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E.P.I. Need some info just diagnosed.

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brittany13042
brittany13042

hello everyone.

im 27 years old, female.

I was just recently diagnosed with E.P.I. and im confused ive been dealing with the symptoms of E.P.I for years, ive tried a bunch off different medications over the years, was diagnosed with GERD. last year i had a colenoscopy. everything came back normal, no crohn’s disease, no celiac‘s disease, no gluten intolerance, no auto immune disease and not genetics. I was on diagnosed with IBS tried a couple different medications. GI doctor couldnt come up with anything but irritable bowel syndrome. over the year my condition got worse. in the last 4 months ive lost about forty pounds the first two months of those four i was 135 down to 106 the last two months its somehwere between 92 and 95 pounds. Ive been experiencing sever abdominal pain upper left side under ribs and back and middle left side. a small part of my stomach upper left side swells out like a lump that u can see with the eye. tender to the touch hurts. sometimes my pain is so bad i literally cant stand straight or walk let only move. ive been going threw constant cold sweats and sometimes a rash on my face and body. everythinf i eat went right threw me. ive had werid coloration in stool and other werid things with my stool. eating while having the pain in my stomach while intensive the pain. ive had it last six hours before (over heated, sweating and crying because it hurt so bad i got severly nauseaed and would throw up. im constantly having cold sweats. every day feels like im fighting a really really bad flue, im week and extremely tired all the time and i have ADHA. but whatever this is has made my life miserable and hard to take each day on. I get to the point of confusion, "brain fog" i literally have no appetite whats so ever, I never get that "im hungry feeling" i used to have 2020 vision and now has of this year im boarder line legeally blind and needinf to wear glasses daily, and im going back in to have my eyes re done because they have gotten worse, im losing my hair and my finger nails are brittle along with muscle Spasms ( Charlie horses) ive had PET SCANS CT SCANS MRIS AND FECAL TESTING. my last pet scan was 3 days ago and it came back normal. no blood work has been done in a while sense the weight loss and not sure why they have not done one. but my doctor told me I have E.P.I and to start taking Zenpep 25,000 5 times a day capsules. he never told me how i got this or when or how it started and that why im confused because i had all the tested for all kinds of diseases and it came back negative for all of the above. so how can i be diagnosed with E.P.I. when the things that cause E.P.I came back negative. I'm guess its not cancer because it didnt show up on the recent PET scan i just had and altrasound and normal ct scan. someone please help me figure this out i need help I'm miserable feeling Horrible daily. everyone is commenting on how bad I look. I know i look bad. I just don't understand how.

Is this a life threating disease?

Is this cancer?

I see that its considered "rare" is that true?

E.P.I is diagnosed when the pancreas is severly damaged by 90% so ive been told but wouldnt that show on a scan?

why did my doctor tell me what caused it? specially sense everything was normal.

someone help. im confused and im just wanting to feel better.

0 likes, 6 replies

6 Replies

  • dermot_26868
    dermot_26868 brittany13042

    Posted

    Hi Brittany,

    Well first off you seem to have a lot going on there so let me tell you this... there is light at the end of the tunnel and I am living proof off it. I'm no doctor and so I cannot offer medical advice but I can tell you my story and you can take similarities from it which may help your own tough case. I was diagnosed with Chronic Pancreatitis 4 years ago through my addictions - mainly the alcohol and tablet taking that caused it all. You spoke of pain(s) and not being able to stand up .. I can totally relate and I have been hospitalized 4 times since that... the last time for 16 days and was told I was lucky to be alive... my only comfort was sitting forward with the pain which sometimes helps but no medication works for it bar some seriously strong opioids. My cause unfortunately was my consistent drinking etc for 20 years... I'm an alcoholic, a drug addict and compulsive gambler... an all round rocket who is a mathematician to boot. I always found life a little hard and I drank to forget about things... but my point is that these things are about 'a cause' and 'a symptom' - my cause was booze and the symptoms were massive weight loss, strange oily stools, jaundice and tingling skin etc with major left sided pains and zero hunger... so after almost killing myself I finally spent time in the hospital with all the scans you have described and they came back with Acute Pancreatitis initially until I got better (U see pain has no memory) and ended up in there again due to alcohol. The only thing that worked for me was to rest up and take plenty of fluids and, while supervised, try to allow the organ (which becomes extremely inflamed) to settle down which takes about 5/7 days... only then would my pain begin to subside.

    so I guess what I'm saying here is to get yourself into the hospital and dont leave until you have a diagnosis or at least a plan in place with your GP to help alleviate the pain and the anxious thoughts and worries going on... work out a plan or eating schedule with him or someone else too and source medications that will help including CBD oils etc which I find are helping me. I'm 14 months off the booze and tablets etc and needed to go into a treatment centre to buy myself some more time on this wondrous planet and I can tell you 14 months ago it was all so different... but the clouds lift and Brittany your mission is to truly get to the bottom of all this... if your having pains that wont allow u to walk then dont be leaving the hospital until you have everything checked top to bottom..... the symptoms you describe could be pancreatitis for sure... but it could he other things and a medical doctor is the only way. Granted it's a real pain in the backside but it's a journey you must take... I remember lying in the hospital bed with tubes in almost every hole in my body helping me to feed and go to the toilet... it's no fun and can be frightening but it must he explored fully to take a lot of the worry out of it..... can you take someone with you? A parent or a friend etc? As I said the time for worry if over and the time for action is now... get to the bottom of it by going to additional doctors or hospitals until you get diagnosed properly... then start slowly day by day dealing with it and know that the body can reboot once it gets a chance.... I wish you well and let me know more about your situation etc. I hope I can help a little more... I struggle with plenty of things and dont normally reach out but this time I feel obliged to do so in my 40 years on this planet. best of luck and I'll say a prayer for you. Dermot

