Finally some relief from abdominal pain...

[DigitalMan]

Some of you may remember my posts about my wife having attacks of extremely bad upper abdominal pain that didn't get any better after gall bladder removal. Until a few months ago, nothing seemed to affect the pain. It just came and went, though it seemed to happen more frequently around 4-7 am. She has had every test you can think of and nothing shows the source of the pain. However, a few months ago her GI put her on a medication called "URSO 250" and since then her level of pain has been reduced. She still has the attacks of pain, but the highest they go is to around a 6 on a scale of 1-10, rather than all the way to 10. We haven't been to the ER since she started this medicine. This doesn't mean she is cured, but it has given her some relief and hopefully will be a clue to the doctors about the source of her pain. I guess this medicine can break up very small stones flowing through the bile ducts. One of the things it treats is Primary Biliary Cirrhosis, but apparently can help other things too. Not sure if she might have PBC or not. I found  some info on URSO 250 and PBC at http://pbcers.org/. Everyone here has been so helpful that I wanted to share something that I'm hoping could help someone else find relief from their pain.

In a follow up to this post I'll post the details about her condition that I have posted here so that you can see if this might match your symptoms.

Guy Kendall

[DigitalMan]

Massive Upper Abdominal Pain With No Other Symptoms Or Triggers

For two and a half years now my wife (now 34) has been having “attacks” of massive upper abdominal pain. We’ve seen so many doctors and had so many tests, but none have found the source of the pain. The pain is all around the front just under the ribcage and radiates around the back. It’s like an inch or two wide ring of pain. The pain comes and goes, but she usually has at least a minor attack every day. The attacks last from a few minutes to 17 hours. She describes the pain as “vice-like”, meaning it’s like someone is tightening a vice around her ribcage. Every few months the pain gets just terrible and we make a trip to the ER. She has given birth to our 3 children without any painkillers and says this pain gets way worse than childbirth. The strange part about hers, which seems to differ from lots of posts I have read, is that there are no other symptoms and no triggers that we can identify. The ONLY symptom is massive pain. There is no diarrhea or nausea most of the time (only twice ever, probably a coincidence). The attacks seem totally random as far as we can tell. They don’t appear to be caused by diet (hers is low fat anyway) or anything else we can identify. Eating does not seem to make it better or worse. Their occurrence does not seem to have any relation to the time of her period. She has not had any weight loss. She is frequently fatigued, but we don’t know if it’s related or just due to being the mother of 3 young kids and suffering through all this pain. She has chronic headaches, but don’t know if that would be related. The only pattern is that the attacks seem to occur most frequently at night between 3am and 7am. She has had tons of tests and they haven’t revealed the source of the pain.

The pain started while she was pregnant with our 3rd child and they thought it was just heartburn. A few weeks after delivery she had her first real bad attack and we took her to the ER (first of many trips). They said they saw gallstones, and that sure seemed like a likely cause for her symptoms so they took out her gall bladder. The pain continued. About 4 days after the gall bladder removal she had an attack with severe pain and nausea. We went back to the surgeon but he wasn’t concerned. Nothing seems to relieve the pain, however balling up in a fetal position with her knees down and her back up feels a little better than laying on her back or side when she is having pain. Also when they give her morphine in the ER, it seems to make the pain worse, not better. Since then we have had the following tests:

1) 2 ERCPs, one with a Sphincter Of Odimenometry. Both gave her pancreatitus (pancreatitis) and the pain felt exactly the same (however other times she has attacks the blood tests don’t show pancreatitus (pancreatitis)). Sphinter Of Odimenometry came back showing no problems, but the Dr. couldn’t get into the pancreatic duct to test the pressures so this is still a small possibility, but they said we should never do that again because it caused the pancreatitis
2) 2 upper and lower GI cat scans
3) MRI
4) Endoscopy
5) Colonoscopy
6) Abdominal ultrasound
7) Kidney ultrasound (showed a slight calcification, but Dr. didn’t think it’s the cause of the pain)
8) IVP
9) EKG
10) Blood tests (showed she was slightly anemic)
11) Urinalysis
12) Stool sample
13) 2 chest x-rays
14) Allergy testing
15) Anti-Nuclear Antibody (ANA) test with results of 1/640, which is abnormally high. We are seeing a Rhumatologist now to see if it could be a connective tissue disorder like Lupus, but he said pain this severe is not usually associated with those type of diseases. His further tests didn’t provide any definite diagnosis. One test for schleroderma came back slightly positive, but not enough to convince him she did have it.

