Gall stones now....

I have gallstones too that showed up an MRI or CT scan (can’t remember which). No one said a thing about them. I figure no one cares unless they were causing me excruciating pain. I am currently eating whatever and not having any adverse affects so I am living it up while I can. Hahahaha. I will be curious to see what others say. 

how long ago was that? I asked the doc to let me know if the size or number increased since it stated this just over 2 years ago.  I don't want another surgery unless its very necessary , but don't want it to be an emergency type thing cuz then you never know what kind of surgeon you will get and I'm a complex case.

I had mine for years...and I mean years...over 20 and no one care until I was screaming in pain and doubled over...then they did lap surgery and took the whole thing out. 

I had waited too long, it was huge and the doctor wasn't pleased because it was crushing a lung (it weighed over 1kg and was filled with a liter of black bile...potentially dangerous).

If and when you start to feel the pain (back pain between the scapula, right shoulder, up to the neck, knife pain under the right ribcage...any and all are possible including nausea, burping and bloating) then you need to consult.

If not they tell you not to bother.

P.S. we seem to be slightly more susceptible than other groups to gallstones.

Sharon

I get nausea sometimes and I get intermittent pains all over my abdomen but ive been having that since all my surgeries. I don't know what to think here or what to do. I am terrified of having any other surgeries due to so many issues in the past and don't they usually go in right where the ostomy was? that is where I had my hernia repair.... and does a colorectal surgeon do it or general sugeon? I was scared to have the general surgeon do my hernia repair as well but he specialized in hernia repair and he was with Cleveland Clinic where all my prior surgeries were. 

I'm following this because I've got gallstones per CT scans. They just told me about them but didn't talk surgeon. I'm wondering if they compared your new MRI to the older one? They should be able to tell you if there's been any changes over the last 2 years. 

If you do need surgery can you go back to where you've been having your 2nd j-pouch surgeries? 

I found a laparoscopic specialist who did j pouches through laparoscopy...we became 'friends' meaning there was a real conversation and complicity between us preparing for all of my surgeries.

When he saw the scan he put a rush on my surgery. He had already done I don't know how many hernia repairs on me (I've lost count) and knew exactly where to go in and how to avoid problems. The gallbladder is much higher up than the pouch so there were none, my tiny little scars (3) are under my right breast, and towards the middle...nowhere near anything that could put my pouch in danger. He also fixed a couple of things too. 

There was a lot of scar tissue going on in there because the gallbladder was so huge and adhering to stuff (explained the severe difficulty breathing and the feeling that I couldn't get enough air down into my right lung). It took 3hrs instead of the 1hr planned. 

A very good general surgeon who is specialized in laparoscopy would be my best advice, many of them now do j pouches that way so it would be a good match...But only if that is what you need...if you don't need the surgery now then keep their name close...but at least make the appointment to see them and have a conversation. It may help put your fears to rest.

Sharon

I looked at my previous tests and my gallstones showed up on my MRI 2 years ago (that was the first MRI that I ever had). I just had a repeat MRI this summer and it didn’t go into any details on size of the stones. I had the MRIs done at 2 different hospitals so there was no comparison done. 

I asked my kidney doctor that very question, to compare the scan from 2 years ago that showed them and this scan to see if number of stones increased or size . I spoke to a person in my jpouch and ileostomy group on Facebook and this woman has an ileostomy but she has had all her surgeries at the Cleveland Clinic as well, Dr Stocchi is her surgeon, she said no general surgeon will touch her gall bladder, and the colorectal surgeons told her they will only remove it if starts to cause issues due to risks of 2 previous surgeries.. I have had like 10 so I can guess the answer they will give me..lol. I contacted my GI Dr Shen and the general surgeon that did my hernia repair to get their thoughts. I am thinking I may just go get a consult with one of the colorectal surgeons there to get a game plan just in case it does cause an issue later on and they know exactly what to do. With all my prior surgeries and complications I don't want some hack opening me up and not having any idea what hes in for. My surgeon at the Clinic was the great Dr Remzi but he has left to NYC last year. I emailed him for his opinion as well, but yet to hear back from any of them. when my general surgeon did my hernia repair he told me flat out he would not attempt lapro due to my many surgeries and probable scar tissue.

