Looking to connect re Whipple surgery: What do you wish you had known?

@medicalhelp777 Hi and welcome to Mayo Connect. What specific diagnosis has you looking for a whipple surgeon? A lot of folks here have had the surgery and can offer their experiences.

You can do it, but do train and take one day at a time. Some background: I'm a 53 yo female who's 4 years out from an open pylorus preserving Whipple and mostly back to normal, but for occasional spasms and bloating. I don't take Creon regularly, but find Gas-X to help with the spasms which make me double over but only last a few minutes. I had ampullary leiomyosarcoma and didn't need anything but surgery to get it out; chemo scares me more than surgery.

So I'm glad I trained my core for the surgery some and am active most of my life. Good to walk around the hospital wing as soon as you can; I got out of bed day 1, and started walking day 2. Also, I found I didn't need home care (but I had my wonderful husband before and after his work), but it was good to have an option ready in case I had recovery complications. It's ironic that my high fiber diet causes me digestion issues after the Whipple, so I'm trying to chew more and eat smaller meals slowly, and avoid greasy foods, alcohol and carbonated drinks. A friend told me about drain holder bags that were lifesavers for showering (sold on Amazon). I had 2 drains. I found waisted clothing uncomfortable with the drains in, so I wore lots of loose dresses. I lost about 15 lbs after surgery, then regained it back. I have a desk job but was fortunate to have saved up 3 months of sick leave. One small complication was I discovered an allergy to surgical adhesives, so I had a gross, itchy belly rash for about a month. Ice packs, prednisone and antihistamines helped, but made me drowsy.

Good luck! We're so lucky to have the Whipple miracle!