Nausea every day

[Justinsmama]

Hi,

My 8 year old son Justin was diagnosed last February. He is pancreatic insufficient, with his last fecal elastase numbers being 25, which is when they stopped testing him. He is on Creon. He started with nausea and pain in his upper mid abdomon (mostly left side) on and off since August or September. Since October it has gotten worse, and the past couple of weeks it is every day. He takes medication to control the nausea which he has been taking every day. His GI first thought it was constipation (a huge problem - on 2 caps of Miralax a day) but after a clean out nothing changed. His GI and CF docotr have scheduled an MRCP to look at the pancreas and then, depending on results, may try adjusting his Creon if nothing is found.

He apperently does not have pancreatitis because his enzyme levels are low not high.

Does anyone have any experience with this kind of thing and any suggestions? We have to wait another 2 weeks for the MRI and then another week for the appointment. I hate seeing him feel this way everyday.

Thank you in advance.

Josette in PA

 

[Printer]

Justinsmama:

In my experience. pancreatitis is not dx by enzyme levels. My condition was ALAYS determined by a simple blood test called syrum amulase (sp). If I were you, the next time that he has "pain" take him to his CF Hospital ER and ask for that blood test.

Bill

 

[Jana]

Josette,

I had that problem pretty constantly for close to a year. Eventually it became more and more settled into a spot on the upper left side of my abdomen.

Although my enzyme levels are also low, the GI doctor at first told me he thought the problem was most likely caused by chronic pancreatitis. A CT scan showed my pancreas to be largely dead (turned to fat) from years of pancreatic insufficiency causing inflammation, so obviously I had had chronic pancreatitis for a long time.

I was glad to know what was going on but still had to live with the pain. He did suggest I take charcoal tablets after meals to help absorb the excess gas in my system from malabsorption. That helped because it got rid of a lot of the bloating and some of the constant stomach pain (and maybe that's when I could really tell where the specific pain on the left was coming from).

The situation came to a head last year when I had a sudden, severe attack of pain with vomiting. The GI doctor figured it was the pancreas, but after looking at another CT scan and blood work decided that my pancreas was too dead to create that type of situation (acute pancreatitis). He did some more tests and discovered that my gall bladder was filled with small stones, and the biliary duct shared with the pancreas (on the left side) was blocked with very thick bile, also common for cf patients. Although my liver enzymes had been normal at my last visit with the GI doc, they were extremely elevated when I had the attack--something like 1200 instead of under 50.

The good news is, he put me on actigall to try to get the bile moving, and that quickly made me start feeling better. I have to stay on it all the time and sometimes have bouts of pain, but nothing like the year of constant pain I had before that. Also, no more terrible attacks so far--it's been about 9 months.

I apologize for the length of this. It seems to me the possibilities for your son are probably about the same as mine. It could be chronic pancreatitis or a bile/gall stone problem which just hasn't become acute yet.

Hope this helps. That was a miserable situation for me as an adult, so I hate to think of a child being in that kind of pain.

 

[Jana]

Amylase is a pancreatic enzyme. Sometimes they also test for Lipase, so probably the doctors just said it differently--pancreatic enzymes or serum amylase.

 

[CrisDopher]

I suffered from chronic bowel pain throughout childhood and occasionally still have episodes, though they are far less frequent and far less painful than they used to be. I don't have any solutions, but can highly empathize with what your child is going through.

 

[welshwitch]

I went through a period when I was 14 or 15 of similar sounding issues. I thought that maybe I had appendicitis. I would have horrible stomach pains and then throw up. I went to the doctor and they couldn't really find any reason for it. I eventually took some TUMS at the drugstore and it magically cleared up! I haven't had any episodes like this since. TUMS was the answer for me. Hope you can find the answer for your son.

 

[Justinsmama]

Thank you all so much. Bill, his amylase level was 50 about a month ago. He was having the problem then. I am not sure if that rules out all problems with the pancreas such as problems with the ducts or long term pancreatitis? Jana, that does sound like what he is going through. He is also running a low grade fever on and off (99.5 to 99.9) and when the "attacks" come on he looks really pale. Also says his body feel like he has the flu on and off.

Welshwitch, thanks for your thoughts. He is on a double dose of prevacid to control the acid. I appreciate your thoughts too.

Josette

 

[Jana]

Low grade fevers are not uncommon in cf, and I would think that any number of possible issues that could be causing his abdominal pain and nausea could also cause the fever. For me, that flu-like, achy feeling along with a low-grade fever often come with problems from the bacteria in my lungs.

Paleness, I believe, is often associated with both pancreatic and gall bladder attacks.

I'm not completely sure about the whole pancreatitis issue but think the reason they check for pancreatic enzyme levels in the blood is because acute pancreatitis is caused by a blockage in the duct resulting in enzymes being dumped into the blood stream instead of going where they belong. This is why, if the pancreas is no longer producing a certain level of enzymes, acute pancreatitis is no longer possible. I'm a bit fuzzy on the chronic pancreatitis but assumed from the way the GI doctor said it to me (my pancreas basically died from constant inflammation) that he's using a literal definition of pancreatitis here--inflammation of the pancreas. My understanding, then, was that the pain could be simply from that constant inflammation without involving the enzymes incorrectly ending up in my bloodstream.

In the end, my problem didn't turn out to be actually with my pancreas but with a bile duct in the same area. Because of the confusion, I just learned quite a bit about the pancreas in the process!

Bill knows a lot more about pancreatitis than I do, so perhaps he can clarify or correct me on this.