So now I don't know if I am having symptoms or not from this? I have always had on and off achey abdominal pains and nausea here and there, but always assumed it was just from my 10 or so surgeries.. I have read there are 2 meds that you can take to dissolve gallstones? could take years though and they will come back within 5 years..

Poucho, does the pain kick in of you eat fatty foods, like for example a bowl of ice cream?   Fatty food causes the hall bladder to contract, if there are stones, that's what causes the comfort.

Have you asked if they can be smashed ultrasonically? That is non invasive and painless.

There is a naturopathic remedy and something that I have actually done, but I wouldn't necessarily recommend it for someone who has bad case of the stones.   Just Google gall bladder cleanse... Basically you drink olive oil mixed with lemon juice (yeah it's not nice).   The olive oil causes the hall bladder to contract tightly, in theory squeezing out the stones. The lemon juice helps dissolve the stones.  For a week or 2 before hand you are supposed to drink Apple Juice to soften the stones

You may have to do it several times... Ulch... .. and if a stone gets stuck it can be quite painful And you probably won't want to go work the next day lol.  I've not tried this stuff the pouch though..... It's a make or break fix lol

I just get random dull aches in my whole abdomen whenever so I have no idea as far as diet goes. I have read about them zapping kidney stones but not gall stones. I emailed Dr Shen this afternoon to get his thoughts on this.

Well if you can eat a bowl of ice cream and not get discomfort, then it's not necessarily gall stones, and makes it more likely the cleanse above may be useful.

Gall stones can be very painful, I'm sure you would know if you had a serious case. 

Ultrasound is definately used for gall stones, hopefully that would be an option for you.

Not necessarily true.

I am an ice cream addict and always was, especially when nothing else would go down...or post-op (memories of tonsillectomy??) ...And the ice cream never caused me problems (other than maybe the reallllly expensive kind that was very high in cream content)...the cheap ones are much higher in sugar and lower in cream so they didn't upset my gallbladder, just my hips!

Sharon

After reading about removal of gallbladder, it says it can cause diarrhea . I already have issue with loose stool and get some leakage already, will this get worse?

Not for me Poucho, and I would have preferred it...no change whatsoever except for the pain...that is gone...but we are all different so I cannot promise you what the side effect will be.

Sharon

So here’s the thing. If you have frequent scans, you are at risk of incidental findings that seem worrisome, but really are not. There are millions of people running around with gallstones but they don’t know it because they have not been scanned. Same thing with bulging discs and benign growths in the abdomen. 

Generally, gallstones are not an issue unless they cause an issue. Also, it is rare to become a sudden emergency. I’ve been walking around with gallstones for a couple of decades. I still have my gallbladder. The point is that the presence of stones does not determine if you need your gallbladder removed. It is the presence of an inflamed gallbladder or a stone lodged in the common bile duct.

Jan

so Jan, would an MRI state if the gallbladder was inflamed or if a stone was lodged in the bile duct? it states, "Biliary: no bile dilation.Gallbladder is filled with stones with minimal pericholecystic stranding".

My kidney doc was the one who said I may want to consult with general surgeon in regards to the gallstones. It stated same finding on an MRI 2 1/2 years ago, but nobody suggested this but this time they have. I have minor aches and pains and nausea here and there so no idea if its just from all my surgeries or if maybe this is caused from the gallstones? I am seeing a genereal surgeon/gastro surgeon in 2 weeks just to get an opinion. Surgery is last on my list..lol. Dr Remzi referred me to Dr Dietz at University Hospitals in Cleveland who in turned called me the next day to refer me to this other doc. I think if I ever need any intestinal surgeries I am switching to University with Dr Dietz since he comes HIGHLY regarded by Remzi. Dietz was at Cleveland Clinic for a long time and moved to University when they had the shakeup there. Remzi's head nurse and all his office staff went to University with Dietz now. I will stay with Dr Shen as my GI though, hes the best.

Have not read all the post in detail but my gallstones were discovered by accident.

