Hi everyone, and thank you for participating in our last discussion topic, "'If you had to visualize your pancreatitis in a picture, what would it look like?" We had some interesting replies, like 'corn on the cob' and a 'big fireball'. 🌽🔥 If you haven't added your visualization yet, please feel free to head on over to that post to share.
This week's question is: What obstacles did you run into looking for diagnosis support for your pancreatitis, if any? 💙
Hi there, it's me with the big fireball pancreas. I hope no one is having a really bad time with their pancreas at the moment.
When I was diagnosed with chronic pancreatitis I wanted to know what may have caused it ie. could it be from having to take daily steroids for 25 years or maybe poor diet, because I have struggled to eat until between 3 and 5pm since having my pituitary gland removed. I eat very little also. I was also trying to ask how I could help myself with changing my diet or are there other things I could do?
However, I was repeatedly talked over by the consultant and he kept saying , "you need to stop all your drinking"
He had never seen me before, he didn't ask any questions about my lifestyle. He just assumed that I drink alcohol but I don't. He didn't try to explain what chronic pancreatitis is or how changing my diet can help.
I was disgusted after the third time he spoke over me to say , "you need to stop all your drinking" so, I said , "I've heard enough" and I left.
When I got home I phoned the hospital and spoke to the secretary for the head if that department ((General Surgery by the way!). She made an appointment for me to see the head doctor in the department two weeks later. I thought I might get some answers then but to be honest he didn't really believe at first that I don't drink and just told me to read the NHS website to learn about this new extremely frightening condition that I have. That had very little information so I really have learned more from a Facebook support group and some people on this website, for which I am eternally grateful and my pancreas is doing a little better now and I am having fewer flare ups. I have a much better diet now and that along with creon and good painkillers have made life a bit easier for me...for the present time anyway!
Unfortunately, I'm sure that resonates with many patients on here. I wish medical professionals would listen to their patients and ask about their lifestyle before making assumptions; I also wish the stereotype that pancreatitis patients are all heavy drinkers wasn't a thing! I'm so happy to hear that you were able to move on from that doctor and find resources that were able to help you and keep the flare-ups down. Keep up the good work in taking care of yourself, and know that your experience and voice matter! 💙
My age...I was only 19 with no gallstones, never drank alcohol.
My problem wasn't so much a diagnosis issue, but a treatment issue. My surgeon had prescribed me pain medicine to cope with the pain from pancreatitis. I had a flare with a lot of nausea and pain. When I told my primary care doctor that I had used prescription pain meds. to treat the pain so that I didn't end up in the ER, she flipped out and told me to never use prescription pain meds. again. She would not listen that without the use of the prescription pain meds. I would have started vomiting because of the severity of the pain. I checked with my surgeon and he reassured me that I had used the prescription pain meds. appropriately and not to worry about my doctor's reaction. I did not appreciate my doctor accusing me of being an addict, when I was under another doctor's care.
That is so frustrating! I'm sorry you had that experience with your doctor, and I hope you've been able to find better care since then. 💙
Fortunately, that was ten years ago. Sometimes, I wonder if my condition had just gotten too complicated for my original doctor. Unfortunately, most doctors won't admit they are stumped and help you find a doctor that can help you. About 6 months after that incident, I found a new primary care physician that has been wonderful ever since!
Anne
Oh also that I didn't look 'unwell enough'. I didn't have a temperature and I wasn't being sick. I just had the intense pain and could hardly walk and couldn't lie down in pain.
The main issue is GP not listening and immediately dismissing an existing diagnosis of an autoimmune disease that could be the cause.
I’m not diagnosed yet and still have tests to come but when GP talked to me about pancreatic cancer and asked about alcohol, as soon as I said I have been a heavy drinker he became dismissive and disinterested telling me I was over anxious about my health. Well who wouldn’t be when GP says he has to test for liver, pancreatic and ovarian cancer! He prescribed 40mgms of omeprazole which surprised me as if he thinks it’s anxiety meds are pointless. Apparently symptoms can be similar and overlapping when it comes to these organs.
There’s no ignoring the raised amylase blood tests or the loss of a stone in weight in a month without vomiting or diarrhoea or maybe he thinks I’m eating daffodil bulbs to make myself ill. I’m so angry GP won’t look at my history before shouting cancer and sending me for tests.
What was your experience with your pancreatitis diagnosis? 📣 Discussion Topic: What other conditions do you have as a result of chronic pancreatitis?
📣 Discussion Topic: How do you care for your mental health with pancreatitis?📣 Discussion Topic: What's a small victory in your life that you are celebrating?
What has been your experience as you sought care/support to manage pancreatitis?
