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20 & Confused With Pancreatitis

Posted , 8 users are following.

jessb301
jessb301

So I'm Jess, 

I'm 20 newly diagnosed with pancreatitis, with very little to no information from doctors & hospitals. (Please be aware this is a bit of a long story! but in need of help) This year so far I have had 3 pretty bad 'attacks' all of which I have been admitted to hospital for, a few not so bad but still very frustrating & painful. The very first time I had an attack was new years day, after a night that consisted of only 3 drinks! I was seriously ill, vomiting around every 20 mins, extremely high temps, serious back pain to the point of physically not being able to stand, mild muscular convulsions, dehydration the works! I would have to say it was the sickest I have ever been. After about 8 hours of torture I rang my mum to take me to the hospital, after being admitted they assumed I had appendicitis straight away. Did blood work, which at the time the were sure was fine, ct scan, chest xray, ultrasound & then even an internal ultra sound. Coming to the conclusion I infact did not have appendicitis but a kidney stone. I was told I had to stay till it had passed for fear of blood poisioning if not. They were very slacked when it came to straining my urine for the stone, most of the time the collection pan fell into the toilet loosing most of the fluid inside! Needless to say they decided to discharge me anyway, and as I was about to be discharged later the next day they looked over my blood work & saw my lipase levels were about 1500. Because they never really explained this to me I had no idea weither it was good or bad but assumed it wasnt normal. They decided to keep me longer and do more blood work. After nearly another full day on fluids, antibiotics & no food my bloods came back with a lipase level of 550. But they still decided to discharge me with little information except see your doctor to get more tests, you have pancreatitis. Not knowing much about it & feeling a little better I let it go. Never was there a warning about triggers or to stay away from anything. No information at all.

Then a few months later was out for a friends birthday and had probably 2 drinks in the space of 3 hours went to have another & ended up unconsius & unresponsive on the floor of a bathroom for 2 hours with apparent convulsions. Paramedics tried to wake me but it wasnt happening (they actually fractured my thumb from pressing & bending  on it to try & wake me & I still dont remeber) it wasnt until I was at the hospital that finally I started to answer some questions. They asked me if i was on meds or had any previous history of illness, all i saw was pancreatitis. By the time I was awake & able to sit up they had diagnosed me again with pancreatitis due to intox. Told me how I needed to lay of the alcohol & to make better choices & how I should have learned the first time. Which made me feel like I had done something wrong I have never had a problem with alcohol nor have I ever abused it, I hardly drink. But I know it takes me more that 3 drinks to end up like that, I left feeling worse than I had the last time physically & emotionally. As I had not been told alcohol was a trigger, nor am I an irresponsible juvenille which is how they made me feel! 

Again later that afternoon I ended up in hospital again as my symptoms were worse, all of the original symptoms but with the added bonus of extreme chest pain & elevated heart rate. To which they again discharged me after fluids, more chest xrays & cts and again with pancreatitis, doctors referal & no real information besides lay of the alcohol & fatty foods. 

Since then I have cut back on my fatty food intake & completely wiped my alcohol but still feel really crappy. It has affected me emotionally as well as physically because it has made me feel guilty for some reason. Like I should have known, thats definately the vibe I got from the last to doctors at the hopsital. I just feel like ive been given this label & been left to sort it out myself with no real regard for me, because they think Im just some silly young girl who binges on the alcohol. If I had known the cause I definately wouldnt have gone back for more. And even though I have cut out both of those things I still do not always feel 100% And I dont want to go back for help because I feel embarrased. 

I know my story is long & my spelling & punctuation not the best! But I just would really love some advice or even some people in similar situations! 

0 likes, 7 replies

7 Replies

  • jessb301
    jessb301

    Posted

    May I just add, I still get very sudden attacks of sickness. Ive woken up in the middle of the night a few times in the last few weeks with pain & nausea. Sometimes to the point were I will be sick 2 times or so then will ease off a little enough for me to get to sleep. Also a quite a bit of back pain & all around spacey feeling. 
  • robin0
    robin0 jessb301

    Posted

    Hi. This disease is a bugger. A little know and understood illness. That the doctors have to put into a box for there government stats.

