Surgery yes or no?

[stressedparent]

My Daughter is 11 for the past 3 years she has had severe abdominal pain, 2 inches above the navel and severe nausea, , had frequent passing of gas both ends and some reflux .  She always says it is if someone has taken a rope and is wrapping it around her stomach as hard as they can.  We have had a **** load of test done.  Upper/Lower GI, scoped both ends 3 times, motility testing, gastric empting, labs, labs, & more labs.  We have had X-ray, CT scan, ultrasound you name it, 2 hidascans with the injection.  The first hidascan last year spit out 26% last week it spit out 7%.  This all started 3 years ago after a severe viral infection that lasted a week.  She has a lot of nausea, no vomiting, no diarrhea or constipation.  She has always had extreamly large fat bulky stools.  Her x-rays don't show her to be backed up.  She also sweats really bad at night, however the test for TB and CF have been normal.  She is tired and in pain.  Now they say it is biliary dyskensia?  They want to remove her gallbladder, however could'nt I fix this issue with a proper diet instead or is there more to this diagnosis?  If the gallbladder is removed what are the odds that the liver will become damaged later on, due to her being a young age?  


This discussion is related to Is Surgery the Answer?.

[CalGal]

It's a bit difficult to list the pro's and con's about this problem. If you look at the anatomy of the liver, the gallbladder and the pancreas it might make it easier to understand what is going on, or what could happen.

Take a look at figure 3 on this page: http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease5&organ=3&disease=12&lang_id=1

Do you see the common hepatic duct? That's where the bile is coming from the liver as it moves toward the common bile duct and it's outlet at the duodenum. That opening - the sphincter of Oddi - is muscular and it's fairly decently regulated, although there is a trickle of bile that 'leaks.' But this opening allows the bile to 'back up' and fill the gallbladder - so it's kind of a backflow system.

When food is in the stomach and exits, there's a chemical signal (CCK) that triggers the contraction of the gallbladder and the opening of the sphincter of Oddi, allowing the release into the duodenum of the bile (and the ‘juices’ from the pancreas) which will mix with the fats from the stomach..

Now, do you see the pancreas and the duct from the pancreas to the common bile duct? That juncture where the pancreas and the common bile duct meet can have several configurations. IF the sphincter spasms or IF the configuration is blocked in some way, the flow of bile (and pancreatic fluids) can ‘back flow’ into the pancreatic duct. It can also result in a back up of fluids up the length of the common bile duct restricting flow from the liver into the common bile duct.

So you need coordination and the correct ‘working pattern’ in the whole of the system to make sure the bile and the pancreatic juices flow from their respective organs into the duodenum for use.

If bile backs up it can back up all the way into the liver - causing problems all along the way. If the pancreatic juices back up they can re-enter the pancreas and wreck havoc there. These problems can result in liver damage and/or pancreatic damage.

For whatever reason if the gallbladder has a problem it can affect the whole of the biliary system in some people.
(1) The common bile duct can spasm retarding bile flow. Since some bile helps ‘spur’ the movement of the large intestine, lack of bile can mean ‘whitish’ fecal material and constipation.
(2) The sphincter of Oddi can spasm retarding and then massively releasing bile and/or pancreatic juice flow.
(3) If the gallbladder produces sludge (small, small microcrystals of precipitating cholesterol, the crystals can irritate the cystic duct and the common bile duct and that can result in spasms - and other problems.
(4) If the sphincter has problems and stays open it can allow the reflux of duodenal contents into the common bile duct which can initiate an inflammatory process. An open sphincter will also result in constant leakage of bile into the duodenum. Bile is an intestinal irritant. Constant output results in diarrhea.

A confounding problem is that it’s difficult to know when to remove the GB and when to try to work around the problem. It seems that more and more people without the presence of stones - but just a low ejection- fraction end up with postsurgical problems. But there’s no way to tell who will or who won’t have problems.

If surgery is done, a decent thing to try is to stay on a low fat diet for months to a year after surgery to try to allow the system to adjust to being without a gallbladder, and then slowly adding fats back.

Stressedparent, I tried to make a pro’s and con’s list, but it just didn’t work out. I don’t know if what I’ve put down will be of any help, but it’s the best I could come up with.

[CalGal]

It's a bit difficult to list the pro's and con's about this problem. I'd like to think about it and will get back to you with as coherent an answer as I can.

[ccantu08]

Hi, I am 21 years old I was 19 when I had my gallbladder removed and I wish that I knew that I had a choice to remove it or to keep it. I have been doing some research on before and after. And sometimes the after effects are just as bad as before removal. I still have pain 1 year and 7months after. I have diareah shortly after I eat and sometimes the cramps and nosia are so saver that I feel like I am going to pass out right on the toilet. So please do some research before you deside.I feel bad that your daughter has to go through this at such a young age. I would ask your Dr. about some gallbladder flushes maybe she can use them just in smaller doses since she is so young.

