Suspected Gallstones, Surgery Anxiety, Feel so Lost
Posted , 13 users are following.
Hi!
I have suspected gallstones (symptoms all point to it, but still waiting for an ultrasound). Since mid August, I've had 8 excruciating pain attacks which wake me up at night, last for hours, are always 8/9 out of 10 in terms of pain, and have ended up with me in A&E or at my GP practice on numerous occasions. The pain is always on the right hand side, under my ribs. Very characteristic of gallstones and I have almost all the risk factors for them so it's very likely that's what it is.
My problem is, I have severe anxiety, and all of this is just making me incredibly anxious. I'm scared to sleep because the pain always happens at night. I'm scared to eat anything because I know certain foods can make it worse (3 out of the 8 times its happened was after eating a McDonalds). I won't let my partner of 5 years share a bed with me anymore because when the pain happens I feel so ill and sick that I just want to be on my own (I know it sounds silly).
I'm terrified of the pain. Last time it happened (a few days ago), I was also horrifically sick and had severe stomach pain too, but I don't know if this is because of my gallbladder or because of the amount of codeine I took on an empty stomach.
So now I'm also wary about taking my painkillers in case they make me sick.
I know if it is gallstones then I'll likely be offered an op to have my gallbladder out, but this terrifies me too. I've never had surgery before. I'm terrified of being in hospital, being in pain, being under anaesthetic. I'm overweight so I'm worried there'll be complications or they'll have to do the surgery open rather than keyhole and leave me with horrific scars.
I've also read plenty on this forum and online about bowel problems after gallbladder removal. I already have IBS so the thought of this is scary too. I've also seen that you can still get pain attacks even after the surgery, so I feel like this is overall just a lose-lose situation for me. Don't have the surgery and live in fear of the pain, or have the surgery and still possibly have pain and other issues.
Can anyone give me some advice or words of wisdom? I can't cope with all this. 😦
0 likes, 58 replies
Guest charlotte82605
Posted
It's not nice to live in fear of the pain attacks, but if it does turn out to be gallstones and a removal is recommended, it is better to have it, than run the risk of a blockage. My cousin ignored her attacks and developed blockages causing pancreatitis and liver problems. These are really serious and potentially very dangerous. She had her gall bladder removed as an urgent case 2 months after the pancreatitis. She said yes, it was painful, and she still feels only 60% even now after 4 weeks. But the pain is now gone, although she still has some toiletting issues. But it is early days still.
As for the IBS, I deal with Diverticular Disease which is equally as painful, with similar effects. Do you keep a strict food diary, to enable you to identify your trigger foods? It might help identify the foods aggravating your gall bladder as well. I personally can't take gluten and fat, so stick to gluten free and 0% or low fat foods. I have lots of home made blended soups, porridge, and grilled fish and poultry with steamed veggies. My cousin is now avoiding cheese, which she loves, chocolate and alcohol, and having 4 small meals at 9am, 12pm, 3pm and 6pm. For example, 1 weetabix, 250ml soup, fat free yogurt, poached salmon with veggies.
I stick to paracetemol, as I find other painkillers upset my tummy or affect my DD. I also look to relax, by having massages. But something like yoga or meditation can help with anxiety. Good luck.
sal79893 Guest
Posted
all normal dont worry. takes about 2 years for body to go back to normal.
audrey32349 charlotte82605
Posted
Just had my endoscopy today and the Doctor agreed with me that the gb surgery can and does create potentially serious issues with ibs for a fact.
I am down to eating white rice, a couple carrots and white meat chicken or turkey. For beverage I sip water as sometimes even that makes me sick. The last few foods that were tolerated with my ibs no longer are tolerated due to the bile from the gb surgery. I am sick all the time except when I go to sleep.
cerriann24153 audrey32349
Posted
I have IBS and gallbladder removal hasn't made it any worse
gavin05746 cerriann24153
Posted
Well, of course. That's to be expected. We are all made up of an incredibly complex structure of literally billions of genes, that have taken hundreds of millions of years to evolve. What I'm trying to say is that each body is absolutely unique, & reacts to the environment in a different way, so what your body might tolerate, someone else's will completely reject. We know literally nothing about the human body, even though we've been studying it for centuries, & thousands of books, journals, & papers have been written about it. We've hardly - pardon for the cliché - even 'scratched the surface'.
audrey32349 charlotte82605
Posted
Just had my endoscopy today and the Doctor agreed with me that the gb surgery can and does create potentially serious issues with ibs for a fact.
I am down to eating white rice, a couple carrots and white meat chicken or turkey. For beverage I sip water as sometimes even that makes me sick. The last few foods that were tolerated with my ibs no longer are tolerated due to the bile from the gb surgery. I am sick all the time except when I go to sleep.
sal79893 audrey32349
Posted
raise your bed by 6 inches from the head board side. that will take pressure off.
gavin05746 audrey32349
Posted
I don't if it will help, but have you tried selectively experimenting with each individual food item? It's laborious, time-consuming, and potentially painful, but it could be the answer to your problems. Go through a wide variety of foods, trying each one separately, and keeping a written record of your body's reactions. That way you can build up an inventory of foods you can tolerate. Try different types of water: e.g. mountain spring water, filtered water ... Try 'unusual' foods you've never eaten before: asparagus, lemon grass, pomegranate, and so on. It will definitely be worth the effort. Your condition is one you have to learn to live with, and will involve much experimentation, & a strict regime. For example, I've given up drinking alcohol, as I do not want my GB to be removed, & I'm prepared to make that sacrifice to achieve my goal. I wish you strength, perseverance, & an iron, unbreakable will.
