pseudocyst on my pancreas,,anyone else?? :(

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Hi,,Im going to try and keep this short,lol. I was rushed to hospital last febuary and long story short i had gallstones that caused acute pancreatitis. I was also a fairly heavy drinker at the time and im sure this was a big contributor too. I had my gallbladder removed in july and kinda thought that would be it. I was so wrong! I was pretty much in pain constantly until in october it got so bad i went back to the hospital and my amylase was at 609. I had CT scan MRI and an ERCP (which was awful!) and they said i had a pseudocyst on my pancreas. I was sent home after a week with tramadol,codeine and paracetamol. The pain didnt go away,hand the pain killers had absoloutley no effect. I was rushed back in last week after the pain became unbearable,,and my amylase was at 426. The doctor said that the cyst was keeping me in a constant low level pancreatitis state and i was sent home on oramorph and paracetamol. The cyst is 10.5cmx8.2cmx4.5cm big....which seems huge to me!! ive been referred to a pancreas disease specialist at kings college in london,,,has anybody had any dealings with them? They said they couldnt drain the cyst outside my body because of where it is,but that the specialists may have some other things they want to try. 

Im quite scared,as im relativly new to all this. Anybody been through this,or have some experiance of things like this? Id ont know anybody whos got CP nd havent spoken to anyone other than my doctor about,,and we all know how helpful they can be!! lol

Thank you in advance!! xxx

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  • Posted

    Morning,

    ​I had similar.

    ​My stone was in the bile duct but the cyst ( one of them ), is 9cm long and also in a place meaning they cannot drian.  I was rushed in 1st Nov for two weeks one of which was in intensive care. Normally it should be at 100, mone with at 700. I was then back in twice for two weeks at a time. I am still off as the cyst is causing pain and I cannot sit up for long, I cannot eat much and have lost over two stone ( Now under 12 stone).

    ​I am having another scan next week to see how the cyst is doing. They should start to go in 6-8 weeks but mine is longer than that. If it is not going down I will be sent to Addenbrooks for an opp.  The opp is a large one and has risks, recovery is long so they do not want to do this unless they really need to and I dont want it. I am not looking forward to the Glasgow test again other than that I do not worry to much. After all the hospital stays and needles, tests and pain, I am cured of hospitals completely.  Dont worry like Addenbrooks Kings is one of the best, you could not be in better hands. 

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  • Posted

    hiya!

    Thanks for your reply smile sounds like your having it rough to! ive lost almost 9 stone but was 27 stone at the start of this horrible situation so obviously not a problem. Ive always wondered just how a "normal" sized person would cope with this condition as eating is such a massive problem,,the weight just falls off. I was so frightened of hospitals at the start but im not bothered now at all,,i just want some sort of resemblance to a "normal" life. I have 3 children who have in effect Lost there mum for the best part of a year as im usually so poorly. I feel like someone has just hit the pause button on my life. Ive heard very good things about kings so im hopeful they can help me. How long have you had this for? 

    My cyst grew about 2cm since december 17th when i had an MRI so they dont hold out much hope of it dissipating on its own. 

    This may sound stupid,,and it sounds like something i should know,,but what is the glasgow test? lol. Ive not even heard it mentioned in front of me..but i was in medway maritime hospital in gillingham and it has proudly held its status of the worst hospital in the country for the last 3 years! 

    Good luck to you gary..id love to know how you get on in the future? xx

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    • Posted

      Morning again,

      ​The Glasgow test is when they take blood from the underside of the wrist. You know the one.. where they try 20 times from each wrist and then finally find the spot... great fun!

      ​I have have sort of had this for seven years or so. I had my galbladder out in 2007 but they did not check my bile duct so within a month I had the stone pain again and it went on for seven years!! We went for a weekend break at the end of Oct and it lasted one night then was rushed into Ipswich hospital from the side of the A12. It was touch and go and I almost went. Was in intensive care for a week and then into a room. They found a 10mm stone with another pushed into it in my bile duct which has caused my severe case. Two weeks later out and recovering at home. A week later rushed into Bedford hospital with the same ( 700 instead of 100), in for two weeks home again and then rushed in on Christmas day again with 700, for another week now home recovering again. One cyst is causing the problem with eating and pain. Its not in a good place like yours. I am having another scan next week to see how its going !!!  Hope I dont need to op at Addenbrooks. Lots of fun and like you am completely fine with hopitals now....  Keep happy and dont let them get you down.  Kind regards  Gary

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  • Posted

    oh! when thay take the blood gases from your artery,,a radial stab i think its called. The name alone had me quaking,,no medical procedure should have the word "stab" in it! 

