Pancreas Divisum

Posted , 8 users are following.

Hi, does anyone have experience with pancreas divisum?

I have just received my recent MRI and MRPC report through the post saying I have pancreas divisum. Everything else with the pancreas looked normal.

I'm a bit bewildered ad I haven't seen my consultant yet. Although I've been suffering with pancreatic pain and symptoms for two years all previous scans have been normal (US, CT, MRPC & EUS).

I'm already on Creon as some degree of exocrine insufficiency was already established. No alcohol at all for two years. I take amitryptiline for the pain.

I don't know whether to be relieved nothing worse has been found or fearful for future attacks. I've never had a full blown acute attack but a few bad flares that have taken me to hospital and daily pain from mild to severe. It's been relatively stable since the first bad flare two years ago when I Iost a lot of weight and could barely eat or do much else for months. Don't want to go back there.

I've heard mixed views on surgery for divisum. Wondering if I should pursue it to prevent possible future attacks and pancreatic damage or not risk it?

Any thoughts or support welcome. I'm just trying to make sense of this diagnosis.

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8 Replies

  • Posted

    Hi if you are on Facebook please join 'chronic pancreas support' group they will answer all your questions day or night and as people from all over the world are on it. I found it extremely helpful (I'm Not diagnosed but I've had upper left pain for 7 years so always feared pancreas) so many people with all different pancreas problems are on the group and they are so helpful.

    Wishing you all the best.

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  • Posted

    Also how was this missed on other scans? I thought divism is something your born with not something that develops but I'm obviously wrong! Made me worry now as I've read some of your threads and we have similar symptoms. All my tests over 7 years have been clear but I haven't had any scans or tests for 2 years now as I've given up pestering them!

    Does your scan now mean you have chronic pancreatitis? But you have never had acute attack, I haven't either. I also get no vomiting or loose, pale stools. In fact I'm usually constipated.

    I do get panicky and palpitations with hot flushes when I get my flares which are always upper left front and back, stabbing, gnawing, prickling, cramping, bruised feeling....all types of weird pains.

    Always worse after alcohol. I'm also on amitryptiline and I notice it's worse if I stop taking them.

    I'm now wondering if I should beg for repeate scans as I'd just tried to get used to the fact that maybe it is ibs and gastritis. Can't seem to get pancreas worries out of my head though.

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    • Posted

      Hi Natalie,

      Good to hear from you. I remember you on this forum before, there have been a number of us on here with ongoing symptoms but clear scans. I haven't posted for ages.

      That's exactly what I want to ask my consultant when I see her - how come the divisum did not show up before? I've heard it's not always easy to see and that US and CT scans can miss it but what about my MRPC (with secretin) and EUS last year? Divisum IS congenital so it must have been there.

      There has never been and still isn't any scan evidence of me having CP but obviously I'm concerned that if the divisum is hindering enzyme flow and causing pressure and pain how long is it before damage is done or a worse attack occurs?

      I've been on the amitryptiline for nearly a year and the pain has improved a lot, enabling me to do much more. But it's still there every day and some days (like today) worse than others.

      I'm a bit annoyed I received the radiologist report today before seeing a doctor as I've had nobody to medically interpret this diagnosis that I've been waiting two years for.

      Anyway, are your symptoms still stable? Are they daily? It sounds like you are doing all the right things and shouldn't be overly concerned. I'd had all the scans but insisted on a re-scan after a year as the symptoms were stable but still constant and unchanging.

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    • Posted

      Yes that's terrible that you have no one to ask questions to! I would also be annoyed. I did have a detailed MRI of pancreas with dye 2 years ago and nothing was seen. They specifically looked in detail at my pancreas as that's what I was concerned about but I still can't help worrying something has been missed.

      As its been going on over 7 years and I've continued to drink (cutting down a lot, only drink socially now) I'm thinking I would of had some kind of acute attack by now. My symptoms are always mildish and I can cope at home with them by resting.

      Please let me know what your consultant/GP says about the findings.

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  • Posted

    Hi Ruthie....sorry to hear you're struggling too. Your story is almost identical to mine which is quite extraordinary and helpful to know as sometimes you wonder if it's all a bad dream!

    If you have a look at my post 3 months ago headed "Pancreatic Divisum advice needed please!" you'll see my story plus some great advice given, especially by Reefsider. You'll see my last gastro point blank denied PD causes abdominal pain, which is something that flies against all the literature I've read. I suspect she said that to dissuade me from having an invasive procedure like an ERCP, even though I've said that would be a last resort as I know it can cause acute attacks.

    My divisum wasn't picked up by MRI, but was finally seen on an MRCP, and like you everything else looks normal. That's not to say it is though as it can be difficult to see if there's problems with the tiny papilla that most of our enzymes drain through. I have fatty acids and neutral fat showing in tests, though normal elastase.  I haven't had an EUS and am now trying to find a pancreatic specialist who can advise me on the next step.