gavin05746 charlotte82605
Posted
I don't know what you want to hear: kind words of supplication, or the harsh truth; I'll go for the latter. From what you've described, your condition is extremely serious. If just one GS drops into, and gets stuck in the GB tract, it will cause an infection, which, in the worst case, could result in a fatality, so you really need to do something, if you value your life. So, go on, and keep to an extreme diet: ABSOLUTELY no fatty food, plenty of fruit & veg, ALWAYS small portions, drink lots - 2 to 3 litres a day, if poss, NO alcohol - & I mean NO alcohol. White meat only - no read meat, NO butter ... Your GB has reached an extreme state of dysfunction, so the above may already be too little, too late. Oh, and GET YOUR BODY WEIGHT DOWN to an acceptable level. The alternative is GB removal ASAP. One's condition at any one time can never be described as one-dimensional. Yours is not simply physical, but also psychological; see a psychiatrist to help alleviate (you'll never get rid of them - they're part of your psyche) your anxiety issues, & build up a sense of self-worth. Ask to speak to someone who specialises in GB problems. Have you had an ultra sound? If not do it now. That will immediately establish the presence, number, & size of the GSs. I'm speaking from personal experience. 16 months ago I had an excruciating GB attack. The doctor advocated removal the same day. I said no - I was travelling to Egypt to start a new job, & I couldn't afford not to go. The doctor was furious, but I literally took my life into my own hands, & flew to Alexandria. I radically changed my diet, implementing all the above-mentioned, & I have not once had an attack since. I just recently had a mild 'ache', and, of course, I had strayed from my strict diet. Now I'm back on the straight and narrow, and cam already feel the pain subsiding. We are such a complex species. Time & time again we tell ourselves where the problem lies; we know what to do, but what lets us down is our lack of willpower. Your partner is obviously a huge potential saviour. Confide in him, & ask for his support in implementing the best strategy to help combat your problems. What about your family? I'm sure they'd be willing to help. BTW, as of last week's most recent Ultra-sound, my biggest GS measured 5.5 mm. Good luck, and God bless.
matt57085 gavin05746
Posted
I think the OP might be from the UK Gavin and if that's the case you can't just get consultant appts and tests quickly. To see a consultant is 4 to 6 months wait. My last ultrasound i waited 6 weeks, 4 weeks for the results and same for my HIDA scan. I waited 2 months for my MRCP and 6 weeks for the results. I had a test for something else, waited 2 months and 10 weeks for the results.
When i was referred to have my gallbladder out it took 3 months just to meet the surgeon. It never came out in the end after another 3 months of p*****g about.
I also read on here of someone still waiting for surgery after 12 months.
cerriann24153 matt57085
Posted
I'm from the UK and from my first attack, all the tests and surgery was 2 and a half months.
It depends where in the UK you are and how serious your case is. Mine was classed as urgent as my second attack resulted in a blocked stone and a 4 day hospital stay.
matt57085 cerriann24153
Posted
I agree, but 2 1/2 months isn't exactly quick for an urgent.
cerriann24153 matt57085
Posted
I said 2 and a half months from my first attack. So yes, very quick. Especially when you hear of people waiting years.
Guest matt57085
Posted
My cousin (lives in the south west of England) was urgent and was operated on in 2 months. She almost died with her first attack due to blockages, causing pancreatitis, liver, kidney, lung and heart problems. The only reason she waited that long was for the infections to be treated. As it was, there was still some residual infection, she was kept in for 12 days instead of the usual 1 - 3 days, and she has been on antibiotics for the 4 weeks since her operation. There's still a long road ahead of her. She is full of praise for the prompt treatment she received from the NHS since her first collapse, and whilst in hospital. Her criticism has been the total lack of follow up by hospital or GP since being discharged.
matt57085 cerriann24153
Posted
You've been very, very lucky👍
I've been around this group for over 18 months. I've seen one guy nearly die. A lady mucked about with referrals, being left of lists and it turned out she had gallbladder cancer. People living in pain for months/years, with gallbladders full of stones and sludge, all from the UK but most other countries from people coming through here have had instant care.
I have another condition (confirmed), by the time i see the specialist i need to see it will have taken 2 years and i will have to travel 65 miles to London.
matt57085 Guest
Posted
Glad your cousin is doing well after such an ordeal.
The NHS care when you get it is 1st class and the staff on the frontline are fighting an uphill battle for NOT enough money, I WOULDN'T WANT TO DO IT!
Honestly my hospital has lost most of it's services including maternity, emergency surgery and paediatric . People are having to travel 25 miles to have a baby which in rush hour could take an hr +. We've never had any cancer, cardiac or vascular services.
They've closed all the small ambulance stations, i have a few friends who are paramedics and they've told me if people now have strokes or heart attacks in certain areas they're doomed.
I've seen many people from the UK come through here and only got treated when their condition became acute which makes NO business sense whatsoever.
The Tory party wont the NHS to fail (which it is) so the idea of selling it off becomes easier.
bad94383 gavin05746
Posted
Hi Gavin,
I hope you are well.
I have just discovered I have Gallstones as well (my main symptoms is I feel nausea sometimes).
I am too looking for non-surgical options - have you managed to find any?
Thanks
BC