Have you been living with GB stone for a long, long time? How are you?!

Digestive health
1

Dear forum members,

I've been having a 23 mm stone at the outlet of my GB for 3 years now, and first I thought I could cope with it by sitting on a low fat diet, drinking herbal teas (quebra pedra) etc., but lately the pain flare ups have increased in frequency from less than once a month to every 3 days and I've decided to go for an operation on GB removal, which is planned within the next couple of months.

But I am still hesitant for several reasons:

1. Carelessness of the doctors - the impression is that they don't want to know anything about your problem (no MRI, no ultrasound - nothing) just cut your GB out.

2. After-effects - infection, hernia*), damage to other organs.

3. I think that if it's possible to live without operation - it's best not to have it.

So to cut the long story short - I wonder if there are people on this forum or your friends who have been living with GB stones for a really long time (like 10 years or more) and if you have - how do you cope?

Thank you very much for any feedback

*) I was told by the pre-op consulting doctor that 10% of patient after open operation have hernia

2

Hi, i've been living with my GB stones for 8 years now. Recently i did the ultrasound and got multiple stones. That's what im afraid of after surgery coz i've read a lot of people complaining of pain and ang got hernia. My mom also have GB stones but til now she didnt took the Op as she is Diabetic abd she had stroke last 2 years ago. My concern also, recently my cholesterol raised a bit high and my protein.

3

Hi 

I endured 15 years of misery not realising it was gallstones ..mis diagnosed by GP ... After 15 years I was living on boiled potatoes and boiled veg no meat no caffeine no sugar no fat .. I often felt a large swelling  under  my right hand rib cage which I realise now was my liver enlarging ..I went yellow at one point and thought I had consumed too many carrots ... 

My nerves were shot with fear of a colic attack which occurred annually and I had constant pain like a mouse gnawing at my rib cage ..

when I was finally diagnosed with enormous gallstones over 15 of them ..I was terrified of the operation ..

but my life has been transformed ..my anxiety has settled ..I can eat a normal diet meat, cheese , curry, spice it's fantastic..

no pain, no awful side effects ..

all I can say is why suffer out of fear of a risk which is a small percentage ...your doctor tells you the risks so u won't sue . Not because they are likely to happen...my specialist said he had removed every gallbladder in Cornwall in the last 5 years and he had never nicked an organ or had any surgical complications but he had to inform me of the risk..

hope that helps 

4

edz37563 and  sally 14743, thank you so much for sharing your experience. sally, you really got me thinking - maybe I should just go for it! Particularly becuase this is a second time I request it (the first time was a year ago and I've refused it after reading around this forum, when the operation date was already offered).

5

Hi,

You sounds similar to me. I have multiple gallstone, for 6 years. May have had few attacks 3 and 5 years ago but apart from that not much, don't have typical gallbladder pain as far as I know. Have already cancelled one op last year but that was due to other health problem. Now due to have op this Thursday, seriously considering cancelling it ...

6

Hi col69,

so you never had GB pain over 6 years?? That's perculiar. How does the stones show then? Do you feel nausea, indigestion, 'blown up' stomach? Is your stool OK?

I have all of these plus periodical ~once a month flare ups of pain (low to moderate, but long lasting like 3-4 hours per fit), which is usually come night and lasts 1-2 days. When this happens I take co-amoxiclav for 3 days and that helps until the next time.

7

Hi Yanavel,

May be once. I'm not sure, I have another ongoing problem (chronic pancreatitis) that causes abdomenal and back pain, that's why they want to take it out, to see if it helps that and stop further damage to pancreas. Trouble is gallstones happened after I developed chronic pancreatitis by some years, so I don't think they are cause of problem, but may contribute to it possibly, but no one has been definitive on that. 

I get some nausea, bloating, pain all over back and mostly left side of upper abdomen - all could be caused by either problem .... Where does your pain occur and what's it like (stabbing, deep/shallow, pressure) ?

8

If you have not had an ultrasound or MRI scan how do you know you have a gallstone?

I was diagnosed at Christmas do not know how long I had had gallstones.

If you are having flare ups every few days how on earth are you going to live with this for the rest of your life?

I had my gallbladder removed 4 weeks ago and am already feeling much better, so all I can say is that this is the road I would go down.

There may be other things you can do which will ease it for a bit but if it is still there it will rear it's ugly head aqgain from time to time.

Your reasons for not having the op are really looking at the worst scenario, look on the bright side.

Take care and keep in touch

Sarah

9

May be once. I'm not sure, I have another ongoing problem (chronic pancreatitis) that causes abdomenal and back pain[\quote]

Sorry to hear about that. I had been hospitalised with an accute cholecestitis 3 years ago (excruciating pain lasting for 4 days non-stop), and it's then when they found the stone via ultra-sound.

Then, 2 years later (May 2014), when I first requested the op a year ago, I mixed up my diagnosis and said I had pancreatitis, and the per-op consultant told me that in this case a GB removal is a must.

