Severe Stomache cramps for 5 yearswith no diagnosis

[bvanhethof]

Aprox. five years ago, my now 31 year old husband, starting getting unexplained stomach cramps. The cramps are so severe that even the elastic from his boxer shorts bothers him. He gets some relief from burping and is very nauseas. He does not have heartburn, he has no burning pain or anything associated with Acid Reflux or Hital Hernia. There is no real triggers for the pain, it happens all times of the day and comes all of the sudden. The stomach attacks come every 3-4 weeks and sometimes even twice a week sometimes. He is in so much pain; the pain seems to be centered in his mid-abdomen. No bloody stools or diarrhea either. He has been given Nexium, which he takes everyday for 6 months now. He quit smoking 6 months ago and even changed his diet, tries to eat less fatty, fried foods. But nothing has changed; he continues to get severe stomach pain. I am worried because his grandfather died of Stomach cancer at age 35. He has had an Upper GI, an ultrasound, and even Barium but everything seems to be okay. They found a slight hital hernia, but nothing else. I know that this hital hernia can not possibly be causing him so much pain. Can you shed some light on this issue, should we be asking for cancer test, or what about Crohn’s?  He also takes Buscopam (muscle relaxer) occasionally for pain…..but that does not help the pain very often. I feel so bad for him and I am so worried, he stays up all night with the pain and it makes him so weak. He will run to the bathroom constantly thinking he has to vomit, but nothing happens. Please help

[Kevin Pho, MD]

You mentioned having an upper GI, ultrasound and barium test.  Did he have an upper endscopy?  This would be the most comprehensive test for evaluation, and I would suggest this if it hasn't been performed.  

There are a variety of upper GI disorders such as inflammation of the esophagus or stomach, H Pylori, ulcers or masses that could be causing the symptoms.  GERD is also a possibility.  

If the endoscopy is negative, I would suggest a 24-hr pH study to evaluate for GERD, or perhaps a HIDA scan with CCK stimulation to evaluate the contractions of the gall bladder.  

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.

[silverstanger]

Maybe a colonoscopy or a barium enema could reveal something..

[keri2400]

This is a long post, but I thought I would give you the entire story, to save your husband some time and pain.  I had my gall bladder removed 3 1/2 months ago due to pain in the upper right quadron of my stomach.  After the surgery, I continued to have pain.  My doctor said I was one of the few who needed to have an ERCP with sphincterotomy performed on my common bile duct.  

Before the gall bladder was removed, I had an ultrasound which showed no stones, but my gall bladder was a little inflamed.  They then did a hidascan, which showed my gall bladder was not working properly.  The doctor later explained to me that if my sphincter of oddi (common bile duct muscle) was spasming, it would cause my gall bladder to not work properly.  But, if the sphincterotomy via ERCP had been performed before the gall bladder removal, the gall bladder would be functioning properly.  Because of the risk of pancreatitis with an ERCP, they go for the gall bladder first.  

The pain can occur throughout the day off and on.  Sometimes it was more intense than other times.  I refer to these as the "little pains".  About once a week a "big pain" would wake me up around 4:00 a.m. and hurt so bad I couldn't walk.  The pain goes away after several hours.  The pain stops just like someone flipped a switch.  This concurred with my doctor's diagnosis of the sphincter muscle in my common bile duct spasming and getting tighter and tighter and then all of a sudden releasing and the pain going away.  I could put a Levsin under my tongue (for smooth muscle spasms) and the pain would go away more quickly.

So, I went to have the ERCP, which has a risk of pancreatitis.  I got the pancreatitis, was in the hospital for a week. About a month later, I started having "the big pain" on a weekly basis again.  I went back to the surgeon's office, who said it could be a spasm in my pancreatic duct.  He could have cut both the common bile duct and the pancreatic duct, but usually the problem is solved with the sphincterotomy of the common bile duct.  

