What do I do now?

[brandee]

I am 28 years old.  This problem started after my gallbladder was removed. I still have RLQ pain, everyday, I thorw up or have diarrhea every time I eat.  This pain may be mild some days and only cause discomfort and the next week I may not be able to get out of bed for four days because the pain is unbearable.  This pain comes in like an attack where I am in the fetal position, seizurely clenched, and can't get up off of the bathroom floor.  I have been thorugh a work-up at Mayo Clinic in Rochester MN, and been seen by a GI at University Hospital in Iowa City.  I have had several colonoscopies, laperotomies, ultrasounds, catscans, blood and urine tests, been tested for Crohn's, my gallbladder has been removed, my appendix has also been removed. My liver function tests are always normal. I have taken every new drug for IBS and even an anti depressant for chronic pain.  I live on narcotics and even they do not help with the diarrhea.  I cannot make this pain go away no matter what I do.  I have a 3 year-old and I can't pick him up or carry him. I cannot do house work or even hold a job because I am either sick all of the time or in pain. My doctor has gone through this with me and is searching for something to help me somehow. He is open to new ideas and treatments but we seem to hit a dead end every where we go.  I would appreciate any advise you have for me.
Thank you,
Brandee Roberts

[LK]

Brandee,
I shivered as I read your posting. We have very similar symptoms. I had my GB out a few months ago and I now have awful pain. I read the posting of Concerned Lady, the nurse. She is on the right track and offered you very good info. What is important is that you be examined by an EXPERIENCED gastro specialist. I have been diagnosed with the Spincter of Oddi dysfunction and I can only tell you what has been working for me. I went to Indiannapolis to a physician who is suppose to be #1 in this field. I am trying different meds before I consider the ERCP. I have a young child as well and I can relate to how difficult the pain is in trying to get thru everyday. Please go see a Gastro specialist and keep asking all kinds of questions. This can be a very complex  medical situation  and it has taken me months of research to even begin understanding what is best to do. If you like, feel free to contact me at ***@****. I wish you the best and keep asking questions of your physician and if he can't give you answers find someone who will. LK

[Concerned lady]

My heart also goes out to you!

I used to be a nurse many years ago, so I looked in my old medical book, Harrison's "Principles of Internal Medicine" (1964)(page 1091 & 1092), and I looked at "Taber's Cyclopedic Medical Dictionary (1993): I found some possibilities you should ask your doctor about!!!:

Something called "BILIARY DYSKINESIA" can happen in "hyper-sensitive patients" when MORPHINE (one type of "opiate" narcotic pain killing drug ) causes PAINFUL SPASMS in the "duodenum" (first part of the small intestine, just beyond the stomach), and in the "SPHINCTER OF ODDI", which is at the opening of the "common bile duct into the duodenum at the papilla of Vater".

"In hypersensitive patients, OPIATES (LIKE MORPHINE, OPIUM, CODEINE, etc.) induce [cause] INTENSE NAUSEA, VOMITING, AND A VIOLENT CONTRACTION OF THE DUODENUM AND SPHINCTER OF ODDI with BILIARY COLIC [severe pain]".

"...BILIARY DYSKINESIA is CAUSED by CHOLINERGIC or ADRENERGIC IMBALANCE [Ask your doctor what this means, because I don't know for sure], by REFLEXES from other organs, and by a LOCALLY IRRITATIVE FOCUS, such as a CYSTIC DUCT REMNANT following CHOLECYSTECTOMY [surgical removal of the gallbladder!!] or the SCAR [adhesions??] of a SPONTANEOUS or OPERATIVE INJURY." (Get the records of your surgery, in case there might have been an "operative injury".)

The "pain, tenderness, nausea, and vomiting of BILIARY DYSKINESIA..." is said to be very similar to the pain that people have BEFORE their gallbladder is removed.

"The [biliary dyskinesia] patient, a woman nine times out of ten, USUALLY HAS HAD A STONELESS GALLBLADDER REMOVED" [that is, NO GALLSTONES were found in the gallbladder, when it was removed by surgery.]

Sometimes this condition can be caused by migraine headaches. "Neurogenic nausea is usally accompanied by considerable duodenal spasm."

