New onset of epigastric pain...don't know where it's coming from

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So, I'm back...unfortunately :-( after my stay at the hospital where all my results came back normal, despite all my symptoms poiting at pancreas, I started taking sugestive enzymes and I had about a month of relief - less pain, better digestion, etc. However, some 2 weeks ago, I started having GI problems all over again: onsets of strong epigastric pain, had diarrhea for about a week, gases, now I'm starting to get back pains again. Don't know what to do and don't know what's causing the pain. I had really everything done at the hospital: MRI, MRCP, CT, EUS, colonoscopy and endoscopy, bloodwork...you name it. Everything except HIDA scan. Don't know what to do to help myself...please suggest if you have an idea!

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  • Posted

    Lol...it's digestive enzymes, not sugesting! Creon it is!
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  • Posted

    Hi Dreamy,

    Sorry you are still suffering sad

    I'm still in pain every day too sad

    I got horrendous epigastric pain and the omperazole did help. It didn't help my other pains and I still get epigastric pain but it's stabbing rather than aching and pressure.

    Can I ask how you got creon? I've been begging for it and as my tests are "normal" they are refusing to let me have it.

    Have you had an EUS yet? My hida scan showed my ejection at 30% but my GI doesn't want it out as she doesn't believe it's the cause of my pains. Even thou I have gall bladder attacks and I have sludge!

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    • Posted

      Hi Gem, I'm sorry you also are suffering :-( I got a prescription for Creon, but I found out afterwards that in Norway you can get it without prescription as well :-)

      I did get an EUS and it was normal. Doctors suggested a possible pancreatic insufficiency in my case.

      But where is all the pain coming from all of a sudden...if everything is normal?!?!

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    • Posted

      Yeah I'm sick of hearing everything is normal. They still day the pain is IBS but it's definitely not IBS. The pain is too high and too Specific for IBS.

      I really want to try creon. Even just a trial to see if it helps my pain and digestion.

      What were your feacal elastase results? That shows pancreatic insufficiency. I get pain in the morning, when I eat, after I eat if I eat too much fat and too much food. Then the pain lasts for hours and doesn't get any better with normal pain killers. The amitriptiline seems to be keeping the night time pain under control at the moment so I am able to sleep.

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    • Posted

      Hi Gem,

      How are you today? I'm having a rough day with it all and it's hard to stay calm!

      I think the last time I posted I was about to see the pancreatic specialist... Well, she took one look at my clear scan reports from earlier this year (MRPC, EUS) and said it wasn't CP. I said, but isn't it really hard to detect CP in the early stages? She said yes, but they cannot diagnose it without scan evidence so in her view I don't have it. I explained all my symptoms. She was quite sympathetic. She conceded that it might be a pancreatic dysfunction like SOD and offered me Botox injections into the sphincter to see if it would help (this is her area of interest and study). This seemed a little hasty from someone who had to be persuaded that thepain was pancreatic at all, but I am prepared to consider it, even though we have no firm evidence of SOD. I am seeing her again in a few weeks so I will keep you updated.

      She started me on 10mg of amitriptylin but it made me groggy so I've been cutting them in half and taking 5mg. Did I read you are taking them Gem? Have you noticed any difference? I thought they might be taking the edge off the pain at first but these last few days have been bad, with more digestive issues and cramps as well as the usual pain.

      I hope you are getting some relief from time to time. How have things been?

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    • Posted

      Hi Ruthie,

      Nice to hear from you!

      Sorry still no diagnosis for you sad but this Dr sounds good! At least she's willing to try something! You'll have to keep me updated! I'll be very interested to see, if you do have it, if it works!

      My pains have been up and down. I can do everything right and still the pain flares up. I'm coming to the end of a bad flare up so I've come off the omperazole and reduced my pain killers. I seem to be ok just on the herbal tablets. Yes I'm taking amitriptiline. The first couple of months were hell sad really hard going! I was asleep by 9, drowsy when I got up! I took 5mg for 2 weeks then increased it to 10mg. I have to say. No matter how bad the pain I almost always sleep through it. I know the pain is there because when I wake to feed my toddler I notice the pain. But im able to drift back off to sleep afterwards. Give it a few months. It was at the end of month 3 I finally got used to it and knew when to take it. I take mine at 7, latest 8. 7 makes me tired for 9.30-10 and I'm not a zombie when I wake at 6:50. I do feel I am getting benefit from them otherwise I'd stop taking them. So try and stick with it if you can.

