Scared I'm dying!! 9 yrs out developed Acute Pancreatitis

[2014malves 2]

I had Roux en y 9/10/07 went well for about 4/5 months then developed twisted-kinked intestine need additional surgery to place stitch to hold in place. All seemed well lost weight health improved. Developed severe anemia in 2010 need Iron infusion but that resolved it. Plateaued around 135 lbs by 2011. Started loosing for no reason mid 2012 dropped to 125. Doc did numerous test but everything came back normal no worries. Have been dropping steadily for past 2 years now 109.4 lowest was 104.3 in Dec 2016. Still docs say no reason to worry . On Oct 26 got hit with severe abdominal pain felt like when I needed my gallbladder removed back in 1997 but a million times more painful. Needed to call 911 i couldn't move. Blood-work, ultrasound, CT-scan, MRI all said popped ovarian cyst and acute pancreatitis. I had developed stones in my bile duct and it had dilated to 17 cm. 3 days no food hooked to an IV with only ice chips then discharged to follow up with Gastroenterologist. Dec 2, 2016 I had to have laparoscopic ERCP due to bypass. I was told the ERCP was a 99% chance that I'd never experience it again. Procedure went well recovery was painful as hell for weeks after though.They told me laproscopic so I thought easy peasy no big deal. They didn't tell me they needed to make 3 small incisions but one large 2.5-3 inch for the scope to be inserted that causes killer pain after. Now March 16, 2017 pancreatitis symptoms back mid day out of blue hadn't even eaten anything that day. Kept me in bed I refused to go to hospital cause they don't do anything I couldn't do at home. No food stay hydrated till symptoms pass. 2 days later I'm tender but pain gone going to start a liquid only diet very slowly see how it goes.

Scared my pancreas is wrecked I'm suffering from malnutrition caused by malabsorption. Pancreas has a lot to do with absorption it secretes enzymes needed to absorb nutrients. That's why I'm still losing weight despite eating large amounts and taking Protein and other supplements. Afraid I'm going to die I just turned 48 I have 7 children and an amazing husband I don't want to loose. I feel like docs aren't taking it seriously even my weight loss. I have classic signs of malnutrition that they are all ignoring, primary care doc, weight loss surgery follow up and gastro. IDK what to do?

Anyone else have pancreas issues? Please any help or advise is welcome. Thank you

[OutsideMatchInside 10,166]

Find a different doctor.

[RickM 1,753]

It does sound like a different doc may be in order. Either a Gastroenterologist or Hepatologist (liver guy) would work in this area (my bariatric surgeon is also a biliopancreatic - liver/pancreas - transplant surgeon, so those are overlapping areas of expertise.) Pancreatic enzymes can be taken orally to counter the malabsorption - some DS patients need to take them for a time if they are losing excessively until things adjust, so there is no need for serious malnutrition while they work things out. Ask around on one of the DS forums as to what ones are used as a suggestion to your doctors if they aren't familiar with them.

There are specialists who understand and deal with these things, but sometimes it takes some effort to seek them out, particularly if there isn't one in your PCP or bariatric surgeon's network of referrals.

Good luck in working this out.

[Vironica 10]

Praying for you, God Bless. XOXOXO

[2014malves 2]

Just an update. Spoke via phone to PCP's nurse who said to just said to follow up with Gastro so I already had appt set for 29th with doc who did ERCP back in Dec. Same guy who practically guaranteed me if I had the ERCP I wouldn't ever experience pancreatitis again. Been doing a lot of reading and I'm starting to think that what I've been thinking had been simple slow healing pain from surgical ERCP recovery might actually be Chronic Pancreatitis pain. The constant dull ache that really hasn't gone away only decreased in intensity over time at the large incision site where scope was inserted in my upper left abdomen and occasional sharp stitch in your side kind of pain isn't normal. No one is ordering any pre appt testing even bloodwork. All gastro in my area is part of huge group practice affiliated with local hospital. Don't even know where to go for second opinion. Haven't called bariatric surgeon office don't know if there is even a point. I feel like no one is seeing the big picture of my medical issues as whole and connecting the dots like I'm beginning to do as a simple layman. Very frustrated and extremely scared another attack could just happen out of blue with no obvious apparent reason at any second. Feeling totally helpless. I'm keeping a food log and I have stopped all non perscription meds and all vitamin-mineral supplements till I see doc next week. I'm praying I don't have to go to ER in pain meanwhile. Can't ride out that intense pain at home again I'm simply not strong enough at this point.

Will update after seeing Gastro next week. I'm upset and it isn't boosting my confidence in this doc that no pre appointment test have been ordered. I would think basic lab work may show something doc can run with starting next week instead of wasting appointment just to tell me I need XYZ tests to see what's going on then following up after. Seems like a drawn out way to approach the problem of your patient who is experiencing severe pain.

I'm also wondering if a revision bariatric surgery, maybe gastric sleeve ( if it's even a possibility ) instead of my maintaining my current Roux en Y status, would be helpful to restore absorption and alleviate malabsorption/malnutrition issues before permanent damage to my other organs occurs if any haven't already occurred. Anyone's thoughts on that possibility would be appreciated?

[Middus 491]

Just an update. Spoke via phone to PCP's nurse who said to just said to follow up with Gastro so I already had appt set for 29th with doc who did ERCP back in Dec. Same guy who practically guaranteed me if I had the ERCP I wouldn't ever experience pancreatitis again. Been doing a lot of reading and I'm starting to think that what I've been thinking had been simple slow healing pain from surgical ERCP recovery might actually be Chronic Pancreatitis pain. The constant dull ache that really hasn't gone away only decreased in intensity over time at the large incision site where scope was inserted in my upper left abdomen and occasional sharp stitch in your side kind of pain isn't normal. No one is ordering any pre appt testing even bloodwork. All gastro in my area is part of huge group practice affiliated with local hospital. Don't even know where to go for second opinion. Haven't called bariatric surgeon office don't know if there is even a point. I feel like no one is seeing the big picture of my medical issues as whole and connecting the dots like I'm beginning to do as a simple layman. Very frustrated and extremely scared another attack could just happen out of blue with no obvious apparent reason at any second. Feeling totally helpless. I'm keeping a food log and I have stopped all non perscription meds and all vitamin-mineral supplements till I see doc next week. I'm praying I don't have to go to ER in pain meanwhile. Can't ride out that intense pain at home again I'm simply not strong enough at this point.
Will update after seeing Gastro next week. I'm upset and it isn't boosting my confidence in this doc that no pre appointment test have been ordered. I would think basic lab work may show something doc can run with starting next week instead of wasting appointment just to tell me I need XYZ tests to see what's going on then following up after. Seems like a drawn out way to approach the problem of your patient who is experiencing severe pain.
I'm also wondering if a revision bariatric surgery, maybe gastric sleeve ( if it's even a possibility ) instead of my maintaining my current Roux en Y status, would be helpful to restore absorption and alleviate malabsorption/malnutrition issues before permanent damage to my other organs occurs if any haven't already occurred. Anyone's thoughts on that possibility would be appreciated?

So sorry you're going through all this. I can only input that an ERCP is both a diagnostic and curative procedure. ERCP should have revealed chronic pancreatitis. Did they happen to do an MRI for you? It might be another stone forming.. I really hope it is not chronic pancreatitis.
Once again, sorry for your pain..

[Middus 491]

Furthermore, I think the surgeons might want to fix the primary reason for the malabsorption first before considering a revision.