Since I had pancreatitis after the last ERCP, he really wants to avoid doing another ERCP.  He said there is a 99.99% chance of me getting pancreatitis again with another ERCP.  There is a risk of death with pancreatitis.  We have tried Levbid (twice a day), but I still had small pains throughout the week.  We are now trying Bentyl, which I can take four times a day.  I haven't had the "big pain" again, but I have started to have the little pains again.  

Sometimes I got very nauseous with the pains, where I would run to the bathroom to vomit, but nothing would come up.  Also, when I over exert myself, I will get the pain and I feel very nauseous.  Sometimes the pain is in the upper right quadron (about two inches above my belly button and one inch to the right and sometimes it is in the center of my stomach just below my breast bone.  

When all of this started, I went to my primary care physician.  I then started to see my general surgeon after he removed my gall bladder who diagnosed the sphincter of oddi dysfunction.  I went back to my primary care physician to make sure he agreed with the surgeon and he did 100%.   My general surgeon sent me to a gastroenterologist to have the ERCP performed (two hours away).  He is the best in the area and this is all he does.  When the pain started again, I went back to my primary care physician who said maybe I have Irritable Bowel Syndrome.  I dealt with that for a while, but then demanded to be referred somewhere else.  My physician gave me many options and I decided to see the gastreneterologist who performed my ERCP before.  He has been great.  

From my research online, I have learned that some people have elevated blood levels (liver function and amalyse), which I have never had elevated blood levels, but I have not gotten my bloodwork done until 6-12 hours after the pain.  One place I read the lady's blood levels go back to normal after 6 hours.  Now I have a slip from my gastroenterologist to get my blood levels checked as soon as the "big pain" starts, which I have not had the "big pain" since the doctor gave me the slip.

We continue on the road to recovery, quite possibly an actual diagnosis that sticks.  If anyone has any questions or suggestions, please e-mail me at ***@****

[keri2400]

Also, I have been tested for Crohn's, which I do not have.

[ozark]

have any of you been tested for wheat allergy or food allergies?

[bvanhethof]

Dear Ozark

Yes, no food allergies

[eapleta]

I would ask to check for pancreatitis. Blood work for amylase and lipase (during a pain attack) and CT scan for starters.

[sunny_one]

Has your husband been tested for intestinal parasites? It's often overlooked in the US, but can be a problem for those who are symptomatic. You must have very specific testing from a reliable lab - often more than once to detect them. I have just found out I have Dientameba fragilis - an intestinal parasite. I have been through a year of hell without proper diagnosis. I encourage all who have ongoing gastro problems to be aware of this. This site has a lot of info about these critters: http://www.badbugs.org/

[krisg]

Hi, I have been through the same exact things as you have.  From the gallbladder surgery 5 years ago to my most recent ERCP.  I also had a biliary sphincterotomy in feb. 03.  I still have ongoing symptoms.  I was told to only have MRCP's because of getting pancreatitis after the ERCP's.  I just recently had 2 MRCP's each a month apart, because the x-rays showed a stone in my bile duct.  I then had another ERCP to remove the stone and the dr. told me there was no stone when I woke up.  I feel like I'm being viewed as the "woman who cried wolf".  Sometimes when I have the "big attacks" my liver enzymes go up.  Sometimes my bloodwork is all normal.  I was also told that my pancreatic sphincter could be the problem.  Only another ERCP with manometry would be a definite diagnoses for that.  I have about had it with the whole mess.  I have a really good dr. at a University hospital but I think he is now leaning towards the "old reliable" diagnoses of IBS.  I was given that diagnoses before (for the last 5 years).  I am sick of hearing it.  My bowels are fine.  I just wish someone could give me an accurate diagnoses and work towards a cure or at least going 6 months without an attack.  That would be nice.  I can defintely relate!!!!

[charchar]

hi, i have a daughter with the exact same symptoms she had her gallbladder out when she was 14 and still had the stomach attacks so they took out her appendix 5 mos later and she still has her attacks well i called the dallas childrens hospital and asked for a gastro. and they put her on a waiting list and said it would be aproximatly 7 mos. she still has them ...and been through every test imaginable and still no answer. We make frequent trips to the ER. And they just put her out of pain until the next one comes along. Its very frustrating. She is now 16 will be 17 next month and she is very tiny 98lbs. And i hate to see her in pain but i don't know where else to turn. so she tries to deal with it until it gets so bad then we take her to the hospital..Maybe oneday we will find a DR. that can help.

