i am a 30 year old female who has suffered excrutiating upper abdominal pains (directly below the sternum) on/off for 12 years with episodes occurring typically once a year and lasting 3-5 days. i have been sent numerous times to the ER for treatment of the pain. each time was sent home with some new diagnosis. ususally, stress, gastritis, unknown, irritable bowel, etc. at some point i did see a GI doc who perfomred an upper endoscopy and an ultrasound of my gall bladder. of course know one could see me during an episode. any tests that were preformed were months after an occurance. he saw irritation in my duodenum and sent me home with prilosec. gall bladder appeared normal. also checked my cholesterol which against his prediction was fabulously low. I will admit, i eat an AWFUL diet.
it was during my second pregnancy that i had another flare up (6 years ago) which actually hurt worse than labor (didn't know i was having contraction.) it was a week before my due date-went to get rehydrated at hospital-ended up delivering a baby that day. by the way he was born having seizures and not breathing. he spent a week in NICU and miraculously came home a healthy baby. neonatalogist cannot explain hes full recovery.
years wendy by with flare ups on/off. was 8 months preg for my fourth child. had my worst episode ever. rembembering my sons birth, i call my ob doc immediately. sorry about lenth-i'll continue on a new post
this is a continuation of previous post: he had me go to OB triage at the hospital for a non'stress test on the baby. baby checked out ok. however, my opper abdominal pain was masking contractions. they got contractions under control and sent me home. (disregarding the upper ab pains, swelling, bloating and intense pressure in lower ab) threw up green fluid and lived the longest night of my life in pain. called OB in the morning for some relief and sent me back to triage. long story long (: i eventually had a baby that day delivered c-section. it ws during that procedure that my OB discoveredyellow, gelatinous fluid filling my abdomen. however, he told know one about it and sered me up. i discovered the fluid pouring out of my incision the next day. i FINALLY had the attention of SEVERAL doctors.
blood tests of all sorts were run for various diseases and chemical levels (especially liver funtion.) a low albumun level led them to bring in a GI doc. i had a HIDA scan, CT scan and ultrasound perfromed. all turned up nothing. it ws decided i would be sent home to heal from c-section and later have a colonoscopy and upper endoscopy. which turned up nothing. the GI doc was shocked by negative results because i was irritated from top to bottom epecially the terminal ilieum. i then had a small bowel follow thru x-ray which also showed thickening in the ileum. then has a prometheus blood test which showed no crohns or colitis! still GI doc wanted to treat me for crohns. put me on Pentasa 1000mg. which i refused to take becase i felt my problem lied elsewhere. my research was leading me to believe it was pancreatitis especially because of the fluid in my ab and several of my test results from my stay in the hospital (CONT)
please forgive me for the length! i brought my test results to a surgeon who after looking thru my findings agreed to remove my gall bladder. a common practice for pancreatitis patients. he found a condition called strawberry gall bladder. cholesterol stranding or stringing that builds up. he said it was the worst case he had ever seen. (he's a revered, older surgeon) he said it never shows up on any tests and people who have it go undiagnosed for years! imagine my delight! i thought i was cured!
two months later, i had another episode which brings me to present day. i crawled back to my GI doc. who told me to take the pentasa and entocort 9mg. had an MRI of pancreas which checked out normal. my episodes have now begun to last 2-8 weeks. Unbearable pain below sternum, later (2-3 days) terrible swelling and bloating in my lower ab. this is also accompanied by frequent, yellow, fatty stool (4-10x per day) can't eat lost 10 lbs in 2 weeks!
i just don't buy crohns because of the fluid and where the pain lies. anyone have any suggestions!!????!!!!??? besides cut the longwindedness? (:
Pancreatitis would cause you severe pain. The pain would would be directly in the pit area of your stomach and it would shoot all the way through to the middle of you back. Very SHARP pain! The yellow stool sounds a lot like jaundice (The liver) or the spleen. I know this is probably not what you wanted to hear, but I would highly suggest getting more oppinions by GOOD GI's! Something's deffinitely going on with you. I feel really bad as well, as it sounds like you've been through hell. For good GI's in your area, try this.
Also, you might want to post this over at webmd under ask Dr.K digestive disorders. I'm sure you'll get a lot of responses.