    As a golden rule I work on 5% to 12% fat per 100g.

    Although everyone is the same but different as someone can stand coffee aka me and others can't. A lot is trail and error.

    The pain is like no other. You can't describe and others just look at you like they don't believe you Or even begin to understand.

    That's why myself and another have started pancreatitis pals bringing knowledge and experiences from the UK and America. Its a Facebook site. Where I can message each other and ask questions and most of all have a pain buddy. Someone to talk to through the lows.

    Its a new site only been going a month. Please feel free to join us as another source of help and support.

  • tasha0912404
    tasha0912404 jessb301

    Posted

    Hey jess yr situation is juss the same as mine bt mine is a little complicated coz i hve gallstones dnt leave that for long coz yu feel embarrassed yu will regret later go ther and explain how yu really feel coz its a life threatening if it's nt treated carefully iam now in and out of hospital coz of that act while its early love
  • wildjflippin
    wildjflippin jessb301

    Posted

    I am so sorry you are going thru this. My husband who was 55 recently passed away from this awful disease.  He was in the hospital for 3 months. The hospital personnel was very judgmental and said his pancreatitis was caused by his "alcoholism"...sorry but 2 beers a night hardly consitutes alcoholism.  Finally one of the few knowledgable doctors said, while heavy drinking and fatty foods may contribute to this disease, it is not an absolute.  Some people may have a weakness in their pancreas and anything can set it off.  Of course they advise no more alcohol and junk food.  You are young and your attacks, while very serious, it appears you seem to be on the right road. DO NOT feel guilty, they dont know for sure what really causes this.  And to not give you any discharge instructions is not right.   My husband's case was very severe, part of his pancreas had "died" and they had to do surgery on it (the pancreas cannot stand to be "fooled with") and he developed septis (blood poisoning)  I will send you positive thoughts and you hang in there, the majority of people recover fine and live normal lives. (I only wish my husband had been one of those) 
  • william65322
    william65322 jessb301

    Posted

    I know exactly how you feel.  In the course of about 16 months I was in the ER around 22 times.  Doctors looked at me like I was just "fishing" for pain meds and/or attention.  When the ER doctor would speak to my primarcy care physician he would set them straight and tell them how bad my CP is.  Do not feel embarrased about your condition.  You may want to consult with a pain specialist as mine here in Colorado as been awesome and he understands what is going on.  Remember you know your body better than anyone else and do not let the doctors just pass you condition off.  My prayers will be with you. 
  • cathy31644
    cathy31644 jessb301

    Posted

    HI,

    do get as much info from folk like us who have it,know the frustrations with it, and will support you. I stick to very low fat food 5%in any 100gram ingrediants. no Alcohol at all. no chocolate and drink lots and lots water.also take creon to help pancreas digest food.good idea to ask if you can be referred to a dietitian,that really helped me. do join pancreasis pals on FB its a good help.keep strong and find out as much as you can as you are the only one who can really make a difference.

  • Miranda1616
    Miranda1616 jessb301

    Posted

    Jess,  Have the doctors checked you for Pancreatic divisum?  Seems you do not drink in excess.  Pancreatic divisum is a condition in which you have 2 pancreatic ducts that do not form into one as they should - which can cause problems.  Look it up and talk to your doctor about it.  It is a congenital anomaly that can be hereditary.  My mother and daughter were diagnosed with it.  My daughter is currently in the hospital.   Her doctor chose to treat it by placing a stent and leaving it for 5 weeks and then taking it out and placing a bigger one leaving it for 5 weeks and then she will have it removed hoping the opening to the pancreatic duct is larger and will prevent her pancreatitis.  The risk of this is pancreatitis because you are messing around the pancreas.  She did great on the first one but developed pancreatitis on the second.  They diagnose divisum by MRI - check into it - it is worth a try.  Good luck!
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