Hi everyone I am new to this group but praying that someone can help with advice as am at my wits end with everything. My problems started 2 years ago and started with severe constipation and the most horrific pai when I ate or drank wine... In the end I could no longer eat at all or drink wine... Iosg 17 kgs but after 8 months I managed to start eating again though only aittld I had a ct scan which showed pancreas looked normal but I had cyst on it... I had an eus done which said possible chronic pancreatitis and features showing it could be... I then had fecal elzstase test which was negative for cp but I am still struggling.... I asked for a blood test which showed serum amylase was 16 lipase was 24 both of which are low.... my doctor however says maybe they have always been low. I am so distressed as everyone says Iost all the weight because of depression which I know is nonsense as I have always enjoyed my food and that's where I am at the moment...I am miserable and down as I am so sure I have cp ... am struggling to eat certain things like meat and fat but everyone insists Its depression.... I am just not being listened to.... I look sick and feel sick but am at my wits end to get anyone to believd me ! Surely the serum blood results and the eus report stating features of possible cp should show a problem. Any help or advice would be so appreciated as am feeling so alone with this and am just so tired of it being blamed on depression ...I read that not many doctors are familiar with cp ... esp where I live which is in Zimbabwe...just lately I seem to be passing black stools. Not sure if this has anything to do with what's wrong... like I said any help will be so appreciated
Struggling : Hi everyone I am new to... - Chronic Pancreati...
Struggling
I am so sorry you are not getting the help you need. My only suggestion is to keep asking your Doctor to refer you to some-one who specializes in CP & insist you get some answers. Do you know if they removed the cyst ?
I'm so sorry you're having such a terrible time. My advice would be to keep going to doctors/hospital. Don't give up. I had a similar experience to you and I just kept going to see doctors and hospital when the pain was unbearable. Eventually they listened and a ct scan showed a pseudocyst. If it was a pseudocyst you had, it is possible that it shrunk...slowly. That's what happened to me but I had to become a real pest before any action was taken. Tell them you know your body very well and you are 100 percent certain that you have CP. Try to get printed information to show them and point out all the similarities between your body and the FACTS about CP. My heart goes out to you and I wish you the best if luck.x
Hi thankyou so much for replying with good advice as I feel so alone with this.. I will carry on trying and am seeing another doctor in a week ..sounds like your own experience was awful too...I don't think they realize how painful it is they will not believe me and you are so right about knowing your own body and knowing when something is wrong... I am finding it hard to believe that people could watch me go from 62 kgs to 45 kgs plus not be able to eat or drink a beer and put it down to depression....I lived on tea.. just seems crazy ... so thanks so much for your reply I hope this other doctor can be more helpful xx
I really do hope the new doctor will be much more understanding and helpful for you. Have you done any research about the best food to eat when you have pancreas problems? I have changed my diet. I no longer eat red meat, only chicken and white fish. Plenty of vegetables and fruit too. I don't drink alcohol at all because it's really quite bad for the pancreas, but I never really enjoyed alcohol much anyway. Occasionally I will drink a small glass of Malt Whisky, but that would only be to celebrate New Year or if a family member have a big event like when my beloved auntie turned 90 years old, but I must admit that I never tell the doctors about this as they blame the alcohol on my pancreas problems eventhough I'm sure I have inherited the problem from my birth father. A lot of his family have pancreas problems and it definitely can be hereditary!! I wish you all the best of luck with the new doctor.....don't give up!! x
Thankyou for such a lovely message I had to smile at the malt whiskey bit ! Ans so sorry to hear u got it through hereditary... how awful but u seem to be handling it well so well done ! Am still being told it's all depression which doesn't help but thankfully I still have my wits about me so I know I am right and will hopefully be proved right soon ... I have had to go by trial and error with most of what I eat but have resd up on cp too... I definitely can't eat fat or red meat or the pain is terrible.. like u said I can eat chicken and fish definitely no fat and ice cream and chocolate make me feel ill though can eat plain boiled sweets ...just discoverd can eat soft noodles and I can eat toast and vegetables and fruit and pilchards in tomato sauce ... I live in Zim so options are limited unfortunately but hopefully will get there in the end ... will see what the new doctor says about it all... thanks so much for well wishes.. can only see what happens xx
Hi thankyou for replying I am seeing a new doctor and hoping that she will be able to help as everyone else including doctors are still putting in Down to depression which is wrong... sure I am depressed about it all as nobody will believe me so hoping this new doctor will be able to give me her input. They did not remove the cyst they just said it was a benign cyst and left it
Black stool is a danger sign, tell your doctor right away.
Ok thanks very much
My sympathies. Truly this CP illness seems to be overlooked by the medical field -especially when symptoms come and go and tests don’t show up anything really alarming. My experience was similar to yours. Four years of chronic pain which got steadily worse. I had many tests done which didn’t show any significant signs for diagnosis. I was miserable with chronic pain and felt so alone. People (even close family members) can sometimes be insensitive and jump to conclusions thinking we are depressed and just wanting attention. Welcome to a group of people who understand and care.
I will pray for you. I believe God cares far more than any person can. He is my Rock and my Refuge when I feel alone in suffering. His grace, and love are truly my lifeline. Hang on there! There is hope and a future for you, SungirlO😊
Thankyou so much for such a lovely message and hope..... sounds exactly like what I'm going through ! Not one person understands they are still chasing the depression problem but wondering why the meds aren't fixing me or making me eat better ... I'm so sorry u had to go through this too...I keep praying that someone will believe me but so far they Stoll believe I stopped eating and having my beer at night cos of depression.... makes you feel quite crazy sometimes ... I am so glad u have found refuge in the Lord.. as have I... I am seeing a new doctor today and hoping she can help as like u say the tests are not always conclusive... hoping this doctor will actually listen to me... hang in there too longingtrustingHIM xx
Brother in hospital with acute alcoholic pancreatitis- seeking advice for what will happen next and interested to hear others' experience