[Lexi4]

I can't believe I'm reading about all the same symptoms I have, the only difference I could see was that I have had rectal bleeding.   I can honestly say having had 4 children that the pain in the abdomin (abdomen) is worse than labour (and I had no epidurals).  The doctors have been saying Crohns disease but I haven't been told anything officially.  Please just make sure you don't stop pushing for answers because it is a painful and some days a nuisance of a life to lead.

[krisg]

I agree,  I agree !!!  see the response that BIGMAL got from surgeon on another post about gallstones.  I had 2 MRCP's that said I had a stone in the bile duct. Had my gallbladder out 5 years ago.  I went and had an ERCP and they found nothing !  The dr. looked at me and said he thought maybe IBS.  Geeeeese!
I sure wish some dr.'s would take a good look at the patient during the actual attack.  That is my next stategy.  I think I will have the ER call the dr. out of bed and watch me go through the attack (next time) and then maybe they will get the hint!!!  And finally put the good old diagnose of IBS to rest.  It seems they sure believe a man when in pain put seem to question a woman.  I also believe that the attacks I get are worse than my labor too. I have had 2 children.

[Gastro_interest]

Okay, you've read a lot of gallbladder stories, now I'll share a different perspective on this.  
I had the exact same symptoms and tests as your husband.  All tests came back with nothing wrong.  I was on Nexium for about a year, but it didn't help.  I finally saw a gastroenterologist and was diagnosed with Gastroparesis.  This is where your stomach does not function well.  Food will just sit there, which causes horrible cramping.  I also have CIP (Chronic Intestinal Pseudo-Obstruction), which is the same problem as the stomach, but further down the line in my intestines.  
Your husband might want to talk to his doctor about getting the GES (Gastric Emptying Study).  This is an easy test where you eat something (usually a sandwich) that has radioactive isotopes in it, and you lay on a table for an hour and a half or so while they take readings.  If the food is slow to leave your stomach, you have Gastroparesis.  It's a totally easy and non-invasive test.  
This condition is not one many doctors readily think of, but many people have it.  I'm on a support group on Yahoo for it, with about 2,000 memebers.
Good luck to you and your husband!

[shelly4kids]

I just read all of these posts and am just stunned. So many of us suffering with basically the same symptoms and getting totally bogus diagnosis! I to had my gall bladder out in Dec. 2001 and have been having problems and frequent hospital visits, my last just Dec 2003! I have severe upper stomach (chest pain) which has been brushed off as the following::: IBS, Gerd, Gastritis< Hiatal Hernia, Nerves..LOL! sure), panceitis and obstruction of a duct are the 2 newest diagnosis in which lie


lying there in pain my husband and I finally thought we were getting somewhere only 4 days later when my blood tests were normal again they release me!! My pacreas and liver panels were off the charts, and my insulin too. Saying due to some sort of blockage they said and did nothing about!! 13 emergency room visits in the past 2 years and a wacky doctor whom we finally left and will be seeing a new one soon. I am a 34 year old mother of 4 beautiful sons, one autistic and I plead with these so called medical people to help us to avail. I have such bad pain it radiates to my back and i can barely lean over in agony. It has become more freqent in the past months and i have changed my diet, havent had a cigarette or a drink in over 2 years PTL! I dont strain myself or anything and still this problem. I will hopefully be going to The mayo clinic soon and they can shed some light on this. I just continue to pray to the Lord for a miracle for me and my son. God bless you all, I know how hard it is to suffer with this. If anyone else can shed some light please do..