The "TREATMENT of BILIARY DYSKINESIA is... (1) reassurance, (2) AVOIDANCE OF OPIATES [like MORPHINE, & CODEINE, & OPIUM, etc.] IN ALL FORMS [including COUGH MEDICINE, etc.], (3) ELIMINATION OF FATS AND ALCOHOL from the diet, and (4) a combination... of SEDATIVES (soothe & tranquilize) and ANTISPASMODICS (prevents or relieves spasms) to be taken at the VERY FIRST SIGN of the attack; e.g... ANTICHOLINERGICS, and barbiturates or phenothiazine derivatives...in combination [by mouth or by rectal suppository]...or by subcutaneous [shallow, just under skin, not deep] injection" once the attack "is well on its way".

Maybe, these days, there are SAFER medications, that don't have all the bad side effects of barbiturates & phenothiazine derivatives, etc. Ask your doctor and pharmacist about this.

ALSO, there is something called "POST-CHOLECYSTECTOMY SYNDROME", which means pain continues even AFTER the gallbladder has been removed. SOME CAUSES of this, can be:

(1) BILIARY DYSKINESIA (see above). With this condition, blood & urine tests may come out "normal", often making it look like it is all in the patient's head, when actually, it is a REAL, treatable condition.

(2) "Chronic relapsing pancreatitis". There are many possible causes of this INFLAMMATION OF THE PANCREAS, including "manipulation" of the pancreas [trauma] caused by INEXPERIENCED surgeons, during gallbladder surgery. This possibility must be thoroughly investigated, so that proper treatment can be immediately started, if you have this.

(3) "Organic abnormalities of the bile ducts such as stricture, fibrosis of the sphincter of Oddi, cystic duct stump, and tumors of nerve tissue. A cystic stump remaining after...[gallbladder removal] may enlarge and may serve as a site for new gallstone formation." [Ask your doctor to explain ALL this to you, since I'm not an expert at this.]

(4) If none of the above are the case in your situation, check into other conditions, both digestive, and others (like the previous person wrote about).

Also check on whether anything like a surgical "sponge", etc. might have been left inside, inadvertently.

While working on getting properly diagnosed, consider seeing a good acupuncturist at some time.

Once you are feeling better, AFTER proper diagnosis and treatment, (or even now), ask your doctor about taking acidophilus/bifidus beneficial bacteria ("probiotics"), especially if you have been taking antibiotics, and ask about taking digestive enzymes, including the enzyme "lactase" (in case you have lactose/milk sugar intolerance).

Also ask your doctor to check on "celiac disease" (a "gluten" intolerance), possible intestinal infections, and food allergies, etc.

I hope this helps. I hope you feel better and get better soon! I hope some experts can advise you also, in this forum!

Sincerely,
A Concerned lady  
***@****

[valc]

I have been going through similar problems.  The only thing I have not heard you mention that I am having done is an ERCP.  This is an invasive diagnostic test that can detect what other tests could possibly miss.  I too have had all the other tests that have come back negative, but I am still having the symptoms. Ask your GI doctor about this procedure and see if that is an option for you.

[Wilson]

Hi, sorry you're having such problems. So you've had a colonoscopy, abdominal CT scans, upper GI w/small bowel follow-thru, and they're all completely normal? How 'bout an upper GI with enteroclysis? - where they feed you the barium and methylcellulose through a tube that goes past your stomach so that the acid doesn't act on it...this is supposedly more sensitive for detecting Crohn's disease. Have you had a Sed rate blood test? I think that's sometimes a marker for inflammation.  Have you looked into other, non GI-related possibilities, for example reproductive stuff? I think maybe your pain alone could cause your GI symptoms.
I'm not a doctor, but I could share with you what little I do know from my own medical saga, and I do have alot of questions for you. Email if you want: ***@****

Good luck to you, and I truly hope you get to the bottom of what's causing your symptoms soon.

[MARY ANN]

it sadens my heart to hear the pain that you are in ,the only thing i can say is keep your faith and continue t o serch for the answer . i wished i had the answer . may god bless you with a diagnoses and a solution to your health  problem . gods speed.