      I saw the pain management team a couple of weeks ago. The dr I see is lovely and really does care. He is going to try and help me. He didn't want to increase my amitriptiline as he said I'm a young mum and I don't need to be off my head. He has offered me a lidocaine infusion to see if it will stop the pains. I have to have an open mind. It has a high failure rate and can make you sick and dizzy. So for now I've agreed it. Once I've got a date I'll think about it some more. They've cancelled my apponitment to see the surgeon on the 1st dec it's now the end of December! I rang the hospital and tried to get it shifted but apparently it's been cancelled 3 times already by them and I have the next available slot sad

      Anyway, take care! Always on here if u need a chat! Let me know how you get on!

      Gem x

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    • Posted

      Hi Natalie,

      How are you? How's things?

      I'm doing ok, thank you. Things have been up and down. Gastro have signed me off as there's no more tests they can do. Pain is still there. I've come off the amitriptyline and swapped to nortriptyline. I've gained shed loads of weight sad I'm suffering with such bad sides effects now aswell but I need to stay on it because of my bone pain and vulvadynia. So I'm stuck at the moment sad

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    • Posted

      Oh no it's so frustrating when they sign you off! I'm pretty much the same, up and down. Been trying not to think the worst which helps. Still on my amitryptiline. Haven't been back to gp about any of it for a while now as I've given up on them finding anything! Although I have been getting a new pain mid left back which I was going to go about and get them to check my kidneys but it's just such an effort to get them to care that I've been putting it off!!

      My weight has stayed quite steady at the moment luckily.

      When I read that one of the ladies on this thread has finally been diagnosed with pancreas divism after clear tests before it kind of freaked me out but trying my best to think that it must be rare for it to be missed!

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  • Posted

    Sorry to hear you are still suffering with no answers.

    It probably doesn't help but I am in a very similar situation - my ULQ pain (front and back) is still daily and has flared even worse this week with awful burning, stabbing pains and cramps all over my abdomen. Feeling so sick and fluey too but I know it's not the flu.

    No closer to a diagnosis though. I try to live one day at a time and stay as positive as I can but sometimes (like today) I just don't know how to stand the pain and churning but also the not knowing what it is or what's going to happen next.

    I really hope you are having a better day and that we can all find some relief from this in the days ahead.

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    • Posted

      At least you have a doctor that did consider SOD as a possibility...that's a start ;-) I hope you will get some good out of this treatment your doctor is suggesting.

      In my case, I have the impression that everything I tried just covers up symptoms a little bit, but the cause is still there...whatever the cause is. To make the situation more complicated, my husband and I are planned for an IVF in the next few month. I am doing everything I can to be in the best possible shape for that, so I get really depressed when I get a flare-up all over again :-(

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    • Posted

      I am wondering the same thing!! What is "SOD"??? I have had pancreatitis since the age 13 and am now 29!! I have had several surgeries with no relief. They ended up doing a "whipple" on me which is where they removed half my pancreas, half my stomach & part of my intestines.. It was an absolute horrific surgery & recovery that kept me in the hospital for 4 months....

      The one question I have for all these people that are trying to "self-diagnose" themselves with pancreatitis is, what is your pancreatic enzyme blood levels????

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    • Posted

      SOD stands for Sphincter of Oddi Dysfunction. It's when the pancreatic sphincter that releases enzymes and bile into the duodenum goes into spasm causing a back-up of enzymes in the pancreas. This can then cause pain, pancreatic insufficiency and potentially pancreatic inflammation.
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    • Posted

      Hi Jennap, we are not trying to self-diagnose anything. We are just desperate to get any diagnosis from the doctors, so we can start getting treated. It is frustrating to be in constant pain, losing weight and generally feeling unwell, and not getting an explanation to why this is happening.. it is then that you start consulting google doctor, which is the worst you can do.

      I am sorry to hear you suffering so much with pancreatitis.

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