Pancreatic Divisum advice needed please!

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Hi...After 2 years of worsening chronic URQ abdominal pain often after eating, malabsorbtion of fat, weight loss ( stabilised now), nausea, and periods of diarrhea, I've finally been diagnosed with Pancreatic Divisum. Thanks to a great dietitian and GP I've started Creon and low fat diet. I'm still waiting to hear from my gastro and it's been over 2 weeks since the test. For some time I've been on Palexia which helps with the pain, but it can still be really hard. I suspect I've had periods of chronic pancreatitis but have never suffered from vomiting. Does anybody anyone else have PD, and do they have these symptoms without pancreatitits? Am so happy to find this forum!  

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  • Posted

    Hi I don't have any advice for you but if your on Facebook join 'chronic pancreatitis support group' so many people on there they will reply to your posts straight away with any questions you might have.

    All the best.

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  • Posted

    You are a rare bird Veeanne, most who have PD will never know because they don't ever have symptoms, others like you suffer pancreatitis symptoms. I don't have PD I have Auto Immune Chronic Pancreatitis but I've done some reading, as you probably have.

    Procedures to do with the pancreas are risky, some are sorted but some people continue to have problems, there's no guarantee a procedure will work, or work longterm, you've only to read some of the stories in this forum to learn that.    

    Wait until you hear from your gastro and discuss the options but don't forget there's not much known about PD so you'll probably encounter caution. 

    Regardless of the reason, you have pancreatitis, there's no getting away from that so you have to learn to live your life accommodating it.  Even if you have a surgical procedure, like getting a stent, and it works and your pain disappears completely, you'll still have to live as though you have pancreatitis.  There's no magic when it comes to the pancreas, that I've found yet anyway.

    A low fat diet, no alcohol or cigarettes, sufficient fluids, Creon, painkillers when required and responding to an attack quickly is how we with pancreatitis live.

    Welcome to the family Veeanne, there's a good bunch of people here with a lot of helpful tips based on their experiences.  Let us know how you're going.  regards Reef

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    • Posted

      Thanks so much Reef...your message was calm, informative, and compassionate...and funnily enough, reassuring.

      It's confronting having this stretching out ahead, but after reading some stories I think I'm one of the fortunate ones, and I'm determined to try and prevent any deterioration.

      Your advice re pancreatic surgery is spot on. Having had some medical training way back, I understand some of the literature ( and lack of it!), and it's clear pancreatic surgery can be fraught with complications. I've also had quite a bit of surgery, and hospitals are my least favourite places.

      I had to laugh when you called me a rare bird, as this comes on top of some other issues. Haemochromatosis, Percarditis and Blue Rubber Bleb Nevus Syndrome ( no, it's not a joke!)...discovered when they

      operated to find a cause for my abdominal pain. Really, you have to take a deep breath, smile, and just get on with life. Although I'm about to go on a long overseas trip to see my son, and I think that'll be a challenge...not being able to get travel insurance for this is a bit scary!

      I'm sorry you have Auto immune CP...that must be difficult even if you have a regime organised. I hope things are not too bad right now. 

      Once again...a big thankyou! I will definitely post my progress.

      Cheers, Veeanne  

       

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  • Posted

    Hello, I also ha PD, and suffer with pancreatititis. I recently tried 2 different procedures at the Cleveland Clinic. One to open up the duct, which they were not able to find, and I ended up in the hospital for 3 days because the Dr, accidently punctured my stomach as she was removing the wire, and the Celiac block, which did not take, and that was done on June 15th. My pain is unbearable, I don't know what to do anymore. I can't eat, problems sleeping, I cry everyday. I don't take anything for the pain, as no one seems to think I need any, or that seeing that I have been suffering for over 2 yrs that I can deal with it! I just signed up and I seen your post about PD. I hope I can find answers here or comfort. I was diagnoised with PD February 2014, as they did more test October 2014 I was diagnosed with Rectal Cancer, I'm good now with that!! But still suffer with pancreatic pain. Thank you for listening!

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    • Posted

      Hi Jill...sorry I couldn't reply before.

      I'm really sorry to hear you've been having such a tough time...your experience with surgery sounds just awful and would certainly put me off having any. Although of course it depends on each person's circumstance. Why did they operate... did you have a blocked duct??

      I'm surprised that you weren't offered any alternate pain relief if they were willing to give you a celiac block. Sounds like you need to find a new supervising doc as it's so important to have a supportive team.

      I'm on Palexia slow release ( Tapentadol) and although it's an opiod, it's a relatively new one and I have practically no side effects. I'm not pain free though, so I occasionally use a panadeine extra as well for times I can't work through.

