all out of solutions

[nomeg222]

My husband has complained of chronic abdominal pain for Almost two years now. He had his gallbladder removed  in June 2002 .  The Doctors thought it  was the root of the pain.  This was not the case, the pain continued, he then had a multitude of GI test done with little to no findings.  The test include barium swallow (2x) upper endoscopies (2x) colonoscopy, MRI of head, neck &abdomen, X-ray of chest & abdomen, 2 cardiac stress test, cat scans, ultra sounds of neck chest & abdomen, manometry & a 24 hr probe( both showing no reflux or spasms).  However there was a finding of h pylori and peptic ulcer, this was  treated with biaxin and nexium the pain continued after the treatment. Doctors have yet  to pin point the source of this pain although it's getting  increasingly worst. We're really at our wits end in  trying to figure this all out.  It's frustrating going to the doctor and not finding anything out.
The pain start in the middle of his upper stomach to which it can be described as  a constant throbbing or spasms.  The throbbing then radiates to his lower back , sever headaches and a heavy feeling in his chest. Once the pain gets to this level  (which is quite often) we'd go the emergency room.  They usually give him a pain medication  like Demerol  which works ok.  Other pain medications taken orally do not work  as  the nausea and constipation side effects are just as bad as the pain not to mention the dangers of long time use can cause a host of other problems.  He has since seen a pain management Dr. who has  prescribed several medications  such as the duragesic patch where again the nausea was unbearable.and  a spasmodic drug (tazidine), here yet again the side effects were intolerable.  

He's in such pain everyday that his productivity is very low.  He's been out of work for most of the year due to this illness. We're now looking into alternative treatment as most  doctor feel like he's exhausted all options.  Moreover,  he's just tired of taking medications that make him feel worst. Please advise what he should do at this  point.  We are contemplating constipation problems now due to small bowel movements on some occasions giving slight relief.  initially the problem was shortness of breath after eating some spicy rice and a nutriment w/no stomach pains.  He was diagnosed w/gerd reflux.  He has taken multiple drugs for so many conditions to no avail.  It's been down hill ever since.

[Kevin Pho, MD]

Hello - thanks for asking your question.

Please note that without examining your husband, it is impossible to say what is going on.  There has clearly been a comprehensive evaluation including barium swallow (2x), upper endoscopies (2x), colonoscopy, MRI of head, neck & abdomen, X-ray of chest & abdomen, 2 cardiac stress tests, cat scans, ultra sounds of neck chest & abdomen, manometry & a 24 hr probe.  That pretty much runs the gamut of tests we have.  It will be unlikely that I can come up with something your physicians haven't.  

I agree with the comments below that Sphincter of Oddi dysfunction is one of the few things that have not been excluded.  Sphincter of Oddi dysfunction (SOD) is suspected in patients who have biliary-type pain without other apparent causes. In this setting, SOD is most commonly recognized in patients who have undergone cholecystectomy.  The reasons for this are not well understood, but may be related to unmasking of preexisting SOD due to removal of the gallbladder.

To start with, I would consider non-invasive testing such as fatty meal ultrasonography or hepatobiliary scintigraphy.  If either of those tests are positive, then the next step would be the ERCP with Sphincter of Oddi manometry to evaluate for dysfunction.  I would discuss these options with your personal physician.  

SOD can be treated with medications (calcium channel blockers or nitrates), endoscopic therapy or surgery.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[nadia]

Sorry to hear about your husbands problems.  His story is amazingly similar to mine.  I am 40/f and have been having chronic pain behind my sternum for over 2 years now.  I had my gallbladder removed in June 2002 and didn't get any resolution to the pain.  I had no stones just chronic inflammation.  I have had endoscopies,barium studies, a ct scan last year, colonoscopy, x-rays, ekgs, stress tests, bloodwork, and ultrasounds.  I have not been able to work since last March.  The pain is absolutely at it's worst in the early morning hours along with palpitations. When I get up it feels like the entire area from my sternum around my ribcage and into my back feels sore and bruised.  I also have a heavy feeling in my chest.  At it's worst I feel deathly ill and can't believe the doctors don't know what is wrong.  
  You may want to look into sphincter of oddi dysfunction.
The doctors look at me like I'm not telling the truth when I try to explain how painful this is. They start to blame it on anxiety because they really don't have the expertise to diagnose this problem.  I really hope your husband gets some answers, I will look forward to hearing the doctors response to your question.

[nomeg222]

Hi Nadia -Thanks for responding. Have you found any relief for your pain? Did you have the sphincter of oddi test done? My husband did have slight amylase and lipase elevations. His bilirubin levels normally range between 2.0 & 2.9 over the last year and a half.  The doctors think they are too low to have a risky procedure like an ercp done. Do you suffer with constipation as well or do your test show any stool in your large/small intestine? We are following up with this due to chronic hard stool bowel movements. Did you get diagnosed with gerd reflux or pancreatitis?  He was taking clonazepam for about a year (1.0 - 2.0 mg per day). This helped a little with the spasms in his abdomen, but not for long. I too look forward to a doctors response.  Thanks again for responding.