[krisg]

It is amazing that alot of people complain of these "attacks" and they are brushed off as IBS, acid reflux, etc.  I am finally (I think) coming to a diagnoses of what is happening to me during these attacks.  I somehow landed in good hands of a family physician who knows alot about biliary stones, etc.  He believes that I am forming small stones (approx. 3 mm) and then passing them in approx. 4-5 weeks.  Then another one will form in the bile duct about 1-2 months later and give me periodic attacks for about 4-5 weeks again. Yes, the pain is awful during the attacks; severe pain behind the breast bone, LUQ pain, RUQ pain, can't move much, back pain, chills, etc...  I had my gallbladder out in 1998 and had a biliary sphincterotomy 1 year ago to open up the sphincter of oddi muscle.  When I start to have attacks frequently then I have a MRI of the biliary tree (mrcp).  It shows a small stone in the bile duct.  I know that it is not good to leave them in too long because of the risk of infection, etc.  But I hate having the ERCP's because of the pain afterward. Anyway, I now know that my body is forming small stones in the bile duct about every 2 months.  I have had an ERCP that showed nothing also.  Of course I was in alot of pain a few days prior to that procedure and then I felt fine.  My doc is guessing that I passed the stone before the ERCP.  Right now I am stuck in the mode of "when will the next attack happen" syndrome.  I don't know if this relates to you directly but I thought I might pass this on and hopefully help someone out there who is suffering with this too.

[sarah3boys]

I cannot believe I am reading this.  I have been suffering from the same symptoms for 9 years!  So far, I have been diagnosed with Sphincter of Oddi Dysfunction.  There are times when my attacks are very frequent and severe and periods (of years at a time) when they are less frequent and more controlable (I take Levsin).  There seems to be a pattern with my attacks.  They are very bad about 2-3 months after I deliver.  I have three sons and after the birth of each I have flared up. My first episode came after the birth of my first child. I wonder if it is hormone related at all.  The frustrating thing is that just when I think I have it figured out -- I don't!  I have had many tests (upper endoscopy, HIDA, sonogram) and I had my gallbladder out in 1998 -- no help, perfectly good gallbladder.  ERCP is the next step, but I am not going to have it because I'm not convinced it will help, and the last thing I need to add to the mix is pancreatitis.  I am about to undergo testing for parasites as I have traveled to Peru many times.  Right now I am living on Oatmeal!

[krisg]

I take donnatal tabs.  Personally they have worked better for me than the Levsin/Levbid.  Thought you might want to check it out.

[leeza]

Hi Guys!!
It is very helpful to know that others have the same issues that I have. I am in the medical field. I am an ER nurse and still at times feel very discouraged at having pain alot of the time. I at least have the avenues/resources to ask the questions on a daily basis. I had my GB removed 1 year ago and still have the epigastric pain radiating to the back on occasions. I note that with increased stress on the job/home seems to increase this. My HIDA scan score was very low and my surgeon hadn't seen such a low score in a long time however my GB looked just fine after removal. The pain returned.  I have issues with a slightly elevated lipase at times. Liver functions have been fine. I have seen a GI doc 3-4 times. He is reluctant to do an ERCP because of the risk of pancreatitis. I guess I just go with it and try to destress and relax...not always an option but..... So know that you are not alone and keep your heads up. Keep asking the questions. Keep seeing your doctors. If you haven't had endoscopy's try that avenue and have them do biopsies. Good luck to all of you!!!
Lisa

[leeza]

Hi Guys!!
It is very helpful to know that others have the same issues that I have. I am in the medical field. I am an ER nurse and still at times feel very discouraged at having pain alot of the time. I at least have the avenues/resources to ask the questions on a daily basis. I had my GB removed 1 year ago and still have the epigastric pain radiating to the back on occasions. I note that with increased stress on the job/home seems to increase this. My HIDA scan score was very low and my surgeon hadn't seen such a low score in a long time however my GB looked just fine after removal. The pain returned.  I have issues with a slightly elevated lipase at times. Liver functions have been fine. I have seen a GI doc 3-4 times. He is reluctant to do an ERCP because of the risk of pancreatitis. I guess I just go with it and try to destress and relax...not always an option but..... So know that you are not alone and keep your heads up. Keep asking the questions. Keep seeing your doctors. If you haven't had endoscopy's try that avenue and have them do biopsies. Good luck to all of you!!!
Lisa

[magred]

Hello to all,
This is my 1st time going to this site. I too, am truly amazed of how many people have the same symptons as I do!!!! I had my GB removed in 1992. Last April I started having the attacks as if they didn't take out my GB. The pain was in the center of my chest that radiates directly thru my back. I get the chils and kind of clamy. I also want to vomit, and come close to passing out! The pain is so bad, that i can't breath or even talk.My chest feels very, very tight...as if I'm being choked from the inside out!!!