My prayers are with you and your daughter I wish you the best

Carmen

[stressedparent]

Thank you, I sincerley hope that your daughter will find some relief soon.  Its nice to know that someone else can relate, however it is not nice to know that someone else is suffering to relate to you.  Best of luck and prayers for your little one.   My advice is research to no end before you let any medical procedures be done.  We have to make sure it is in our children's best interest before we allow anything to happen to them.  Get a 1000 more opinions if you have to, follow your instincts and gut as a Mother.  Keep me posted!  Thanks!

[stressedparent]

Thank you for the info.  I really need to bury my head in the pros and cons of this surgery.  I belive that every part of our body, in and out are no doubt there for very good reason rather it be the heart or tonsils.  I worry about the risk involved and how this will affect her liver and such in the future.  Please let me know of some of the pros and cons if you wouldn't mind.  Thanks!!

[Robyn26]

Hi.  I just wanted to let you know that you are not alone.  I am a parent of a 12 1/2 year old daughter - how has been dealing with constant pain with spikes of acute pain since Oct. 2007.  She did have her gallbladder removed June 2007.   From June 2007 to Oct. 2007 she was recovering from having non-infectious hepatits twice.  At the end of Oct. 2007 she had such an acute attack pain she was admitted back into the hospital.  After having series of test that you mentioned above, she finally had a ERCP done.  During this procedure, a stone fragment was located in the common bile duct.  A small cut was made and the stone fragment was removed.   Ever since then, she has been in constant pain.  She had a MRCP/MRI done several days ago and we were informed that she has a congential disorder, pancreas divisum.  This congential disorder is found in 7% of the population with no symptoms.  Out of this 7%, 1% will have extreme abdominal pain with no increase enzymes of the pancreas but will still have pancreatitis.  Because of her age, we and the doctors are trying our best to keep from having a stent place in her pancreas.  However, as I respone to your posting - she has been readmitted 3 days ago with extreme pain and no able to keep any solid or clear liquids down.  Over this past year, she has been admitted to our local children's hospital 4 times with the average stay lasting from 15 to 20 days.  Pancreas divisum was diagnosised at a Indiana University Hospital.   It took 11 months for this diagnosis and we had to travel to a University Hospital.  She was placed on pancreatic medication but because she can not eat solid food - she can not take this medication.  So here we sit trying to control her pain.

It is very frustrating to go through this.  Seeing your daughter is so much pain, knowing that this is a reason for this, and not being able to take control is very overwhelming.

Please know that you are not alone.  I am not sure if my posting will assist you medically; however, I am hoping that my posting will bring you comfort knowing that you and your daughter are not alone.

[CalGal]

From what you're saying, it's possible that the problem may be biliary in nature especially if she now has a 7% EF. Unfortunately, I do not believe there is anything you may be able to do at this point to try to change that factor. It appears that once the gallbladder's muscular functioning declines it does not recover as far too many people - adults and children alike - find out.

I would like to make a couple of suggestions if you don't mind. In my experience, it appears that the tests that are done to evaluate the functioning of the gallbladder are not what I would consider the 'do all and end all,' but they are the best we have at this time and we have to rely on them. However, far too often people (in my opinion) seem to end up with a low functioning gallbladder and while the testing is going on 'sludge' (a 'thickening' of the bile in the gallbladder/presence of small crystals within that bile) is not seen on the ultrasound. It may only be after surgery that a patient is told 'oh, you had sludge.'

There's a problem when someone has sludge - those small crystals could cause irritation to the common bile duct and the muscular opening to the duodenum: the sphincter of Oddi. Before or during the surgery it's possible that some of those crystals or small stones can be 'lost' into the common bile duct, and that can cause problems.

I'd like to suggest that if you decide to go ahead with the sugery, that you ask the doc to 'sweep the ducts' at the time the surgery is done to make sure that any stones/sludge already present or anything that might have escaped get 'swept' out.

I'm suggesting that because of your reference to larger than normal, fatty/bulky stools. Those stools could indicate that she's already had some irritation to the sphincter and that has resulted in a backup of the functioning of the pancreas which is found in some in some cases when the GB malfunctions. Please understand that I'm only speculating about her stools and only her doctor can tell you for certain whether that is indeed happening, but it's something I would bring up with her doctor.

If that is the case, it's something that has to be remedied as retarding the flow of bile and pancreatic fluids could damage the pancreas.

If you do elect to move ahead with the surgery, I'd also like to suggest that you closely monitor her fat intake after the surgery and keep it very low fat for quite awhile to allow her system to adjust. Many people find they have problems handling fatty foods after the surgery and it may take some time for that to change.