Pancreas disorders since bypass

Hello everyone it's been many years since I've been on the boards but I'm interested to know if other RNY bypass people have pancreas issues.  I was very sick for months with pain so bad I'd hit the floor in agony. Finally after so many scans, tests, unleash undo and nuclear medicine tests they discovered I have a stuffed pancreas and it's called Exorcrine Pancreatic Insufficiency.  It's when the pancreas exocrine section is down to about 10% function.  I sat in the doctors surgery with a specialist telling me that unless we can increase the function the it's "game over" as she put it.  So now I am taking 150,000 IU of Pancreatic enzymes a day to try and get things working.  I had my bypass 5 years ago and it was revision surgery from failed lap bad and failed Sleeve (VSG) long story.   Is there anyone else here who is also part having pancreatic issues?

I'm sorry you are dealing with this. I have a friend with 2 kids with CF who have to take pancreatic enzymes and they work very well for them. I do not know any RNY people dealing with this but I just read that RNY can cause EPI. Would a reversal help? What does your bariatric surgeon say? I realize you have been through a lot of surgeries already. I hope the enzymes work for you and that they bring you relief.

Hello Laura, 

Thank you for replying.  I can't be reversed due to all the multiple surgeries and major surgery for twisted bowel.  The enzymes appear to help a lot but it's just a matter of adjusting the dosage now due to Bypass restricting how much I absorb. I still bouts of horrific pain and the doctor said it's chronic pancreatitis and I'm scared as constant pancreatitis I have read can cause pancreatic cancer. 

I haven't posted on the boards in years as busy life gets in the way, but felt it's time for me to start researching again for others in this same position. :( 

Thank you for replying it is wonderful to hear from you.

I am sorry YOU are dealing with all that. 

App 3 years post ok RNY the docs discovered cysts in my pancreas.   There were not there a year earlier. Since then I have been under pancreatic cancer doc care. For 3 years I had at least 1 MRI per year. So far the cysts have not changed.  So now I only need MRI every other year. 

We don't know why I got them. 

Thank you so much for letting me know what is happening to you.  I have multiple cysts on my liver that weren't there either prior to surgery.  It scares me that we go through this for health reasons yet other things occur.  Do the pancreatic cysts interfere with your processing of foods?  Do you take the pancreatic enzymes at all?  I take Creon enzymes in large doses.

No, I don't take any enzymes. So far my cysts are stable, and rather small. It is watch and see. They are stable over last 3 years..and my doc told me that it is a big chance that they Will remain like that. 

Study shows that post op RNY - our pancreas gets too active - makes to much insulin and probably other hormones or enzymes.. And can wear out faster... 

And there are more issue that can happen...like adult onset of Nesidioblastosis

http://www.nejm.org/doi/full/10.1056/NEJMoa043690#t=article

That can be difficult to diagnose... And be lot of endocrinologist don't even know about it... (i met at least one of them - an educated moron) 

I started having severe abdominal pain about 2 years ago.  I'm 7+ years out from RNY.  My bariatric surgeon sent me to a specialist at Indiana University Medical Center.  This doctor did much testing and I was diagnosed with pancreatitis.

 He did not want to do a ERCP because he would have to surgically insert a "feeding tube" into my abdomen and wait for 6 weeks (for it to heal) and then he could perform the ERCP.  It is a risky procedure and I decided not to do it.

I find that fat/oil is the worst culprit for causing the pancreas pain.  I avoid all fried foods, no fast food, eat fat free (milk, cheese, etc.), baked goods with fat. Unrelated to pancreas - I also am gluten free and have reactive hypoglycemia - so very few grains and no foods with more than 9 grams of sugar per serving.  SO - I eat a very restricted diet.

When I have the pain flair ups I take oral narcotics and so far the pain will subside within an hour or two (sometimes I take a second dose of narcotic).  The only enzymes I take are for digestion (papaya) and I use them every day.

As long as I can control my diet and the pain - the specialist doesn't want to do anything invasive.

Don't know if any of this will help you - but my pancreas issues did start after my RNY (also - my gallbladder was removed 34 years ago).

Best wishes,

Penny

Karin -- I'm so sorry to hear all you have been through.  If I may ask, what type of pain and where is the pain you're having?  I ask because I have had intermittent pain on the left side of my abdomen for the last year or so.  I had lap band surgery in 2007, which was removed in October 2015 due to 80% erosion into my stomach, and am scheduled for RNY on 8/9/16.  The pain I get is on the left side of my abdomen, pretty much where my port for the lap band was.  The last time I had pain I was walking home after work - hadn't eaten for at least 3 hours, and it stopped me in my tracks and almost had me on the ground.  I mentioned it to the PA when I saw her last week.  She felt around my abdomen and didn't seem concerned about it.  Just wondering if this is anything similar to your pain and location. 

Good luck to you with treatment of this condition.

Sonja

Hi Sonja,

My pain was smack bang in the middle and radiating up under the right rib cage.  This is why the doctors first thought I had gallbladder problems.  Ask your doctor to check for scar tissue or adhesions form the port being located on the left side.  Wen I had my twisted bowel surgery it was due to scar tissue tangling up my bowel and rolling the bowel up into a ball like a ball of string.  I had two surgeons for 6+ hours to untangle the scar tissue mess.  Don't discount horrific pain from this type of scar tissue.  The pain from the scar tissue rolling up my bowel was so bad I kept passing out hitting the floor at work.  Not a good thing thats for sure.

Ask you doctor to check this when they are in there doing your bypass.

Good luck honey.  You won't regret having the surgery and you will get a great new lease on life.