I have had the following tests done; blood work, Hida scan, Endoscopy. All came back normal, with the diagnos of possible gallstone in bile duct.These attacks were every 4-6hrs for 5 days straight!! I was told this would happen again, but at least it would be documented for future use.

Well, I started getting attacks again In Jan. and have been in pain for 4 wks now. I had a MRI, it showed a stone in my bile duct. I also had an ERCP 2 wks. ago and it showed nothing!! On Friday the 13th no less, and I was back in the hospital 10 hrs after my release, because of another attack and throwing up green bile!!!!!
Now I am scheduled for another ERCP, and Manometry, which measures the muscle that causes spasms. I'm having this done at
Beth Israel in boston Mass. I hope they can get to the bottom of
this illness!!!

Has anyone considered going to boston????? They are the best in the country...if not the world!!!!! I'm hoping to an end to this mess!!! I feel for each and everyone of you who suffer with this pain! I am sick of hearing I have a peptic ulcer, and don't even go there about EBS!!!! That's the doctors who don't know what the hell they are talking about.

If anyone has had a Manometry done....please respond with what your results were. I am scared to have this done, but I'm tired of feeling this way!  It seems we all have the same thing going on and none of us have any answers yet!!!! What's up with that??

Sorry so long, and thanks for listening.
Good luck to all, and I'll let you know my results.

[krisg]

Hi,
Yes, Yes, Yes....I can TOTALLY relate!  Everytime I have a MRCP after an attack, it shows a stone in the bile duct.  When I had my last ERCP the dr. found nothing.  I'm guessing that I am passing the stones before I get to the ERCP table.  I had the manometry done in 2000 and the dr. said nothing was wrong and the pressure was fine.  He said "IBS".  I had another ERCP with no manometry at the Univ. of PA in 2003 and the dr. could not access my bile duct and had to precut the sphincter to gain access.  I had scaring and mucus.  He performed  a generous biliary sphincterotomy and I had no symptoms for approx. 5 months.  Now I have symtoms (like minor attacks and major attacks), about every other week.  I was told by a local gastro. dr. that they will do nothing as long as my enzymes are not elevated.  So everytime when I have these attacks I take meperdine (demoral & anti-nausau med.) for a couple of days then I am fine.It keeps me from going to the ER all the time. I hope Boston is a great hospital for you.  I am considering making an appt. with a Dr. Glen Lehman in Indianapolis, IN.  I have heard that he is the best.  I always have my doubts though.  I have been through the ringer with dr.'s and am soooooooo tired and exhausted from this whole ordeal.  It has lasted for 6 years now.
Good luck with your upcoming visit.

[mizdonna]

I've been trying to find people experiencing similar symptoms to mine for years now.  I had my g.b. out 15 years ago, and have periodically still had attacks. I changed my lifestyle, cut out the bad food and lost 40 pounds. The attacks became less frequent, but are still enduring. Does anyone have symptoms of terrible lower right abdomen pain like colic, following by a full body sweat and watering mouth with rising pain? At that point, the pain stops immediately, but I feel completely drained and tired. I have tried not eating in the p.m., taking laxatives to ensure proper bowel movements, and still an attack can occur unprovoked. Interestingly enough, most of them happen between 9 - 9:30 p.m. If anyone else has experienced this, I would love to hear from you and know that I am not alone. I am thinking of having a food allergy test and seeing a naturopathic doctor who specializes in chinese medicine and acupuncture. Any other suggetions that may help altogether. much thanks.