A very warm Welcome to all of my Readers. Thank you for coming to my website. If you need help dealing with pancreatitis type issues, then you came to the right place. I completely understand how you feel. Living with pancreatic disease has been the hardest thing that I ever had to do. I have been surviving for ten years since the first major symptoms started to appear. It all started in 2010. I truly hope that through all of my experiences and daily struggles with this disease I can be of assistance to everyone looking for help, and/or information on how to live with a mean pancreas, and still be happy, and love the life that we are given. It took me 10 years, but I finally feel like I am getting things under control, or at least a more stable life. My reoccurring, repetitive, and extremely painful pancreatic flare ups do not control my life. I am finally beginning to participate in my own existence again. I pray and hope for the cure every day. I hope that you will join me, and many others like me in this journey, and one day we can destroy this disease. Giving up is not an option. However, I need you to understand that I am not a doctor, and I am not a medical professional. I am not giving anyone a medical advice here. Always seek medical opinion from a qualified expert. More importantly, do not wait. If you think that you require medical attention, see a doctor immediately. Thank you.
Hi, I just found your blog and I like this post in particular. You put forward some great arguments. Where can I find out more?
Have you thought about having the tp/ait surgery? I’ve had chronic pancreatitis for 8 years as well. A GI doctor perforated my pancreas during an ERCP and it caused acute necrotizing pancreatitis, psuedocysts as well as sepsis. Now today I suffer with pain 24/7, my teeth are horrible from all the vomiting of vile. I cannot eat a single thing without it making me sick or getting diarrhea, despite the enzyme replacement therapy. I just met with my GI doctor at the University of San Francisco and he has finally referred me to the surgeon that performs the total pancreatectomy with auto islet cell transplant. Now I am just waiting to hear from his office to schedule a consultation. I am done living with chronic pancreatitis and this horrible pain. Just wondered if you had considered the surgery.
Hi Tina,
Thank you so much for sharing your story with me. I truly appreciate your insight. To answer your question, YES I have been thinking about the surgery every day since I found out about my Pancreatitis. I honestly feel your pain and I completely understand your decision. Your story sounds exactly like mine. I hate this disease. The pain is insane. You really can’t describe how much we go through every day. It’s just so brutal to live like this, but remember we can never give up. You are not alone in this. I was also throwing up bile for nearly 7 years, every single day for 4 to 5 hours a day. I couldn’t eat or absorb anything properly. There were so many times where I was certain that I was going to die. I even begged God to take me. I will be posting much more information about everything that I have done up to now to get my Pancreatitis under control, but I maybe I can give you some ideas now. If you are throwing up bile like me then you may be also suffering from bile acid reflux like me. Even enzymes weren’t working for me until my doctor prescribed me CHOLESTYRAMINE for oral suspension to treat the bile acid reflux and bile acid malabsorption. I also had horrible IBS problems and diarrhea because of the bile. I was also severely malnourished and nothing was getting absorbed. Look it up and talk to your doctor. It changed my life. It stopped the vomiting and the diarrhea completely. I’m am finally stable and eating a little. But without it I would die. I’m also on Probiotics, and every day for last three years I have been drinking herbal teas made out of Nettle, Black seed, Mint, Ginger, Green Tea, and Chamomile before bedtime. I never had any problems with them. I also always used fasting to calm my pancreas down if I felt a flare up was coming up. I use the slow release, coated enzymes. I love these ones especially that I don’t have to take those with PPI’S because PPI’S made me vomit more bile. I take about 60 capsules a day, of the 10,800 Units. I had to give up meat completely, but lately I have been tolerating a chicken breast, steamed. I also use Boost beverages, but they only have 0.5 grams of fat. I cannot tolerate fat at all, and of course zero alcohol. You are extremely brave for going for this surgery. I’m still too scared to do it, but I have read about it and I know that this could change your life. I am praying for your success. I know I will have to do the same sooner or later. Right now I am about to go for my second ERCP because my first one wasn’t a success because my pancreas was too inflamed for the doctor to get into it. They only did a pre cut hoping to get a better drainage, but they couldn’t cannulate the CBD because of the inflammation in my pancreas. They also dropped the needle and they didn’t want to continue because of the risk of making things worse. So it’s been a year and a half since my last ERCP and they will be making another attempt. I developed acute pancreatitis attack after my first ERCP, so that scares me even more. That is so horrible that your doctor messed up your ERCP. That is exactly what I am afraid of. We take a huge risk every time we agree to do ERCP, so I understand where you are coming from. You are my hero. Don’t ever give up. I go crazy every day with my pain too. I have been sleeping on a recliner since 2013 because any pressure to my back causes more inflammation. Since 2013 the pain has been there 24/7. Honestly, words cannot describe what we are going through. That’s why I created this website, hoping we all can help each other. I will be posting new things as often as my Pancreatitis lets me. I truly hope we can stay in touch. Please let me how everything goes. You are in my thoughts and prayers. Be strong. You are a hero and you can do anything. Thank you so much for talking to me. Ewa