    I'm on Palexia ( opoid) for pain, and have cut down to the minimum, so like you still experience daily pain that varies from nothing to severe. The biggest help has been going on Creon, a strict low fat diet and no alcohol. But it's still difficult! 

    Unfortunately in this whole process, after exploratory surgery, I was also diagnosed with another very rare small bowel condition, so that's complicated us trying to find the cause of the pain. Fortunately I've got an amazing GP and great dietitian, as it's been a real battle to get this far. Knowledge is power though!

    From what I've read surgery doesn't help people with PD and chronic abdominal pain, where blocked ducts are not shown up. I'm 2 &1/2 years into this now and it's scary to think it's always going to be this bad!

    Please keep us posted, big hugs 

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  • Posted

    Hi Ruthie49,

    I've had chronic ideopathic pancreatitis for 18 years.  Yes, I said 18 years. My story is a sad one.  I've had all of the tests, most of which come back normal.  I went through Stanford and other local hospitals, all in search of answers. 

    Stanford did find out I have pancreas divism.  I have 2 pancreas 'buds.' One of which is big and long with a permanently blocked and non usable duct. The other bud has a working duct, but it's too small to put a stint in (to make sure it works).

    I've lived with the 24 hour-a-day pain for these past 18 years.  It got so bad the er docs thought I was a druggie because of asking for pain meds. I have never done even recreational drugs.

    Thankfully, after my time at Stanford and the other local hospitals, I found an amazing pain mgmt doctor.  I also have an implanted intrathecal pain pump.  It's where my appendix used to be, in my lower right quadrant of abdomen.

    The pump's batteries are changed through surgery every 7 years.  I'm on my 3rd one now (the other two had to be taken out after only a few years each).  There are 4 I.V. medicines inside that are compounded and are flowing 24/7.  There is a tube from the pump to my spine, where it is screwed in.  The pump meds then go to the area of my stomach and pancreas nerves. 

    There are almost no side effects because the pump meds don't travel to the brain.  I also have a Medtronic "Personal Therapy Manager" which I call the 'wand.' I put it over the scar of the implanted pump and it tells the pump to give me more meds for a short period of time. 

    When I got my first pump, there were only 2 medicines in it.  Now there are 4.  I used the wand about 16 times in 24 hours.  So I know pain and pain management.  My pain mgmt doctor says I'm handling the pain and managing the pain meds really well.

    Living this way is hard, but I don't have a choice.  I am a Christian and believe the Bible when it says "All things work together for good for those that Love the Lord." I think that's how that verse goes.  Thank you and the others for your posts. I find them encouraging. I'm happy to answer any questions any of you have.

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  • Posted

    I was recently diagnosed with PD. I was also diagnosed with: henrnia, ulcerative colitis, diverticulitis, congenital pancreas in stomach, and my kidneys failing. I have taken uceris for the colitis, and had to stop taking it. I was told I needed a colonoscopy, Before my PD diagnoses. I believe I almost died that night from drinking the prep. It required two shots of morphine to calm the pain. Be safe! Foods And Common over the counter meds, are very bad for this! I stopped Tylenol, 20 years ago, on a hunch. Best thing I did besides stop drinking, also years ago. Read read and then read. I have an emergency appointment this wed. I will post my suggested treatment when I know. Also, I was punched in the stomach many times. This scars the pancreas! I wish you the best and will post again soon.
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  • Posted

    Hi Ruthie49,

    I'm actually glad I found this forum … In July 2016 I started getting horrible abdominal pain that radiated to my back. I do have a nerve disease, herniated discs, thyroid disease, and a few other conditions therefore I'm used to pain. When the abdominal pain started the pain was so intense it was unbearable! I had an ultrasound, endoscopy, blood work (tested for pancreatitis) all come back normal. I then had a CT Enterography with contrast which revealed atrophy of my pancreas (irreversible degeneration which is normally associated with chronic pancreatitis). My primary doctor even told me she didn't see anything causing my pain until I told her atrophy is associated with pancreatitis. I then saw a GI specialist who performed a MRCP and found I have Pancreas Divisum. I was advised by the specialist PD can cause chronic pancreatitis. I was also advised once your pancreas is damaged enough then your blood work won't show anything. It took the doctors almost a year just to find out I have PD. The doctors also think I may have gastroparesis (slow digestion of food). I lost a lot of weight, however I don't have the vomiting, diarrhea … just a lot of nausea and pain. I now have to see a pancreas specialist and not just a GI specialist. I live in the States so our healthcare system is different. The pain can be unbearable as well as the nausea but all you can do is take one day at a time. I'm allergic to digestive enzymes but I'm on Reglan to help me digest food. I've never been diagnosed with acute pancreatitis but I've looked over my past blood work from prior hospital stays and I think they might have missed it due to my other medical conditions.

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