Fed up of feeling sick

Hi Jay

I have been to a&e twice already with a severe attack, on both occasions it was over 4 hours until I saw a consultant by which time the worst of the attack was over and I was sent home with painkillers and told I would just have to wait until I get a date. They have said that they are very hesitant to operate in emergency situations and will only do so if the gallbladder perforates so it really is a case of put up and shut up! Glad it worked for you though, how are you feeling now post op? How long was recovery x

Hi Sarah

Thanks for taking the time to reply to me, it's always good to hear from people who have had a successful op, I too have a hernia but luckily as it has been diagnosed pre surgery my consultant plans to repair it at the same time.

I generally do eat a low fat diet, mainly grilled chicken and boiled veg, although this is very limiting and Boeing, and is making eating our almost impossible, there have been a few family celebrations of late which have involved meals out, I just order the safest looking option and pick at it. Any low fat meal ideas you have would be great x

I was told less than 3% fat and that's what I've eaten give or take for the past five months. It's incredibly hard to stick to but *touch wood* I have not had to be readmitted to hospital. Plenty of fruit and veg. I have baby new potatoes and veg or white rice with chicken breast meat or pork loin with all visible fat trimmed before cooking. I also have less than 5% fat steak mince I brown and drain thoroughly. Lunches have been the hardest for me. I tend to have beans on toast no spread. I got sick of thins with wafer thin ham. I have weetabix every morning. I have fat free yogurts and fruit for pudding or snacks. That's pretty much my diet. The hospital said I could eat eggs which is odd seeing as they are 9% fat. I spoke to the nurse practitioner and she said no way. So I haven't had an egg in 5 months but fresh egg pasta is low enough in fat. No fat is good fat so forget nuts, certain wholegrains, oily fish or olive oil or sesame oil or any oil. Hope that helps a bit.

Hi, there E11eth, Sorry you're having so many difficulties.  I am in the states here, so not as many hoops to jump through, but first, I had to convince the MD's here that I was really ill before anything got done.  All the suggestions for diet you received from everyone were excellent!  I can make one more, I think.  Try to find enteric coated peppermint oil capsules to take.  They dissolve in your small intestine, where your gallbladder empties, so can help if you're having cramping.  Sometmes peppermint can aggravate acid reflux if it dissolves in the stomach.  Also, you might want to try drinking water with electrolytes added.  In the US it's called Smartwater.  I think that staying hydrated helps, because you naturally can become dizzy, fatigued and disoriented if you aren't drinking enough water (are dehydrated).  I used Gatoraid when I first got sick; but it has too much sugar, etc. in it.  I know that there are a lot of scary things that are being published about the long term effects of proton-pump inhibitors like omeprazole, but you do need to get the acid reflux under control.  Severe acid reflux can lead to serious problems, like Barret's esophagus, so that's not something you want to mess with either.  Right now, I think that you need to survive long enough so that you can have the surgery, and keep working.  I was essentially down to eating bread and water during the day, and not too much of that, before I had surgery!  Low fat is the ticket, for sure, and frequent small meals, so that your digestive system doesn't become overwhelmed.  Good luck, and let us know how you do!        

Hi, Sarah, I was diagnosed with IBS-D before my GB was taken out.  Afterwards, they said I was producing too much bile.  So, you could still be producing too much bile, which is causing your IBS, especially now that you have no gallbladder. Please let us know how you're doing!    

When I was diagnosed so many people came out and said they'd either had their gallbladder out or knew someone that did and it changed their life. I had no idea how common it was. It's like a secret club. People naturally seek out forums when things go wrong although there are plenty of happy endings here as well :-)

Hi Lisa

Have you heard anything about your complaint yet? Got my fingers crossed for you. And yes your right it is like being in a secret club, only person who I know who has had the op is my uncle, but as you start talking to people it would seem that almost everybody knows of somebody who is suffering, really not sure why it's such a big secret, if people spoke more openly about it there would be far more understanding on this debilitating condition x

Hi there, no, nothing at all. I was due to have the response by the 2nd of March but after I emailed them they said they would let me know when it was ready. I got a call from the local clinical commissioning group on Tuesday to tell me I'd get an email yesterday and either the hospital would give me a date or they had other options for me to get me treated more quickly but I'm still waiting. This has been going on since the end of January when I submitted my complaint after being told I'd have to wait until June. From October? I don't think so.