  • heather38380
    heather38380 brittany13042

    Posted

    from what ive read about EPI its becoming more common and more people might have it than drs know the unfortunate thing is that the pancreas is one of the hardest organs to diagnose because its so hard to see. my suggestion to you is to call your dr and asked how he came up with the diagnosis and what caused your condition so you can sleep better chances are you had chronic pancreatitis without knowing which can happen to alot of people. from all the tests youve had i feel like cancer would have shown up so i wouldnt stress about that but you do need to know what caused your condition just so you can sleep at night without stressing. you have a right to know so call your dr and get answers about your condition.

  • Shortie79
    Shortie79 brittany13042

    Posted

    It takes years to get a diagnosis when it comes to the pancreas … I hope you're looking for a pancreas specialist instead of seeing a regular GI specialist. EPI will affect everyone differently. I didn't get it until after I had my pancreas removed and I'm still dealing with pain (more intestinal than pancreatitis type pain). A lot of the pain you describe is what I dealt with but I had chronic pancreatitis due to pancreas divisium (born with two pancreatic ducts that never fused together). I had everything come back clear in the tests except a CT Enterography (showed atrophy of my pancreas) and the MRCP showed my two ducts. After those tests I demanded to see a pancreas specialist. When the pancreas isn't working at full capacity it'll stop producing digestive enzymes and insulin. In my case I had to have my pancreas removed but I'm dependent upon my enzymes. Without my Creon (same as ZenPep just different brand) I won't absorb anything I eat. The enzymes only work for 30 minutes and should be taken before or during your meal. You also need to take one with your snacks too. They will cause gas, bloating, weird stools, etc. If you go to creon.com they explain epi too. I would limit your fat intake and carbs too but it's not a death sentence. I'm still recovering from having my pancreas removed but I'm still young, I'm only 40 now, I was 37 when I was diagnosed with pancreatitis.

  • michael78220
    michael78220 brittany13042

    Posted

    Hi Britanny,

    I hope all is well.

    I just got diagnosed with Epi after an elisa test and like you at the time exams so far didnt find anything (scan, blood test..etc). Starting this painfull and uncertainty journey, I was wondering how did you manage the symptoms and if you made some change in your lifestyle since 2019? Did the doctors find the reason of your EPI and do you feel better?

    Best,

    Michael

    • brittany13042
      brittany13042 michael78220

      Posted

      hello, I forgot that i posted this.

      so here is an update!

      come to find out i dont have E.P.I?

      the zenpep made my symptoms worse actually. finally i found a new doctor. We did another stool test and again there was a lot of "fat" in the stool. but none of it was caused by my pancreas. for a while there, my doctors had no clue why i was losing weight, or why ive been in so much pain. eventually we discovered that I have malabsorption syndrome and Gastroparesis, which is why its hard to gain weight. im not absorbing what i intake. my doctor discovered that i have been suffering from "rare compression syndromes" basically my whole life. since birth. I have Superior Mesenteric Artery Syndrome, Median arcuate liagment syndrome, nutcracker syndrome, midline congestion syndrome, pelvic congestion syndrome, Ehlers Danlos syndrome, dysautonomia autonomic nervous system dysfunction and unfortunately more. So with SMAS i have a compression to the third portion of the duodenum, with NCS, i have a compression to the left renal vein and so forth. I developed malabsorption syndrome and Gastro paresis due to the obstruction or compression to the small intestines which would cause extreme pain everytime i ate or drank anything. As years continue to go on, it got worse. I didnt have to eat in order to have these horrible pains.

      currently, im lucky if i can eat once a day. IF i do, its a night time when i know im not going anywhere for the night. i started palliative/ hospice care about six months ago. I'm currently waiting fir multiple surgeries. my first one, ill be donating my left kidney ( due to nutcracker NCS) and after that ill have the surgery for MALS, and SMAS, remove my gallbladder and have a full hysterectomy.

      symptom wise, i still deal with all the same symptoms I had when I made this post and yes a huge change in my eating habits. i dont know what it is like to eat real food. ive been eating the same thing for a very long time. it works and thats why i eat the same thing. ive tried a lot of other foods and i cant handle them or digest them. the pain is just not worth it.

      i hope this was use full. I wish i had better news to share with everyone. I hope that one day I will. Oh also. the Doctor did diagnose E.P.I. but it didnt stick. he had hoped the zenpep would help me absorb and be able to gain weight. unfortunately it didnt work.

      life is rough. im basically bed bound majority of my time. my memory is slipping fast. and the longer i go like this, the more health issues arise. im tired all the time no matter how much sleep i get. i’m severely malnourished and that makes keeping up with life hard.

      majority of the time im really sick and trying not to vomit so i dont lose anymore weight. nausea medication doesn’t work.

      but i made it this far.

      whatever im doing must be working, but for how long? im not sure.

      i hope things start turning around for you and you are able to find a regiment that works for you.

      please keep me updated.

      ( thank you to everyone else who commented. i great appreciate it)

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