Hi - well my daughter saw the gastro doctor about doing an ERCP for her pancreatitis and he was very cautious. That is good. But he thinks maybe she has IBS and not pancreatitis. So now we are more confused than ever. The symptoms that lead to his thought that it is IBS is that her pain always comes with her menstral cycle and she has mucus in her stools. Other than that her symptoms go more with pancreatitis. Pain above her left ribcage that goes to her back - pain about her shoulder blades. When we saw the Dr.he had a complete blood work report in his hand and it showed raised amylase (131) and lipase levels (718)
which I always thought showed pancreatitis. When I questioned him he said some people just have high levels and it is normal for them. I don't buy that. Her triglycerides were high too (26l)as was BUN (4L)(what does that mean) and her total protein (8.5). Does anyone know what her levels should be? He gave her a specific diet high in fiber and Citricel and some pill to put under her tongue when pain starts (antispasm medicine). I have a question. What causes the mucus in the stools. Her stools have always been sticky and gooey. She also has cystic fibrosis and I always thought it was related to that but now I'm thinking maybe not. Maybe it is IBS. But what about the back pain and eleveated blood levels? Any info at there on why hormones would trigger this and last of all she now has migraines since her gall bladder was taken out. Whats up with that? Going nuts trying to figure this out. Any comments would be appreciated.
I have the same symptoms as your daughter. I too had a Dr tell me it was IBS. That was a DR at the Mayo Clinic. I was told they were suppose to be the best. I think the IBS is just a symptom of what ever else is going on. I remember leaving that Drs office with an elevated liver and he said "we'll just keep an eye on it" None of the medications worked for me, and it is so frustrating to be in so much pain and no one will listen. Keep pushing it. If you can't find another Dr keep going in until they refer you somewhere. Thats what I did and it was the best thing I did.
It sounds to me like your daughter may have pancreatitis, symptoms for this is as follows: severe abdonimal pain moving to the back, fever, loss of appetite, nausea, and vomitting. There may be yellowing of the skin. IBS symptoms are as follows: Diarrhea, and sometimes pain in the lower abdomen. The pain is often stopped by having a bowel movement. Hope this helps a little and good luck!!
Hi - you seem to relate to pain during menstral cycle. What do hormones have to do with it. Do you know? I think she has pancreatitis. Will keep trying to put the pieces together. Again- does anyone know what is the cause for the mucus in the stools? Thanks
Just had to add my two cents in. I have Chronic Pancreatitis. It was years before I was diagnosed. While you have been told by the other forum advisors what the signs are...I must tell you that I never experienced sudden weight loss, nausea, vommitting or loss of appitite. I have always run a low grade fever tho'. I will say that the times I have experienced vomitting, nausea and loss of appetite were when I was in the middle of a pancreatic attack and needed hospitalization. I also am pretty sure that amylas and lipase levels arn't supposed to be over 63. But the doctor (specialist} I am seeing now is not concerned with what my levels are anymore. He says that my levels can be very high and I can have no pain at all, or they can be low and I can experieince extreme pain. The key is to see how your daughter feels and work with that. If she is experiencing pain, try to get her bloodwork done before she takes any pain medication. That can make the levels normalize. Also keep searching for a doctor who will treat your daughter and her symptoms. IBS has become such a common place diagnosis. Just wanting everyone who even MIGHT have this dreaded disease to ge the best care and earliest diagnosis they can.
There are good gastroenterologists and there are bad ones. Some specialize in pancreatic problems, others don't, and personally, I think you got one of those that don't! I have had acute pancreatitis and now have chronic pancreatitis. The lab that tests my bloodwork says that with amylase, anything over 88 is high, lipase, anything over 63 is high. Some labs allow a higher range for both, but even those adjusted levels are less than your daughter's levels. Her lipase is especially high. Her triglycerides are high. Another important indicator. Don't buy it!
I don't menstrate anymore but know several women with CP that do, and they ALL say their pain is worse during their cycle. Mucus in the stool is a common symptom of poor pancreatic function (non absorption of fats), and most of us with CP have mucus in our stool everyday.
And as for the CF issue. Studies have shown a clear link between the CF gene and chronic pancreatitis, just that fact alone should have alerted the doctor.
Back pain is also another symptom of this disease. I posted earlier under some other questions in the last couple days about pancreatitis, you may want to look at those posts. IBS sounds like a cop out to me, and I would suggest you pursue this further. Good luck.
I'm guessing the pain around the menstual cycle is caused by hormones. A lot of women get diarrhea at this time. I haven't found a Dr yet that would answer that question for me either. I can tell you that my most severe attacks were the week before or during my period. After the pain eased up a lot. I dreaded that time.
Hello, You said that it seems to happen during menstral cycle, the pancreas also controls hormones, so it's a possiblilty it is pancreatitus. I had a bad attack 6 weeks ago and it has affected my menstral cycle. The week before my periods I get terrible pains in the same place your daughter does. I also suffer with Lupus and they at first though it was a connection to that. I had obstructive Jaundice which bought on the pancreatitus. The mucus in the stools I had when I was admitted to hospital and I was told it was the pancreas causing it. Hope you get the answers you need. Good luck
some 20 years ago i was experiencing sever upper gastric pain and thought to be ulcers, not, i had many tests run and finally had an ERCP done and it resulted in Pancreatitis. In 2000 i experienced excrutiating pain in the upper abdomen through to my back, for the first 2 days of this i was so sick i couldn't get to the doctor. when i was finally able to get myself to the Dr. he immediately put me in the hospital but by this time my amylase and lipase levels were within normal range. i continued to have these "spells" over a period of time and the only elevations were my liver enzymes. I sought out a G.I specialist at Vanderbuilt Hospital in Nashville Tn. who finally diagnosed me with Sphincter of Oddie Dysfuntion. The only possibility for relief was a procedure known as Oddie sphincterectomy. The down side to this is the procedure ERCP, which can cause Pancreatitis. Having already been down that path and being 20 years older it is a scary thought, so I just live with these periodic "spells" It is very depressing and affects my whole life because i live in constant fear of an attack and I can't pin point any factor that brings an attack on. This procedure isn't 100% to solve the problem and the thought of Pancreatis and it's severe symptoms well I just am not ready to take that risk. I would appreciate any input from anyone that has had thia procedure done and the results of it for them.
I had the sphincterotomy 2 weeks ago. What a relief it has been. I did develope pancreatitis from the precedure. I can tell you that in my case I was very informed of the risk involved. The Dr who did it told me before I went home " if you have any problems with stomach pain, vomiting, fever etc - go to the ER tell them you had this and the risk involved" I did I went in at 8 in the morning and because I was informed they were able to catch the pancreatitis early. I stayed in the hospital for 3 days by the time I went home I was pretty much back to normal and went on my daughters field trip the next day.
For me the risk was worth it. I had been in so much pain prior to this with sphincter of oddi dysfunction. It was very depressing for me. Toward the end I started thinking I couldn't live much longer with this pain. I tried everything to get rid of it changing my diet, cutting my coffee, no tomatoes, lots of prayer. Nothing work or when I thought it was - it would come back with a vengeance. I took the risk and went ahead with this precedure. I no longer have the pain. That was my goal. I still am having problem with a gas build up in the upper abdomen, but I think that is the pancreas trying to get back to normal. Time will tell. I really think if you have the right Dr the risk is worth it.
I have had pancreatitis since 2000 (aince I had an ERCP in that year). I always have an attack a few days before my menstrual cycle and was told that high levels of estrogen can cause pancreatitis attacks.
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