Remember this, you have a legal right to be treated within 18 weeks. Short staff or over capacity are not legal reasons for delaying treatment. If treatment cannot start within 18 weeks then it is the local commissioning group's responsibility to find you an alternative treatment provider. Sorry if I sound like I'm keeping on but actually knowledge of your legal rights could prevent complaints. You may hear the figure 9/10 patients are treated within 18 weeks. The leeway is for specific circumstances only. Patient cooperation, IE if you do not turn up for appointments, it's clinically appropriate time delay treatment or the patient chooses to wait longer. Short staff or hospital capacity are not valid reasons for delaying treatment. It's not the hospital that are liable, it is the local clinical commissioning group. Also I found out yesterday that tests should not stop the clock!

I only want to stop others having to go through the same thing. Navigating round the constitution is hard and frustrating. It's taken me weeks to find all this out. I just hope it helps someone else.

Hi lisa

Go on as much as you like, I was under the belief that I was entitled to my treatment within 18 weeks but to be honest with my local hospitals statics 9 in 10 people receive treatment within 26 weeks, I had a Google the other day so I'm not hopeful for 18 weeks to be honest, so it is good to know where I stand if it does drag on for a long time.

Is the 18 weeks from the orginal consultants appointment? x

No, it's the referal to treatment time. The 18 weeks waiting time starts on the day the hospital receives the referral letter or on the day you make the booking for your first appointment, via the choose and book service. It's enshrined in law.

The 9/10 or 90% is for patients with a specific criteria only. Only IF the patient doesn't turn up to appointments, OR IF it is clinically in the best interests to wait (but this has to be a documented reason) OR IF the patient chooses to wait longer. That's all. They should not keep you waiting any longer for any other reason. If the hospital cannot treat you within the time, the clinical commissioning group have to take all reasonable steps to ensure you are treated elsewhere more quickly.

My advice would also be, if you haven't heard by the 15th week, enquire as to where your date is and when you can be expected to be treated. If they tell you that you won't receive your treatment by the 18 weeks you have a right then to write to the local clinical commissioning group and request an alternative provider who can see you more quickly. That little golden nugget of information, I wish I had back in January when I was told it would be May or June. I can't say it louder or often enough. Information is scarce. People are afraid of asking. Don't be, it's your legal right.

Thanks Lisa, that is really useful to know, my GP made my referral on Jan 5th, it was the same day I had my scan, he sent the referral as soon as he received the results, so from what you are saying my clock starts ticking on the 5th of Jan and not the 19th ( the day I saw the consultant ) as I orginally thought? x

Yep it should be the day the hospital recieved the referal. If it's done electronically it should be the same day as you went to your GP. Sadly the hospital have now told me they can't predict when I'll have my op so I've had to switch hospitals with a fresh referal. I'm not happy about that. I've waited over five months already. I have an outpatient appointment in a months time, that's six months and will be placed on a new waiting list. I'm sick and tired of it but the new hospital doesn't have emergencies, treat cancer or complicated cases, treat anyone who has a bmi over 40 or have an ICU. I think it will be June or July. :-(

You must be so frustrated lisa, I really do hope you get seen to soon. I will definetley start monitoring mine from the referral date now

I would and if you don't get a date then go to your local clinical commissioning group. I didn't know at first but if I did then I could have done this two months ago.

Lisa

I really appreciate the advice, even my gp is amazed at how long I have been told I will have to wait, went to see him last night as felt dreadful for days, he said it beggars belief at how long you are expected to wait and in his own words it will cost the NHS more in the long run due to medication and A&E admissions!

Keep me up to date with what is happening with you x

It's true. The wait is horrendous and will cost the NHS dearly. Yesterday I really did not feel well at all. I was so tired and the colour drained from me. I had vertigo and stabbing pains in my back with a dull ache under my ribs. I felt so sick. I am more scared at going to hospital than Ive ever been before. Considering I managed three years of attacks before I sought, help that says something. Luckily I have a good GP so that's where I'll go if I need to. Have they given you any indication of a date yet? Have to say Mrs negative me will say what they say and what they do are two different things! X

No indication on date as of yet, although the consultant did advise a 4 to 5 month wait in January so I'm estimating May/June time.