The pain is dull & distibuted over the whole stomach, like pressure + intense nausea, I wake up and can't sleep when it's happening.

10

Hi Sarah,

I had Ultrasound 3 years ago, that's when the stones were found.

Frequent flare ups only happened to me this March-Arpil, before that they were like once every 1-2 months (the longest 'break' between flare ups I had was 4 months). So I sat on an extremely low fat diet (no butter, no cheese, no oil, no frying; all other food with less than 5-10% fat) hoping that would help me reduce or even avoid them completely, but to no avail.

I am pleased to learn that you are having positive experience with the op so far, I wish you full recovery soon. Maybe I will get mine removed too. Will keep this thread updated

11

Sounds different to what I suffer from. As you say if you've had gallstone pancreatitis you can't mess around. Good luck with whatever you do.

12

My experience with my GB was not a plesant one jus like many storu below.I had my GB removed on may 18th 2015. I think You should give yourself time, figure out a data and time when you think your stable before doing it that day..... You choose not the symptom compelling you.

This way I think you know before surgey you know after what has change. This is something I did. Don't panic just have someone to take u in and help you thru . But get it out my friend before other complications happens infections is number ONE.

13

sorry for the misunderstanding. I don't have cholecestitis, not pancreatitis. You said you have it, that's why I wrote that. The consultant told me that with pancreatitis removing GB is absolutely necessary (he told me that because I told him the wrong diagnosis by mistake). I thought you might be interested to know that.

14

I don't have cholecestitis = I have cholecestitis

15

Thanks for sharing that. Interestingly, after I've requested the op in the beginning of april, I didn't have any flare ups for ~5-6 weeks. Just had one mild a few days ago. So I am relatively stable at the moment and not much bothered by the flare ups.

However, the per-op consultant I saw last week told me that in my case the probability of conversion from laparoscopic to open operation is much higher than normally. That's because (he said) I had gall stones for a long time (3 years). So I presume that with stones the situation is only worsening with time, thus I think I should go for the removal this time.

16

 Yes, GB get worse with time atleast what mine almost did for me . I did jus in time.  You should get it out this time . Have you had or is schedule for blood work yet ? keep us updated as you go thru .

 

17

Thanks for explaining, harrington.

Yes I had my blood tests taken after the per-op consultation on May 19th. They should send the results to my GP together with a letter offering an operation date (preliminary within 2 months).

I aksed the consultant if I could have MRI before the op and he replied normally blood test shows everything they need to know for the op, and that he will only prescrive MRI if blood tests are abnormal. So I want to get a copy of blood tests and to show it to someone knowledegable before the op.

Will keep the thread updated.

Thanks

18

Hi I have had GB pain since my early 20s ( am now 44) . Three years ago scans found hundreds of stones and sludge so was referred for GB removal . Decided to wait and see and not have the op as you are considoring . 3 years down the line only 1 episode of pain and being as careful as possible with diet .... Sadly to no avail - in December I developed out of the blue severe pain - admitted to hospital - morphene - sent home - pain persisted for he next three days - couldn't eat or drink - back to doctors who arranged for blood tests in a weeks time - day after - eyes yellow and urine like coca cola and severe pain 24/7 . Admitted to hospital with severly enlarged inflamed GB and acute cholecystitis ( stone blocking bile duct to liver ) slowly poisoning me ! The stone had migrated and stuck ! IV antibiotics and a stay in hospital for a week . I was left for a month still in pain whilst waiting for an ERCP ( camera down throat to remove stone ) 2 days before this procedure the stone shifted itself but the GB was still enlarged and malfunctioning . Leaving it in situ is not an option when they are diseased . 4 months after this episode and 3 stone weight loss I finally had my gall bladder removed (UK waiting lists) . I am feeling relief and am pain free apart from bloating and some discomfort with certain foods - I cannot eat green leafy vegetables - too hard to digest or mashed potato !

I had the gall bladder removal by laparoscopy . 4 teeny neat scars . No infection and no hernia because it's least invasive . I was informed that once the gall bladder is diseased it will not heal itself and I think whatever you do, you have gone past the point of no return and it has to be removed as complications far worse than gall bladder pain arise . It isn't worth waiting around for that .

I now eat a low fat healthy diet and hope to remain well . my decision to have the GB surgery was left till I had no option and it became a medical emergency . I believe diseased gall bladders are a time bomb waiting to happen . I hope this helps

19

 I had similar symptoms like you mentioned coco urine , inflame etc except mine was in a chronic state. I had my GB removed on 18 of may and is a good feeling my health is up. I'm not sure why people would want to keep this GB for long... if your reading this and are having problem .... don't keep it removed it !

20

Hi Rachel,

thanks very much for this story, very learningful for me and I hope for others who are in the same boat. I will go for the GB removal op most certainly.