I have chronic pancreatitis and the doctor is suggesting surgery

I wonder if a referral to one of the large teaching hospitals would be in order. I see you have Kaiser so I dont know if this is possible in terms of insurance coverage. Also, nationalpancreasfoundation.org
Has a patient resource section.

Tagging a few members who are familiar with chronic pancreatitis and might have input on your doctor's recommendation of surgery: @1realjeannie @ericawiersfischer @cc8 @marvinjsturing @lake3031 @ericawiersfischer @harper7745 @tls. Hoping they can provide some helpful input, @swindom50.

Thank you Lisa. Yes. I have chronic pancreatitis, EPI, malnutrition and now Gastroparesis. It is a very frustrating illness and I am so sorry you are going through this. My last pancreatic attack landed me in the hospital for three days and my GP seems to have worsened a bit since then. I know it's difficult and painful but try to be patient. Give yourself a break too. 🙂 It's okay to be frustrated, angry, sad, scared, etc. all those emotions are normal! You do have to be your own advocate - our bodies are all so different and we all react differently so let your doctors know if you feel something isn't right. Make them listen - you KNOW your body! If the duct is clogged you absolutely need surgery for relief. I know it's scary but you will feel so much better. If you have any questions feel free to reach out! I will hold you in my thoughts.

I am having a Total Distal Pancreatectomy and Splenectomy tomorrow @ Mayo. I have idiopathic chronic pancreatitis, none of the non surgical treatments have been helpful and I end up in the hospital with a flare every 2 months. I was not able to tolerate stenting, I was not able to tolerate any of the medications, such as Lyrica, or gabapentin, the nerve blocks made everything worse and in the end I am still having surgery. My duct is also very narrow with an ansa loop and an unidentified possible stone. My previous doctor removed my gall bladder to no avail as it was not abnormal and not causing any issues, I think he was just not sure what to do. When that team recommended a TDP, splenectomy, hysterectomy and appendectomy I decided I needed an 8th opinion and came to Mayo. I now live in Rochester and work at Mayo. I had been in healthcare already and I know you need to be your own advocate. Ask as many questions as you need to in order to feel comfortable it is Your body. You need to be comfortable with where you end up. Surgery was last straw for my doctors in Mayo and I am frustrated that I still need surgery, but we did try everything else first. They had told me they had only seen this maybe 2 other times, and the other treatments were successful. So, from my experience I would go through trying everything else first unless they can give you good reason why not to. I am also very intolerant and have my allergies to medications which is why I have had so many issues trying these other treatments. You are your best advocate, don't let anyone try to steam roll you into something you are not sure about.

Lisa,
It sounds like the correct process.
Are you keeping the head of pancreas and will not require insulin? Are you on Creon for the EPI?

I had a total pancreatotomy March of this year. The body and tail sounds like your situation. The head of mine had a very early found cancer nodule. I too struggle with reacting to meds so even though I had my own set of complications uniquely my own, surgery was the correct thing.

Let me know how I continue helping you. Mayo is great.

Toni

Thank you Lisa. I've started a video blog documenting my journey with pancreatitis, EPI and gastroparesis. I thought it would help me and maybe others in the process? Am I allowed to share the link? Thank you so much.

I had the surgery 2 weeks ago. The difference is night and day. Surgeon told me that my pancreas was loaded with stones, was hard, lumpy, and it was inflamed at the time of surgery. He ended up having to abandon the robotic assist and made a 6 inch incision as there were stones throughout the neck as well and he needed to see it to cut it off at the right place. I can say I felt immediate relief. I am so grateful for his expertise and I am so glad I pushed for surgery over trying to stent again. He assured me that with the amount of stones I had stenting would not have been helpful. The spleen was over 2x's the normal size but neither had progressed to cancer. I had a week-long hospital stay, am off work for about 1 more month, but I am feeling so much better. My son can't believe what a difference it has made. He said you just had major surgery and you look sound and move better and you stopped being nauseated and no vomiting. This episode of illness may actually be over! He's 17 and he has seen what this horrible disease has been doing to me for years. I just want to reiterate that we are all different, my case was not normal, my bloodwork didn't show my illness, my scans didn't show how bad it was, and I kept being told it must be fibromyalgia, but it wasn't. What works for 99% of us who have this awful ailment was not effective for me. So, I suggest you advocate for yourself, you are the only one who knows you and your body. Praying you get relief soon.