      Can you be referred to a pain clinic? I don't live in the states, but I know you do have them. I go to one and have had a few sessions with a psychologist to learn tips to deal with pain which have really helped. Fortunately I don't get depressed which helps. There are also good pain books around. But most importantly you need to get some pain relief as the stress will just be making things worse. A heat pack can help too.

      Are you on any enzymes and a low fat diet? Keep a pain/food diary and a record of your pain on a scale of 0-10, morning and night and you may be able to work out what foods should be avoided. It's also good to show to your doc too, to demonstrate your pain levels.

      Good luck, and stay in touch...best wishes,Veeanne    

       

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  • Posted

    Hi all...just an update to say I finally had a call from my gastro. I was stunned when she said she didn't believe Pancreatic Divisum causes abdominal pain! I knew there was controversy about whether it causes CP but practically every article I've read mentions abdominal pain, or pancreatic type abdominal pain as a symptom. She has surgeons sending her patients with PD and abdominal pain, wanting ERCPs etc...invasive tests that I certainly wouldn't want. So I see where she's coming from, but denial puts me in a limbo position, especially when all the symptoms point to some involvement of the pancreas, and I'm responding to enzymes and low fat diet. Feeling depressed.... and a day of hideous pain after eating salmon last night doesn't help. Any thoughts anybody?

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    • Posted

      So sorry to hear the response from your gastro Veeanne.  Honestly I'd be finding out who the best gastro person is who actually specialises in the pancreas and getting a referral.  Sack this doc!

      All the reading I've done states that severe pain can occur even when doc's can find no glaring reason.  She's actually telling you that you're lying, sooo disrespectful!  And to not even want a conversation about pain control methods (other than invasive procedures) makes me question her skill.

      This is not a you thing Veeanne so don't go there.  Don't allow this incident to cause more stress which can exacerbate the pain and symptoms.

      All I can suggest, given you appear to be doing the right things, is give your pancreas a rest, take very little food and drink, clear broth that sort of thing for a couple of days and see if it helps.  Do you have a GP who knows you well (knows you're not attention seeking or after drugs) who might prescribe an IV for a couple of days so you can give your pancreas a complete rest as well as some pain relief? 

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    • Posted

      Thanks Reef...had a bit of a cry when I read your note...you're so right. All a patient needs sometimes is just validation of their condition. And it can be quite a strain trying to lead as much of a normal life as you can, dealing with pain and nausea etc, and hiding it often so you don't worry family or friends.  

      Thankfully I do have a fantastic GP and I have an appt to see her tomorrow to get extra meds and a covering letter for when I travel Saturday week from Sydney to Seattle to see my son. I've been terrified about getting sick when I'm away and so my positve response to the ennzymes was really encouraging. This setback has been a good lesson in how I have to be so careful with what and how much I eat...it's a real learning curve. The closest thing to our diet when flying, is to request diabetic food, but I think I'll just nibble! Do you have any tips for travelling?  

      I am on Palexia for pain, but it doesn't really touch the sides when it's bad. I could up the dose, but it's an opoid and I don't really want to. I don't get any bad side effects but I'd love to get off it as soon as I can.

      You're right too about finding someone who specialises in the pancreas. I was 8 years being diagnosed Haemochromatosis so suffered more damage...and that could have found with a simple blood test. I'm determined the same thing won't happen with this!

      Hoping you are OK, and thanks again!  

       

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    • Posted

      Me again wink Make sure your GP gives you enough Palexia for the whole trip even if you don't think (or hope) you won't need to take it all the time, they're a bit leery of opioids in the US, and if you have to go to an ER over there you'll probably not be prescribed any.  And get the prescriptions filled here before you go. Oh you'll need to take out a second mortgage if you need hospitalisation over there so fingers crossed you'll be fine (only half joking).  I feel like I'm your Mum lol, how long will you be away?

      You do the best you can already I think, I used to travel a lot, not since this diagnosis however my digestive system is too unstable.  Eat small and often and introduce lemon juice every day to reduce acid.  Squeeze lemon juice into your water bottle, not so much that it's a lemon drink.  I squeeze juice over my steamed veg every day and salads and when I cook chicken breast, fish etc, so everything lol. I dislike food without it now.  Have a wonderful stress and pain free trip.

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    • Posted

      Haha, yes I've got all my meds to take, plus doc's letter, all $180.00s worth!! It's so expensive being crook, even with medicare and private insurance!  I'm away for just over 3 weeks.

      Palexia is prescribed for me on a regular 2x day, so it's not something I can just abruptly stop. I'm going to hopefully wean myself off it when I get back though.

      Thanks for the lemon tip, I never knew it reduced acid. Green tea with lemongrass is my fave in the morning, and lemon squeezed into mineral water is my sad replacement for a glass of wine lol.

      Have had a good last few days, so I'm excited now. Thanks again, and hope you're good too!  

       

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