Pancreas & Kidneys?

Hi everyone! I'm back with another question. As I explained in my last post, I have a large amount of awful symptoms - many of which are debilitating and as a result, have left me at home all day, everyday, in bed, unable to work - it is highly suspected that I have SLE, as my symptoms match up & others in my family have it. I've been unofficially diagnosed but am unable to get a solid, official diagnosis as I'm not able to receive healthcare at the moment. i do hope to soon, however.

But, after reading some other posts, I saw a mention of issues with the pancreas. A few years ago, maybe three or four, I came down with my first bout of acute pancreatitis. This required weeks long hospitalization, feeding tubes, the whole bit.  This then began to happen regularly, ever couple months or so, I'd be back in the hospital with another bout of acute pancreatitis, each time being near death (which was quite scary). After around a dozen hospitalizations (each being a week or two long), it turned into chronic pancreatitis and I'm left with a large chunk of my pancreas being dead. Luckily, it's been mostly okay for a while. My issue is, when this was happening so regularly, I never received an answer to what was causing it. I wasn't doing too much to help at the time and the doctors would just say "I don't know." or "I have no idea, must be just something wrong with your body" - I should mention, when this was happening I was in my early 20's, which made it all the more confusing why I developed chronic pancreatitis. Now that I've discovered SLE and have a possible diagnosis, i am wondering if it is possible that the issues with my pancreas are related. It is unfortunate that my doctors did not care to look into the cause, but rather just feed me pain killers, and now I am hoping to figure it out. I still have some issues with my pancreas, however, they have not been life threatening lately. Is it possible that these things are related? Has anyone else experienced anything like this? 

And just as a side note, I've also struggled with problems with my kidneys & am prone to kidney infections and other problems. The doctors also didn't care to look into, or let me know, why a seemingly healthy woman in her early 20's would experience this, either. Could this be related as well?

I try not to let myself attempt to connect everything to SLE, though it can be easy to do, but I continue to be bothered by the fact that I have no cause for these rather important issues. I am also realizing that I must have terrible luck with doctors! Thanks in advance to anyone that can help and share some insight! I appreciate you all so very much ♥♥♥

5 Replies

  • Hi,

    I am seronegative so have normal bloods but am suspected as having some kind of autoimmune disease in the Lupus, Sjogrens spectrum.

    I developed chronic pancreatitis about ten years ago after many many years of being told it was IBS when the other symptoms were worsening too including frequent UTIs and kidney infections. They have always associated the pancreas problem and the Sjogrens with me. My pancreas is thankfully still functioning but I have pancreatic insufficiency and can't digest protein.I did have a pancreatic sphincterotomy which definitely helped it drain.

    I take many Creon pancreatic enzymes with each meal and also Ursofalk a bile acid . Those two things help a bit but the main help has been from the steroids I have been on for four years or so.

    Have they tested your blood for autoimmune pancreatitis yet? And also IgG4 disease, it is associated with it too.

    Sounds as though they should be looking for a cause for all this.

    I am 62 but I can think back and recognise a few episodes of pancreatitis I had as a child that went unrecognised. I had to steer myself to the right doctors or I would have never ever got diagnosed.

    Good luck with making progress. X

  • Hi Cuttysark! I am so sorry to hear what you've gone through! Pancreas issues and pain are so awful, I wouldn't wish it on anyone! As far as I know, I have not been tested for either of those! There honestly seemed to be no interest in finding a cause to my pancreatitis. I think my hospital stays had become so routine that nobody really cared to do much about it besides taking care of the episode and suggesting I visit a pain management clinic for the rest of my life - which is really awful. This is making me even angrier with my doctors now! I'll certainly be sure to look into what you've suggested, as well! Unfortunately, I think you're right about doctors, and that I will need to be a little more picky about who I see in the future. Thank you again! I appreciate your help very, very much ♥

  • Hi I have chronic pancreatitis too but not as severe as yourself.I have had a few attacks over the years but docs never checked it out.It was only in the last few years when all this lupus stuff came to a head I was sent to gastro.It doesn't seem to be causing much trouble now thank God.He said I didn't need immunsurpresants for it but I would in a few years.This was all even before I saw the rhuemy.I now have chronic pancreatitis, Raynaud's lupus and all sjogrens dryness.Had a load of bloods taken yesterday for rhuemy I think he's now thinking things are worse than he first thought. What a job my veins kept collapsing but the nurse got the 8 viels eventually.Will see what results come back if any as he doubled my plaquenil. I have read lupus doesn't usually damage the pancreas but Sjogrens does.I believe doctors don't always tell the patient a lot of things it's so frustrating as you know.

  • Hey! Thank you so much for your reply! Sjorgens is something I haven't been very familiar with as it's never been brought up to me before - and it's kinda sounding like it should have been! In fact, I'm going to make a note of this so that I can bring it up whenever I get to see the doctor again! I really appreciate your insight on this. As sorry as I am that you've had to go through this stuff, it's feels really great to hear from someone who has been through similar things and can offer some insight. It really is frustrating with doctors, you'd think they would care to look into or let me know why such serious medical issues are presenting themselves! I do hope all your blood-work comes back okay & that things aren't getting worse! It sounds like you already have it tough enough, as it is ♥ Thanks again, Circles! You've been a great help! 

  • You are welcome. Ask about the sjogrens and hopefully you might get some answers.I have what I know now was very bad pancreatitis pain,sick and lost weight but by the time I saw my gp she sent me for a  scan but not of the pancreas and that was years ago.I'm still learning about all this auto immune stuff but I believe the GPS don't know much about it and tend to fob you off.Only for Lupus UK I would still not have a clue and of course my rhuemy.Keep asking questions good luck.Circles xxx

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