Here is a list of medications and other things we’ve tried:
1) Demerol (does nothing for the pain)
2) Percoset
3) Antacids
4) Zantac / acid inhibitor
5) GI cocktails (pain got better one time after taking one, but other times it didn’t help)
6) Levsin
7) Carafate
8) Papaya Enzyme
9) Celebrex
10) Zoloft
11) Allegra
12) Neurontin
13) Some medicine for a spastic colon
14) Sleeping upright
15) Waking up to urinate before bladder fills to much
16) Morphine (we think it may make the pain worse)
17) Vioxx
18) Ativan (last time in the ER about 20 minutes after she took this, the pain got much better. She had also just taken a GI cocktail. We don’t know of either of these helped or it was a coincidence. We’ll try again next time in the ER.

Does anyone have any clues what this could be? Any suggestions on tests to ask for? Any suggestions on anything to try to relieve the pain?

Thanks very much for your help,
Guy Kendall (guy.***@****)

[Summer2002]

you didn't mention her liver,,,, any blood work for that?  any cat scan for it too to check if fat infiltration? I am going to think more about ANA and the sl positive test for scheroderm. If those are the only test positive,, you have to rule out what conditions these tests are positive for and then study the symptoms to see if match what your wife has. My mother has the same tests positive, the same type of pains,but she has diabetes, high cholesterol, triglicerides (triglycerides) and has the fat infiltration in her liver.

[Lynn28]

Here's a post regarding the same symptoms. I've seen posts like this a LOT from people with reflux (GERD) I sure hope your wife finds some help. University hospitals? Be sure to watch all those meds. Most may do more harm than good, especially if she has any GI disorders. Good Luck to you and your wife!


  

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Topic: Digestive Disorders: Scott Ketover, MD >> Discussion: Upper Abdominal Pain - like a vise grip by debcrocker (WebMD)

Upper Abdominal Pain - like a vise grip
by debcrocker (WebMD), on 9/2/2002 4:10:18 PM

I have been taking Prevacid for quite some time for acid reflux. Is it normal to have vise grip like pains around the upper portion of the abdomen (just below the chest area) that goes from the front to the back? Nothing seems to alleviate the pain, not prevacid, rolaids or tums, not drinking soda quickly to help me burp. The pain continues. Stomach bloating is quite evident when this occurs. It hurts to breathe deeply. I have had this pain constantly for 5 days now. It is better since the first 24 hours, but it is still there. It just isn't going away. Could this be gallbladder or something else?

[roxnsox]

I think there is an epidemic of unecessary gallbladder surgery in this country.  I have a co-worker that had hers out and she still has gastrointestinal problems.  She can barely eat any food now.  
   ANYWAY,  What did the abdominal scan show?  Does she have fatty infiltration of the liver?  This condition can exist in fairly young people who aren't overweight.  Is anyone in her family diabetic?  Did she ever have polycystic ovarian syndrome?

[Flowerchild59]

I don't see that she had a hida-scan to check for gall bladder function.  An ultrasound may not show stones but the hida scan would show ejection fraction and function of the gallbladder.

[Vailgal]

I had gall bladder surgery five years ago, followed a month later by passing a stone from my bile duct (worse than labor pain). The doctor then did a Sphincterotomy to open up my bile duct, but in the last couple of months I've started getting symptoms again. I had a Hidascan, which didn't show any blockage, but my Gastro doctor told me that wouldn't show whether there are stones hiding in the bile ducts. I am now having another ERCP tomorrow to try and figure out what is going on. With this procedure, they go down your esophagus and into your bile duct and look for stones, which they can remove right then if they see them. They can also look into your Pancreatic ducts to see if there are any lodged there. I agree with the person who said there are a lot of unnecessary gall bladder removals going on, I wish I had left mine in. If I eat anything with fat in it, I have severe diarrhea the next day, which I never had before. Anyone have any other ideas?

[5fan]

As a person who has suffered with pancreatitis (recently diagnosed as chronic), I have great sympathy for your wife.  

I have read that it is possible to have pancreatitis without elevated enzymes - NOT SURE IF I BELIEVE THIS OR NOT.  I have not had a chance to discuss this with my doctor yet, but I know that I still suffer from severe pain at times when my levels are "normal".  

Please let me know what you find out.  I'm very interested.

Best of luck!

[CarolynJ]

I have have had severe upper abdominal pain that lasted for hours.  The only medication that helped was Dicyclomine.  My Gastro Dr. said it was colon spasms. The pain was right under my rib cage.  Good luck.