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Chronic Pancreatitis possible? Or is it something else? Struggling to find answers

Posted , 24 users are following.

ChristineB12
ChristineB12

Hi everyone- like a lot of you on the forum, I am at my witts end trying to figure out what ailment and/or disease I have. To be brief, my symptoms started in August of 2014 when I started to notice upper abdominal pain and tenderness. This was on a weekend where yes, I had been consuming alcohol. I am a healthy 28 year old female and in my younger 20s I did drink more than is recommended. On the onset of symptoms, I went to a doctor who prescribed an anti-acid. I noticed over the next few months my symptoms came and went and I honestly thought nothing of it. I started noticing a change in my bowel movements in October/November (they started to become more loose, float and were more volumous). I have been into see multiple GI specialists who have run a million tests. I've had basic labs done (liver function tests, lipase/amylase, basic metabolic panel, IgA/IgG- celiac seriologies, Vitamin D/B12, Iron studies-- all came back good), an MRCP w/secretin (good), RUQ (good), EGD/EUS (good), fecal elastase > 500 (good)..... but heres he kicker.. a 9g fecal fat (normal is under 7g) with a fecal weight of ~470g (200g of stool is normal output from what I have read). To my knowledge there are only a few diseases that cause a high stool fat and CP is one of them. 

My question is.. do any of you experience high fat stools and normal imaging? The doctors seem to think this is all IBS but from what I've read IBS  does not cause high fecal fat. 

I am so desperate for answers... I wish they would just find what is causing my discomfort and abnormal stools-- even if that meant a diagnosis of CP. 

Please help if any of you can shed some light here!!!! 

1 like, 55 replies

55 Replies

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  • Gem1384
    Gem1384 ChristineB12

    Posted

    Sorry about the multiple replies! Lol!

    It kept saying a problem has occurred and try again!

    Now I look silly! Lol!

    • ChristineB12
      ChristineB12 Gem1384

      Posted

      No worries at all 😊

      I hope you are able to get to the bottom of your problem! Keep me updated if you end up going for an EUS or HIDA scan!

      I have a follow up with my GI in a few weeks but when I called the office today his physician assistant confirmed that they found absolutely nothing wrong with my pancreas (0 criteria out of 11) so that's good news! It still does not explain my stools or my abdominal discomfort 😩

      I'll be sure to post if anymore testing is done!!

      Christine

    • ChristineB12
      ChristineB12 Gem1384

      Posted

      Did you ever get another fecal elastase done? I am going to ask at my follow up appointment to get another one tested (along with other things --> split fat vs neutral fat, rifaximin for SIBO, etc). I will keep you updated on what happens. Praying for the both of us!!

      Christine

    • Gem1384
      Gem1384 ChristineB12

      Posted

      I did get another one done and it was 480 still good and up 10 from my last one. All bloods still normal. Consultant still thinks IBS! The pain has gotten worse the last week or so to unbearable. Paracetamol and ibrofen don't even take the edge off. It gets so much worse after eating and having pooh seems to make it worse! sad I saw my dr and he said that the area that's hurting and that he was palpitating was my left kidney. He checked my urine. It's normal but it really hurt. At least he knows I'm not making it up! He's put me back on omperazole so gonna see if that helps!

      Let me know how you get on!

      Gem

    • ChristineB12
      ChristineB12 Gem1384

      Posted

      Hi-

      How long has this been going on for? I can't remember what you said in your first message to me. I also have pain near the left kidney which I have read is common for CP given thats where the tail of the pancreas lies. I am so convinced I have CP which just hasn't been diagnosed yet. I think I am going to ask my doctor if we can repeat a fecal fat with me on enzymes and that will show something isnt right with my pancreas. I am so scared sad I just wish it would all go away!

      I hope you feel better!

      Christine

    • Gem1384
      Gem1384 ChristineB12

      Posted

      Hi Christine,

      How are you? I've just returned from a week in Spain. Was lovely to get away but my pains really got worse sad

      Just before I went they got really painful Dr think nervous stomach so has put me back on omperazole. Not working as yet.

      I've had my right sided pain for just over a year. My left sided pains which started in my back started in October 2014. They've progressively got worse from being mild and every now and again to now pretty much constant and so bad after I eat especially under my ribs at the back and in my upper shoulders. I am getting bad epigastric pain.

      All Drs and consultants say IBS. I'm taking colfac and peppermint capsules not working. Paracetamol and ibrofen arent working.

      The pain kicks in after about 20mkms of being awake. The pain on my left side is now worse than the pains on my right. It used to be the other way round.

      I am getting so sick of hearing its IBS. If this is IBS then why when I research it does it say pain from IBS doesn't radiate into the upper back? Weightloss shouldn't occur? Undigested food happens rarely?

      These are all "red flag" symptoms.

      I asked my consultant for more tests she refused and my dr is now refuses more tests as everything is normal.

      Let me know how your getting on.

      Gem

    • ChristineB12
      ChristineB12 Gem1384

      Posted

      Hi- I am getting along all right. My pain has been pretty much the same for a while now. I havent had to take any pain medication (as of yet, Thank God) and most of my discomfort I try to maintain with my diet. 

      I have had pretty much every test there is for CP (ultrasound, MRCP, EUS, fecal elastase) so unfortunatly I dont really have any other test options. The only other test I could do is a direct pancreatic function test but only a few centers actually do those and I dont think they would even be willing to do that given all of my imaging and fecal elastase is normal.

      I meet with my doctor today to discuss other treatment options and maybe to do some more stool testing to figure out where I am not absorbing (he keeps thinking it could be small bowel related, however if it were small bowel related, I would think my vitamin labs would have been low too, just not fat in my stools). 