This is years ago and nothing was done.

I have to avoid fats etc as the pouch throws out mucus.

I have always felt as if I still have ulcerative colitis.

Milk or milk products create a bubbling in the K pouch.

My diet now is veg especially root veg. This helps me absorb food and less pain.

I have had advice from alternative practitioners and this advice has been sound.

Yes I was told of the olive oil treatment.

My GP ignored me when I ask questioned. His answer was everyone has 

gallstones. No interest at all.

Patricia, 

I had my stones from about age 15 to past 50...I would get that nagging, 'knife in the back' pain between my shoulder blades then it would climb up towards my right shoulder ...I lived with it...I had a fantastic naturopath who treated me with charcoal tablets, to absorb the fats and acid and purify the gallbladder...my diet was freshly squeezed lemon juice every morning,  lots of steamed artichokes and asparagus, drink the cooking water (not recommended, I think, for people with kidney problems) and no fats or milk products ( K pouch excluded them anyway back then)...I did it for years...until I finally couldn't, the pain was a constant companion and I realized that my gallbladder was ruining my quality of life...but the treatment held off surgery for about 15 yrs...my tipping point is always the same, when things are more often worse than better, when the problem is controlling my life instead of the other way around...I give in and get it fixed. 

I tried to get my pouch surgeons to take it out during other surgeries but they always refused due to the risk of cross-contamination. Too bad, it could have saved me a few years of pain.

Sharon

P.S I forgot to add fresh pineapple...I ate kilos of it but due to my k pouch I use the chew and spit method...can't swallow the fibres...but I keep the diet up to this day...

Poucho: Yes, the MRI would indicate if the gallbladder was inflamed, and if a duct was blocked (your report states the opposite by indicating no dilation, which is what happens to a blocked duct). If you had a stone lodged in your common bile duct you would not be on the internet asking questions. You’d be in extreme pain, begging for surgery.

This can wait for your next follow up appointment.

Jan

so i finally got a response from Dr Shen regarding my situation and I am not sure how to interpret this? "we typically do not remove gallbladder for asymptomatic stones.(which i know)...In addition, patients with underlying IBD have a higher risk for postop complications from gallbladder surgery." 

ultrasound showed gallbladder completely full of stones and i know its not emergency type of surgery for me, but my guess it will need to come out at some point. should i ask Shen to elaborate on this?

I would ask him to elaborate.  It sounds serious to me.  Could he mean that the surgeon needs skills associated colonectomies or that the underlying disease will cause complications.

WHAT SOUNDS SERIOUS? gallbladder being full of stones??

Again, if it is not inflamed, if it isn't infected, if it isn't painful or causing problems you may not need to take it out...for now or for quite a while...There are alternative treatments to reduce them or clear out the gallbladder but they are disputable...some say they help (the treatment helped me not to need the surgery for over 15 yrs) but in the end, I was not as careful as I should have been with fats and ended up having it out....others say that the treatments do not help...but they are easy and worth a try.

Sharon

like what? THERE are 2 meds that they say can dissolve stones over years but Shen stated they are both ineffective. and I eat fatty food, but like I said what I eat doesn't cause the pain to be any worse.

I have heard of the meds but was never given any...I had a GP who was also a naturopath...She put me on a special diet...I had to drink a 'homemade lemonade' morning and night ( freshly squeezed lemon, a sweetener of your choice if you need it, hot water (in the morning before breakfast)  and if you like some mint leaves for flavour), It was also very pouch friendly and I have kept it up ever since. I took activated charcoal morning and night (tablets), ate a lot of artichokes, asparagus (and other green veggies like leeks) and drank the water from the cooking (apparently not a good idea if you have kidney stones according to one source), at a lot of fresh pineapple (chew and spit for k pouchers), and generally avoided red meats, fried foods, unhealthy fats (margarine and lard etc) and stuck to olive oil and other heathy oils and a little bit of butter...no cheeses.

That was it...it gave me 15 extra years.

You can also try to up your water intake and avoid coffee but I never gave it up.

Maybe it can help you...it doesn't hurt to try.

Sharon