Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

623 Members

2,803 Posts

0 Online

yeuker 01/06/2015

Hey Everyone,

I've been a semi-regular poster over the last few months. My story started about 4 months ago with upper back pain originating near shoulder blade but moving all over. Feels like I am bruised inside and someone is pushing.

About 2.5 months ago I got wicked stomach pain after eating, then a period of bad gas (both ends), severe nausea and lack of appetite where I lost most of my weight. This lasted just over 1 month.

This was followed by burning pain near my sternum that doesn't seem to go away and persistent.

Lastly I have pain in my sides near the bottom of my ribs. Feels like stabbing pain.

Also, I've dropped 50 lbs which is a lot. The weight loss has slowed down but I am still loosing even though my appetite is much better and the nausea is better as well. I am still not eating like a normal person and have limited my fat content greatly and clearly stopped drinking completely.

I have no diarrhea and have not thrown up, all blood work is cool.

I've had an endoscope, very thorough blood work, CT of pancreas, CT and xRay of chest and ultrasound of the rest of my abdomen, all normal. I am scheduled for EUS and MRI at end of the month.

Clearly I know there is something wrong and I live daily in pain but the docs have no clue to what is wrong. I know there are others in the same boat. My questions are these.

What can I do to get diagnosed better?
How do I know I don't have something more serious than cancer?

I am Canadian so have free but slow health care. If you were in my shoes, would you travel south to the mayo clinic for a second opinion? I don't have much money (who does?) but could probably scrape and borrow for the cost of the appointment.

Thoughts? What would you do?

C

barbray10 01/08/2015

I would absolutely find someone who specializes in the pancreas, probably a gastro dr. He/She should be able to advise you on what to do next. I've had good luck at universities. Prayers coming your way.

julinoz 01/08/2015

I am in the same boat as you and if I had the option of going to a pancreas specialist or hospital where they diagnose and treat I would definitely go. We don't have that option here we have "free health" although pay big tax levy for that, my husband and I also pay private health as well but doctors won't be hurried. Would you get in any quicker than your scheduled appointments? Whatever you decide good luck, I know how frustrating all this waiting is.

bookwitch 01/09/2015

Keep looking for someone who can help you. I had "normal" numbers, which led the doctors to believe I was getting better, although clearly I wasn't. Turned out my pancreas was dying. Not trying to scare you, but blood work doesn't always tell the whole story. Keep looking for someone who really understands the pancreas. It's a mean little organ.

Sesser 01/09/2015

This sure does sound like your pancreas. Please do keep us updated on what they do or do not find. For me the only test to show damage after 6 yrs was the S MRCP (its an MRCP with secretin NOT contrast). All 7 of my EUS were clear, but this test showed it. I would ask for this if your EUS is clear. An EUS is about 70% accurate from what my dr told me, S MRCP is greater though I cannot recall the number

Sesser 01/09/2015

And no, I would not go to Mayo- they are surprisingly not versed in CP. Go to U of MN if you can.

yeuker 01/14/2015

Yeah, from everything I read it does sound like my pancreas. I am pretty well educated and decent at research but certainly no doctor :-). I have seen a gastro doc and although he is very nice and I believe he wants to help me, many of the things he is telling me are very contrary to what I read in pancreas articles. My nausea is almost better and my pipes are moving better... but I am still in pain and can not gain weight. There is something pretty serious wrong inside of me, that much I know.

You mention that Mayo is not great with the pancreas, but University of MN is. That is great advice and something I would have never known. I will give them a call today and see what i can do to get down there. I have a meeting with a very good internist here in Canada on the 21st, an MRI of the pancreas on the 24th and and EUS on the 31st. Those are all good tests but I am loosing faith a little bit.

I started taking digestive enzymes (OTC) yesterday and am hoping that will help a little with the weight gain but not holding my breath. Yesterday is the first day I was able to get down t normal number of calories in a long time although seem to be paying for it today.

Thanks for your help folks and keep the advice coming. Pretty new to all this, 2 young kids and obviously a little worried. I truly appreciate all your help.

Cory

angelica6257 02/06/2015

I wouldn't put anything off. I am a Canadian and had to wait almost three years to see a specialist. By that time, the pancreas has been compromised and you cannot get a new one....

Join the Conversation