Ongoing pain - no answers

[momcasey4]

Dear Doctor: I am writing due to extreme concern for my husband. He is a previously healthy, 41-year old white male, 5'11, 240 lbs. Recent history of high blood pressure (under control with lisinopril/hctz). In early April (2 months ago), he was experiencing severe stomach pain,belches that smelled acidic and very foul,  and then diarrhea after eating followed by blood in his stool. He went to our primary care doctor, who performed a digital exam, confirmed rectal bleeding and asked him to go to the hospital, which he did. The ER performed the same exam, again confirmed blood, and also did an ultrasound to rule out gallbladder (they said it was not his gallbladder) but that he has a fatty liver (he has never had an alcoholic beverage in his life) and elevated liver enzymes. He received a prescription for Protonix 40mg daily and was sent home. The next day, the severe pain attack came again, he again was told to go to the ER and did. The same things happened, only no new RX for a PPI. Our PCP sent him to a GI doc for upper scope and colonoscopy - both came back as normal findings and negative for H. pylori.  He was increased on the Protonix to 40mg BID and told that it was GERD. 2 months later he is still having ongoing, regular pain, diarrhea, foul belches and he has (unintentionally) lost 10 pounds in 14 days (documented by the doctor). The pain has greatly interfered with his quality of life - he has days where he cannot function and nights where he cannot sleep because of the pain. We went today (6/11/09) to a second GI doc for a second opinion. He basically told my husband that since the "gold standards" of endoscopy were performed with negative results, perhaps it has a "psychological basis". He grudgingly ordered a CAT scan "if it will put your mind at ease" and then said "maybe dropping a few pounds is a good idea". Can anyone PLEASE point us in the right direction?! A seemingly healthy person does not normally bleed (no hemorrhoids), have intense, crippling pain, diarrhea, and weight loss. There HAS to be an answer to his problem, we just cannot seem to find the correct doctor. He has already had to be taken to the hospital twice by ambulance (we have babies at home and I could not find anyone to help) and I am starting to become very scared for him. My online searches have led me to gallbladder (possible that an ultrasound might not pick it up), hernia, diverticulitis (which his father has and almost died from), celiac disease...the 2 GI specialists have both said that this is simple GERD. If it were simple reflux, being on a potent PPI should have taken care of the problem, right? If you could help point us in the right direction, we would be SO grateful.....no one seems to take what is happening to him seriously. What could this be, and what should we do next?

Thank you,
momcasey4

[angiepangie84]

has anyone ever concidered doing an o&p i think its parasites

[ggreg]

Dear Mom Casey,
Re-read both Reese and Coughting's posts again carefully.  They have excellent advice if it's in the small intestine, which the problems those posters describe will NOT show up on the scan or with the endocscope.  Forget about his liver, a fatty liver is okay to have, if it turns into serious stuff, the docs will describe it as another condition.  Consider going to an "internal medicine" physician, you can find a group in the phone book under that exact terminology, in the physician part of the yellow pages.  Those guys really know their stuff, and they can be in charge of referring you to other docs that are better than what you got.  If worse comes to terrible, travel to a university hospital ER next time.
GG

[momcasey4]

Thanks to all for the good info - his CT scan came back as normal. The second GI doc has basically signed off on us, telling us to go back to our PCP. 2 nights ago, we were back in the ER because of his severe pain and diarrhea. They suggested that it might be IBS. If it is IBS, shouldn't the GI doc still come up with a treatment plan for him? I asked him what, other than alcohol (because he's never had a drink in his life!) could cause the liver issue and what do we do next? No answers. What we are doing now is a process of elimination with diet. He is only eating BRAT foods and bland chicken, soups, etc. No caffeine, spices, fats. Keeping a journal with all food & drink entries. Then we'll start to addin foods 1 at a time. I guess if the doctors won't help us, we'll have to do it ourselves.

