To Puestow or not to Puestow

Pancreatitis
#1

Hello everyone,

After corresponding with Durga I decided to write and share what is going on in my life right now.

I have had a series of stents for the last 6 months. On August 22nd they took out my stent, found stones and sludge. They were able to clean it all out and left the stent out for a trial period.

The stent exchange before this one, when they took the stent out they intended to keep it out. But after they took it out my duct closed right up again. I think they may have watched it happen! It was at that point that my doctor (Dr. Chen at University hospital in Denver) started thinking that he might need to refer me to a surgeon for a Puestow.

Since I had the stent out on the 22nd I had a couple of pain free days. But the pain has slowly come back and is intensifying.

When my original doctor, in Colo. Springs, found out that there might be a Puestow in my future, he had a fit. I went in to see him to see what he had to say. He is treating a case just like mine and basically they go in every 6-8 weeks to clean, zap stones, and stent if necessary. He told me that a Puestow is the beginning of a down hill slide.

On Sept. 17th I have a face to face with Dr. Chen in Denver to see what his plan is at this point. I need to go in for another procedure, but at this point am reluctant to do so. I just am not ready to face another one right now.

Part of my reluctance is the fact that they have a terrible time getting the IV in my arm. Last time I put my foot down and told them that I wanted the anethesiologist to do it. They do it in one stick. It is getting harder and harder for the nurses to do it. I have never been reluctant to be stuck, but have developed a dread of it.

If you have any experience with the Puestow please share with me. I want to be as informed as I can if I have to make that decision.

Please forgive the length of this. I needed to unload. I knew you guys would understand. I need to quit unloading on my family and friends. I think it is too much for them.

God Bless and Keep the Faith,

Vonnie

#2

Hi Vonnie,
My daughter had a Puestow done last Oct. -she had spent the previous 8 mths in and out of the hospital every 2 weeks. She was 18 at the time and barely graduated. But she did it-with a central line in her and living on TPN. She had two ERCP’s done at Johns Hopkins(which is where her specialist is), we live in Pa. within 3 mths of each other. They never helped with the pain. And again, after a week or so, ended up back in the hospital with higher levels of pain.
I don’t understand what your dr. meant by a slow downhill-it was the only option for our daughter. Her surgeon would not take out the pancreas because she is not diabetic, and her pancreas is still functioning the way it should. Well, she had a rough period after the surgery, mostly due to the incision-it had a few infections and she also got sepsis from a bad IV at the hospital. But the good news is-she started college 2 wks ago(locally) and is doing much better than last year. She is glad she had the surgery, she is not pain free yet, but we are hoping that time will help that. Her pain is much better and only really flares when she eats something bad.
She is on mild pain meds every day and believe me, we can live with that. She is even going to try out for cheerleading at school again. The surgery is very big-don’t let anyone tell you otherwise. It is major surgery and your gastro tract is changed. I was told that that too takes time to heal, even if the surgeon tells you everything looks good to them, they are just looking at it surgically. All the years of pancreatitis takes its toll on you and it takes alot of time to let it heal. So we are being patient and it does help that this is the LONGEST stretch she has been out of the hospital in years.
Hope this long winded message helps you, sorry it is so long. Please do what you feel is the best decision for you and talk to people who have had the surgery more than the doctors. They are the real experts!!!
Good luck to you and please let me know if I can help.
By the way, my daughter has hereditary CP-so it never really goes away. My husband has it too, but not as bad as her-her ducts were her biggest problem. Good luck, take care. Terri