodamol and it relieves the pain that's fine.
You sound as if you've a decent GP. Hope you get sorted out soon.
Caliallygogo Beenthruit
Posted
I've had nausea start in the last few days and my appetite is slowly disappearing. It's so strange as every week it seems I get a new symptom to add to the list, just dreading if it does eventually become vomiting as I don't deal well with that kind of thing lol.
If I look back over the last year or so there's probably been signs something was wrong but as the pains I was having could be put down to other things and my fatigue i blamed on working, running a house and having an active two year old.
I had read about the 18 week limit being relaxed but not sure if that's happening in Scottish hospitals as what I'd read was England and Wales so hoping they're still aiming for that time period up here or as close to it as possible as I can't cope with this for too much longer, especially because it's steadily progressing. I have been trying to control my diet to help but it seems so many things trigger the attacks that I don't know what I can eat without subsequent pain, which is probably why my body doesn't seem to want to eat anymore lol.
I definitely have to hand it to my GP though, she's been fab and I'm just hoping she continues down this road of investigation and if she doesn't ill be pushing for a second opinion by another GP.
Beenthruit Caliallygogo
Posted
Have you googled BRAT diet? This is a medically approved diet for people with digestive issues - not a gimmick. It stands for Bananas, Rice, Applesauce, Tea/toast. It may be worth trying for a day or two to see if it helps. Obviously it's not intended for long term use- just for when symptoms are really bad.
Apart from lack of appetite, I stuck to a diet sheet the hospital gave me which was low in, but not no fat. I was even able to eat eggs so long as they weren't fried and many people can't. Also eating wholemeal bread and cereals helps soak up excess bile if that is the problem. Otherwise it was lean meat, chicken and fish with vegetables. A little fruit too. No processed food like sausages and no baked goods other than bread. Quite restrictive. Just healthy eating basically. The attacks slowed down on this diet and didn't last for as long, though towards the end I did have some bad attacks.
I don't know how you manage if you've a two year old. My children are adults now and I can't imagine what it would have been like with small children and being in pain.
Caliallygogo Beenthruit
Posted
She's three now and has a little bit of understanding in regards to sore tummies as my mother has cancer of the oesophagus and stomach and she has to be careful she doesn't hurt gran so we've used similar techniques for getting her to understand that mummies tummy isn't feeling very well, but at the same time, letting her know it's different to grannies sore tummy.
Thanks so much for the diet advice, definitely going to have to look into it as have only managed to stomach one meal today, had numerous bouts of nausea and pain as well. At least on the bright side I might manage to lose some weight, but I do miss eating with no consequences other than being a fatty lol.
Caliallygogo
Posted
Just a little update. Called my GP surgery this afternoon just to check if my ultrasound result was In and the receptionist has told me that there's a note that result will be discussed at next appointment. Getting up early and booking in tomorrow but really hopeful that the sonographer found something as when all other results have been clear the receptionist was able to tell me over the phone.
Beenthruit Caliallygogo
Posted
Caliallygogo
Posted
Well, eventually managed to get an appointment today with another GP as mines is off on holiday. Went in and he read the results which basically said that there were no gallstones and that everything was basically normal except a couple of fatty deposits on my liver which the doctor has stated would have been a long term thing and is down to my diet and the fact I do not eat the right type of foods (Fully aware of this and am getting more resolute in the fact I have to do something about it).
He was basically ready for sending me packing once he gave me these results but I basically asked what they planned to do next as I was still suffering from a million and one symptoms, all of which started after the initial bursts of pain and explained that my syptoms were increasing as the weeks go by. He asked the same questions I was asked the first time I was there and a few more. Did an examination, in which this time when he pressed at my gallbladder I was in actual pain (every other time it's just been uncomfortable). He agreed that if he didn't have a result sitting in front of him saying I didn't have gallstones that he would be diagnosing me with gallstones. He decided to put me on buscopan to help with my bowel movements, take more blood and run another two tests (not sure what he's running tbh, think it may be liver function, even though that was only done 6 weeks ago) and has given me a referral to a gastro specialist. Just need to wait on this appointment coming through now and hope that they get to the bottom of this.
I feel like I'm falling apart and can't believe some people have managed to go through this kind of thing for years with no answers, I'm at the end of my tether and have had enough of the pain and I'm only around 6-8 weeks deep.
Beenthruit Caliallygogo
Posted
Well it sounds as if you're a bit further forward in getting a diagnosis. I'm afraid the NHS moves slowly. It is so overstretched, they cannot cope and digestive issues are common, so there are lots of people on the waiting lists. It could be some time before you get a diagnosis. In the meantime try to stick to a low fat diet and take painkillers when you need to. I know it's not a good situation to be in, but I don't know what else you can do. Maybe going to A&E when you get pains will hurry things up?