      I am honestly just trying to live every day like I dont have anything wrong with me and really just trying to live every day to its fullest. It just sucks because I am so young (only 28 with no kids)... my husband and my friends are all still going out all the time and enjoying dinner and drinks and I feel like they don't understand that I dont feel well and I really cant be drinking any alcohol or eating anything too fatty. 

      I have a follow up doctors appointment today so I am hoping he might be able to do a few more tests to figure out what is going on. I also have an accupuncture appointment later today and I am seeing a Naturopath next week. Yes, I am pretty much going to do some non conventional treatments to see if it helps because traditional medicine has only ruled things out for me and not really done anything to help (lol)

      Have you self refered yourself to a doctor that specializes with the pancreas? That is really how I got them to do more tests on me (like the EUS). 

      I hope you start feeling better soon. I'll let you know if I get any good information today from my doctors appointment! 

      Christine 

    • Gem1384
      Gem1384 ChristineB12

      Posted

      Hi Christine,

      How you getting on? Any more developments?

      I've got my EUS next week and I am petrified! Not of the endoscopic part of it, but of the results! I also don't want sedation but I think I have to have it. They also agreed to HIDA scan and a seCat scan. They are in September. So I'm getting the tests I want finally. They no longer do faecal fat test so wasn't allowed that. I have put on weight so I'm happy with that. Although my pain is bad today and has been the last couple of days.

      Anyway, thought I'd just check in and see how your doing.

      Gem

  • j30542
    j30542 ChristineB12

    Posted

    HI Christine; try not to panice. Alcohol is toxic to the liver; so are crisps; if you have ever heard of fatty liver issues ? Untreated liver issues, causing BILE issues; and trouble digesting FATS is one of the first signs (as well as right side abdominal pain).. So you need to 'clean' up and test your bile.  (if only to rule this out).

    1. Take briefly bicarb of soda; to calm your stomach acid down/ bile. if htis works then you need to get a ppi from teh doc.

    2. Tkae milk thistle - this has clinical data to show that it repairs liver cells (liver processes cholesterol which makes the bile.

    3. take psyllium husks - it's Secondary function is to assist with bile.

    4. Take a digestive enzyme supplement from the health food shop (Q10 or something else to assist with teh digestion of fats presently until the situation is resolved.

    5. improve yr vitamin intake and diet - take anti-oxidant and anti-inflamatories - natural sources are good - you need FIBRE AND VEGETABLES.

     

    • ChristineB12
      ChristineB12 j30542

      Posted

      Hi J30542-

      I am trying not to panic but its extremely difficult not to do when you think you have CP. I do realize that alcohol is toxic to the liver (I have completely stopped drinking all together).

      How do I take bicarb of soda? I am not familiar with this... and what do you mean if it calms down my stomach?

      I will try the psyllium husks and the digestive enzymes as well. Thanks for your input.

      Christine

  • Larry89
    Larry89 ChristineB12

    Posted

    Thank you to Christine and everyone else who has contributed to this thread.

    I am 26 years of age and started to feel LUQ (left upper quadrant) discomfort right below the rib, and very minor mid back discomfort (parallel to the location of the abdominal pain) around 6-7 months ago. This discomfort feels like somebody is stinking a finger there, it's not a sharp, stabbing pain. I dismissed it for a while, but this dull discomfort had remained constant and had somewhat progressed to a higher level of discomfort (but it's still bearable to the point where I can function and work). My bowel movements have changed as well. Stools seem to be orange/brownish in color, soft in texture (lacking shape), they sometimes float, and they leave a very subtle oily film and a very small amount of bubbles on top of the toilet water, which be seen with a flashlight. Fatigue and weight loss have also set in. I have lost around 8-10 lbs since my last severe flare up which occurred after eating a very fatty/oily meal, (which I regret, because it caused a very painful flare-up that lasted for about an hour). My appetite still exists, but I get anxious of what and how much to eat due to the intense flare-up (which could also factor into my weight loss). I also had a major flare-up in the left abdominal area after playing an intense game of basketball with my friends. All of these symptoms seemed to point towards a pancreatic disorder such as pancreatic cancer/chronic pancreatitis after doing some research on the internet.

    After discovering that it could pancreas related, I decided to consult a GI doctor, and she advised that I should take several tests to see if my claims had any real logic or substance. I took a H Pylori breath test. I will also be taking a Lipase/Amylase blood test this weekend along with an Ultrasound. I even checked myself with a diabetes testing kit that I bought from a pharmacy to see where my glucose levels were, since high glucose levels is a symptom of a pancreatic disorder. They came out normal. Hopefully my bloodwork and Ultrasound will reveal similar results.

    I've read in other forums that the calcification of the pancreas can be somewhat mediated by taking care of a Magnesium intake deficiency. I tried taking Magnesium tablets for about a week to see if they would alleviate any discomfort, but they did not help so far. I will continue taking Magnesium for another month or so just to see if shows any results.

    I will keep you guys updated with my diagnosis, best of luck to all.

    • Larry89
      Larry89

      Posted

      I forgot to mention the detail that I drank copiously in my early days as well. I had flare-ups due to alcohol compsumption in the last 4 months or so. I have quit alcohol entirely a few months ago. I also used to smoke cigarettes in my teens, but have quit entirely around 5 years ago.
    • Larry89
      Larry89

      Posted

      I've also decided that I'm going to beg my doctor to prescribe me to an abdominal CT scan if the discomfort persists. It seems to me that CT scans do quite well in diagnosing pancreatic disorders from reading endless amounts of articles/forums/etc.
    • Gem1384
      Gem1384 Larry89

      Posted

      Hi Larry,

      Just wondered if you have got an update? Have you had anymore tests?

      Gem

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