I agree with the idea that you need to see a another GI. Have some bloodwork done, hopefully when you are going through an episode of pain. There is a chance that your amylase and lipase levels would show an elevation, yet they return to normal within just a couple hours, lipase takes a little longer to drop. The location of your pain sounds very much like where mine was located before my first attack of acute pancreatitis. I now have chronic pancreatitis. I also had the yellow stools, either fatty or so oily that they would float. Also had the weight loss and inability to eat. Back ache is also a common complaint, but not everyone gets it.
You need a second opinion.
If you have any more questions about CP, feel free to email me personally at: ***@****
Elevated lipase usually indicates pancreatic insufficiency or inflamation. Lipase levels drop back to normal within a couple days of an attack, and sometimes with advanced chronic pancreatitis, amylase and lipase levels do not elevate at all, even during an attack. This often makes bloodtests not always accurate in diagnosing chronic pancreatitis. Triglyceride levels should be checked and or a trypsinogen study done. There are also the diagnostic tools of ultrasound, CT-scan, or MRI's. And, of course, the ERCP.
It is good that you are going to see a gastroenterologist, he or she will hopefully persue this further, find out what is causing your problems and recommend the appropriate treatment. Good luck.
My symptoms were pretty similar to yours. Except that my gallbladder after a hida scan showed it was only functioning at 15%. My pain like yours was far apart for the longest time. For years (they started at 16 I'm 36) they would come and go about every 3 maybe 6 months apart. Then the pain which like yours was right bellow the sturmun. Seemed to get suddenly worse happening more frequent for a longer time. My pain was always in the same place never moved, but did spread into my back. My belly would bloat like crazy giving me a pregnant look. I took gas-x trying to relieve it for years.
When I did have my gallbladder removed. The pain turned into a everyday thing. It would wake me up at 1 - 3 - 5 in the morning with pain so severe I would sweat like crazy. I'd force myself to vomit - just for a little relief. Then it would come and go like waves until after I'd eat. I put on 28lbs in 17 months trying to help relieve the pain. I went to Dr after Dr hoping someone would know what was wrong with me, and I was getting worse. More pain and thoughts of suicide. Which for me was the scariest thing because I have family with mental illness and always thought I was fine. I read and read trying to find something I could share with a Dr so they could help me. By the way I had doudentitis just like you mentioned you had. Finally found a Dr who knew when I walked in what was wrong. I had Sphincter of Oddi Dysfunction stage 2. Which means my liver was showing signs also. To find out For sure thats what it was when I had a ERCP with menometry - which measures the pressure in the bile duct. Mine was extremly high and I then had a sphincterotomy. Which has been a life saver for me. I have been pain free now for a month. Which is a long time considering for just about 18 months my pain was daily. Do a little research on this and see if it fits. The pain resolves around eating. Either not being able to or having to eat. I got pancreatitis from the precedure it was well worth it to get rid of the pain. Pancreatitis pain for me was much different - the pain spread across the rib cage settling mostly in the left side, and in the back. I did have severe bloating and was unable to pass gas. Pushing on my stomach was unbearable. I hope this helps you.
What a relief to read that others are experiencing the same pain I have but let me also say, "I'm sorry for you." For the past 2 1/2 years I have had 'episodes' where I have had such severe high abdominal pain, couldn't eat because of the pressure pain of the food within 30 minutes of eating (got down to broth only), nausea, vomiting, and tenderness. At the time of the first episode I also experienced bloating & fluid retention but the doctors have been ignoring this symptom. The episodes last between a couple weeks to 2 mths and then nothing for about 9 mths. I notice that during an episode I cannot tolerate milk but can when not in an episode.
I have had the standard tests (sonogram, cat scan), blood work (my lipase slightly elevated) done by the first internist who insisted that I had IBS even though I had very few symptoms. I insisted that was not it and all I rec
This sounds so familiar! I too think that it is Sphincter of Oddi. You need to have an ERCP with manometry. I had been treated for Crohn's for 20+ years only to find out that the real source of the chronic, sometimes debilitating pain, was the Sphincter of Oddi or what they call SOD - Sphincter of Oddi Dysfunction. The sphincter tightens up, spasms closed and the bile/fluids cannot get thru the sphincter muscle. It is incredibly painful. Now that said, I have had the sphincterotomy with no relief. I had a stent placed in the duct and muscle for several months with great success. My stent was removed April 4th and am just now beginning to have some problems. If you can't get results from your current GI, find another one. Good luck to you! It is an incredibly painful situation and I hope you can find some relief.
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