    Unfortunatley im extremeley difficult to bleed so some times even for routine blood tests,i have to have this procedure done instead. Or i have a central line put in my neck in theatre,,makes it easier for them to get the blood they need,,not so nice for me though lol. Wow,,cant believe you were suffering for so long! I only found out i had gallstones once i'd been rushed in with pancreatitis. What a miserable place to spend christmas sad cant be nice for your family either. All the best Gary xx

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  • Posted

    Hi Folks

    Obviously many people suffering with panacreatitis. Would like to hear more detail as to where your pain is. I have mid-low left side back pain now going on 9 months and have yet to get a firm diagnosis. Am awaiting the outcome of another amylase blod test as previous was elevated but doc was trying to rule out if this was due to food excesses over Christmas. I am taking both Dulloxetine (Cybalata), which is not a nice drug with many side effects, and cocodamol which gives me some degree of pain relief. My appetite is OK but my urine is highly coloured although not sure if this is side effect of Dulloxetine. Good luck to all. It is sad we have to depend on Web forums to work out a self-diagnosis but when suffering from pain we naturally revert to anything.

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  • Posted

    I agree it is a shame,,but to be honest with you some people are so well informed on there condition,they are sometimes more equipped to offer advise than than the doctors! Recently most of my pain has been in my left side under my ribs,my left shoulder (this is a horrible pain that nearly knocks me down and can come out of no where!) and pain in the middle of my back. I have pain constantly,,there doesnt seem to be a break in it at all. Its sometimes just low level,dull,uncomfortable pain. But it can flare and become a strong stabbing pain all over my stomach. It hurts to breath,move,bend,,even sitting still or lying down doesnt offer any relief sad im taking oramorph and paracetamol at the moment,,which is really helping..but then its morphine so i should bloody well think so! I was taking tramadol and codeine before and getting little or no relief at all. I watch what i eat so carefully,,and can happily go days without food if it seems to be controlling an attack. I only have an appetite when im in no pain at all,,then my appetite floods back full force and makes me want to devour everything in sight!! I havent drunk alcohol since my first attack almost a year ago. Although I had gallstones,,the fact that i was rushed in to hospital the night after a huge drinking session with friends doesnt strike me as a coincidence. I hope you get some answers soon!! must be horrible not having a confirmed diagnosis sad xxx
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  • Posted

    Yes thats the pain I have experienced many times now. You can hardly bare it and not even the very strongest pain killer ( only in hospital), does not really help. You cannot stand it and can hardly take a breath, your fingers tingle and you have to walk while you cannot talk. Its the worse pain which I have had on an off for the last seven years. Anything else and I would question your illness.
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  • Posted

    Gary

    My pain does not be too bad on occasions but yes have pins and needles in my finger tips and more often than not down my lower legs. I am assuming if I have pancreatitis, it is more likley to be the Chronic form otherwise I would now be hospitalised. When my condition first started I did have a severe pain in my left side which I feel was the acute type and probably caused by a small gallstone passing through my pancreatic duct; it passed in 2 minutes. It may however have caused scaring which has now developed into CP.

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    • Posted

      That would sound right.  I would not know about Chronic Pancreatitus but the pain sounds the same when it happens.  The scaring would cause the chronic pancreatitus ( I was lucky as the stone in my bile duct was too big to pass which caused my problem), I am told I have no scaring but as I sit here at the moment I can feel another attack coming on which will make another visit to Bedford hospital and another week at least stay!  Happy days!
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  • Posted

    sad

    Good luck Gary,,really hope you dont end up back in hospital. Even though i hate hospitals,at least i know when i go in,,ill definatley have some relief because of the intravenous morphine/pethidine/paracetamol.

    paracetamol is so rubbish in tablet form but so effective as a intrvenous drug. 

    Im a little confused with the acute/chronic thing though. when i was first diagnosed it was with acute pancreatitis,,but because it keeps coming back they are now saying it is chronic pancreatitis. but i understood that the reason it keeps flaring up so badly is because of the pseudocyst? so when i have the cyst drained,,shouldnt the frequency of the attacks decrease? therefore being acute pancreatitis? i dont know,,will have to talk to the doc again! 

    take care both xx

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    • Posted

      It's been interesting reading this thread. I'm not the sufferer but my husband is and has cp. He too had a pseudo cyst which was drained. He hasn't so far (touch wood!!) been hospitalised. He has pain sometimes so intense he too can't move. He always feels nauseous and has severe vomiting episodes from time to time. This makes him extremely tired. He takes paracetamol but not all the time. His isn't alcohol related but from trauma. He was crushed years ago which caused a back injury. When he has had bouts if back pain or vomiting this has been put down to his accident or stomach bug. In fact it was probably acute Pancratitus which if we'd known and lifestyle and diet changes with nil alcohol may well have stopped it progressing to cp. It's extremely worrying for the patient and the family. I have read up on how some are effected by cp and its scary. I don't share it with my husband as i don't want him to feel despondent. He may not get those problems so i think why worry him. Good luck gents i hope all goes well for you. X
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