[nadia]

Hi,
The doctors refuse to give me anything for pain.  They do not perscribe anything for fear of addiction.  I have no history of addiction problems, but that doesn't seem to matter to them.  It has been hell at times.  I have also taken clonazepam, it is an anxiety med that was perscribed at the onset.
  I have not had an ercp, but I have yet to see another GI doc. who specializes in this procedure. I have alternating bowel movements and am just now developing the dumping syndrome(common after gallbladder removal) I drink olive oil(2tbsp) to stay regular when I have severe constipation.
  When was your husband's last CT scan?  I have been told that things don't always show up right away, that is why I am having another one now a year later. If his amylase and lipase were elevated, it does sound like his pancreas could be affected. I have been told through this message board that in chronic pancreatits, those levels may not always be obvious and other tests may need to be done.
  From what I have been told by doctors here, Sphincter of Oddi dysfunction doesn't typically manifest as chronic pain.  I would be interested to know if he experiences episodes where he feels very ill and extremely weak?

[nadia]

In response to your other question about GERD, I was diagnosed with this some time ago as well as chronic gastritis and hiatus hernia, however the doctors do not feel this is the cause of my pain.  My area of pain is right around the pancreas and it seems to me to be the source, I suppose the CT will confirm one way or the other. My amylase and lipase are not elevated, so pancreatitis has not been suggested.

[schaeff]

As has been suggested here, persistent upper abdominal pain following gall bladder removal that is not explained by a rigorous GI workup should suggest sphincter of oddi dysfunction for consideration.

You may wish to read or browse this article and see if what it describes sounds consistent with what your husband is experiencing:

http://www.joplink.net/prev/200111/04.html

Best of luck.

[shell416]

hi nadia, I'm new to the board, but read it often as I am too trying to figure out the cause of this pain I've been having (after laparoscopic cholecystectomy in April 2003).  Alot of my symptoms mirror what you've been posting about on this thread.  I didn't have stones or sludge either, but was told by the surgeon the gallbladder had adhesions possibly from being inflamed in the past (now I'm wondering if the gallbladder was even to blame for my prior symptoms, because I actually feel worse now than before my surgery).  I'm a 43 yr. old female in otherwise good health and not overweight.  I do have gerd and small hiatal hernia, but have been on and off prilosec, nexium, etc. for years (currently on nexium 40mg/day which takes care of the acid).  I've had an endoscopy and a colonoscopy, both negative in the past year.  This pain started about 2 weeks after surgery right under sternum and to my left upper quadrant, that, how I would describe it, would bore through to my back.  Thought it might be related to food because I had eaten a small piece of cheesecake and pain was bad enough to send me to the emerg. room.  Liver and pancreas enzymes not elevated, and cardiac enzymes and ekg normal.  Went back to surgeon, and he re-did bloodwork--all normal so was sent to GI specialist (who by the way specializes in sod and performs ercp's) and he ordered a abdominal/pelvic ct scan which came back normal.  He told me it was irritable bowel and to stay on elavil (which I was already on but to bump the dose up to 25mg./day) and to exercise and just don't think about the pain.  Well I'm still feeling miserable, I lost about 13 lbs. because not eating normal--I kind of put myself on a semi-bland diet, thinking certain foods might make it worse.  This pain in my sternum and back really freaks me out, my ribcage and really everything on my left side is very sore.  I lay with the heating pad at night on my back--helps a little.  Usually wouldn't get the pain in the morning, but now I am, and I'm also getting the heart palpitations--as you mentioned (skipped beats, which I know are a vicious circle when you get one it makes you even more anxious).  And I've had the horrible bouts of weakness, I can't explain, but getting very depressed with the chronic pain, and not knowing what's wrong with me.  Sorry to go on so long, but your situation sounded very similar to mine.

[nadia]

Hi,

  We do seem to be living with similar situations.  You mentioned seeing a G.I. specialist who deals with ERCP's, did he not consider SOD?  I had seen one G.I. doc who did not think my problem was SOD, but I am going for another opinion. A CT scan doesn't usually confirm this problem unless it shows a problem with your ducts, such as dilation. Even then it would be necessary to proceed with the ERCP.
  I also took elavil for pain 1.5 years ago.  Unfortunately, I experienced a racing heart (tachycardia) and have not been the same since.  I refuse to take it anymore. It didn't do much for the pain anyway.
  Keep us posted if you make any progress. I would be interested to hear if you are making any improvements.

[shell416]

nadia, thanks for the reply.  When I asked that particular GI doctor whether I could be having a spasm of the sphincter or pressure in the bile duct, he said he didn't think that's what it was and really didn't give me much of an explanation.  Just "give everything a chance to heal" and "irritable bowel syndrome".  I'll probably go get a second opinion, I know my body, and I know somethings not right since my surgery.  It's hard to function every day with chronic pain and not know what's really causing it.  I hope you get to the bottom of your problem.  I'll look for your future posts.

[nadia]

I know how debilitating this pain can be and the insensitivity of some doctors who think you should look past the pain.  It's important to stay mentally strong and keep searching for some answers, no matter if they try to discourage you from doing so. The problems arising from this type of illness can surpass the illness itself, especially when it drags on for years without resolution.