[wisern]

Causes of fatty liver other than alcohol are obesity and medications, especially pain medications and medications for cholesterol. A fatty liver does not necessarily indicate cirrhosis. If the fatty infiltration is accompanied by scarring, cirrhosis may develop. I think that problems withdigesting fat can contribute to a fatty liver. I have a fatty liver and feel that that is the cause of mine. It has gotten to the point that I cannot eat fat without severe pain. Tell your husband not to give up. It is not all in his head. Keep on trying. GI problems are so hard to diagnose. It could be problems with digestion of fats, gallbladder problems, pancreas problems, etc. The blood in his stool dos make it sound like it is intestinal. It seems like doctors just do not care enough to look anymore. They have certainly forgotten how to listen to the patient.

[coughting]

Where exactly is the pain.  I have chrons and had reflux.  My chrons is in remission now after bowel resection.  My chrons is in the small intestine and most scopes only go thru the large intestine.  The dr can go into the small intestine but most of the time is only looking for polyps in the large intestine.  There is a blood test for chrons genetic marker.  If you don't get answers soon, ask for this at least you will know if it is chrons.
My pain from the chrons was in the lower right side.  When it flared I would have flu like symptoms with chills.  
My reflux did not cause pain only terrible coughing especially at night.  Because there was no pain the dr's kept saying it wasn't that bad.  Take more ppi etc.  I coughed so hard and could not sleep that my blood pressure shot sky high.  I then told my gi dr that I could not live this way and insisted on tests for reflux.  It showed that I coughed when I had reflux.  I then went to the bariatric surgeon who did my bowel resection and he did a loose Nissen.  I did have a hernia which he also repaired.
At present all is well.

Insist that they find the source of the pain.  Ask for referrals.  If the GI dr. cannot find the source he should send you to someone else.  They all have their specialities and know who is good.   Best of luck

[ggreg]

Hey Mom Casey,
Just so you know, a fatty liver, while usually caused by alcohol use, there is a small percentage that get that from other stuff, like medicines for example.  Also, really glad you pushed for the CAT scan.  If they say it's okay, immediately have them forward the pictures and report to another physician.  And I also agree with one of the poster's thoughts on a possible small intestine problem.  Keep lobbying for your hubby... and it's okay if he has a little OJ and dark green salad and maybe milk, a bland diet for too long might goof up his nutrient levels.  Let us know how things turn out, we'll hope for the best.
GG

[momcasey4]

Hi - Hubby had a CT scan 2 days ago; we should know something (I hope) by tomorrow. He was up again all last night (me, too) with the pain, diarrhea, and foul acidic burping. He is religiously taking his Protonix and Donnatal, he also uses Mylanta Extra Strength and OTC Prilosec when he gets these attacks. I told him to get the Quack's home phone number so he call him at 3:30 AM when it is "all in his head":) BTW - has been a good boy with food, only bland carbs and chicken. Will let you guys know what is found.

[reese09]

The colonoscopy/endoscopy doesn't show what's going on in the small intestine.  The capsule endoscopy can.  It may be Crohn's, Colitis or something like that also.  Look on the forum under Crohn's.  There are some interesting posts.

[mammo]

Good luck to you!

[momcasey4]

Thanks for the good advice - will be taking your suggestion back to the docs. They told us that diverticulitis is not hereditary, but his father's was so bad that he almost died from blood loss. I am glad I found this site!

[mammo]

I would have him see an Endocrinologist, keep going until you get answers!  It does sound like he has acid reflux (my husband does also) but this would not explain the bleeding, pain or weight loss. It does sound like it could be diverticulitis, with the bleeding and pain. I'd kick that last so called doctor to the curb!  I've been thru the frustrations of incompetent doctors and it is so damn frustrating.  One's mind cannot create bleeding!  Prescription meds for my husband did no good, I got him on over the counter Prilosec and it has done the job.  If you end up taking him to the ER again, refuse to leave until you have answers.  Doctors will not refer you to someone who can help you, their egos are too big!  I was told this by a very prominent surgeon at the Cleveland Clinic.