So, the appointment with the surgeon has come and gone. It ended up with me signing a bunch of consent forms and agreeing that I will let them cut me open and dissect my pancreas. Apparently I'm letting them take out my gallbladder for good measure too. At this point, for better or for worse there is a decision, and whether it was really the only one that I had doesn't really get to matter right now. Some of the important things are figured out, like, even though I don't have an exact date, it will be at the end of March. That's for a few reasons, the first being so that I can take courses this semester. The second being more silly but I don't want to be in a hospital on my birthday. I have a conference to help run that weekend.
The procedure that they are doing is called a modified Puestow procedure. It's a bit funny because I've explained it to people so many times over the last few years since they first started proposing it, but there were aspects to it that I didn't understand until I went over it in much greater detail with the surgeon this week.
So, the reasoning behind why a Puestow procedure would be helpful for me means a bit of an anatomy lesson. A lot of textbooks say that your pancreas looks like a spongy finger, which is mostly true. Your pancreas also has this main duct inside of it that runs all the way through it that collects the digestive enzymes it makes and I think insulin as well and funnels that into the rest of your body through the common bile duct. That is how everyone else's pancreas works. If you are me, or my siblings, first of all your duct is shaped wickedly different from other people, that is something that seems to happen over time with pancreatitis. It means that my ducts can collapse on themselves. When that happens, all of the enzymes and digestive stuff in my pancreas gets super concentrated. One of the minerals that is in the digestive stuff in anyone's pancreas is calcium. Calcium is a lot like sugar. When there is a normal amount of it, it is in liquid form. When it gets concentrated (like when the duct collapses) it turns into a solid state, and bang, pancreatic stones form. Stones are one of the things in pancreatitis that can cause a lot of the pain.
So, the Puestow procedure attempts to fix the problem that allows the stones to form in the first place, and the tiny ducts a lot of people with pancreatitis have that keep any stones that form from being able to get out of the pancreas. They go in, and dissect the pancreas open reaching that duct inside of the pancreas. From there, they cut a piece of small intestine making one incision. They then dissect part of that piece of intenstine too so that it is opened up. Then they sew the opened up piece of intestine around the edges of the opened up pancreas, making a huge duct. Then to keep everything nicely running together the site of the cut up intenstine is joined back into everything. The goal is a bigger duct that can't collapse on itself the same way, and also this huge duct into your intestines as opposed to a small one and the common bile duct. In my case they are also going to probably take out part of the head of my pancreas too because that is where my ducts have some of their worst constrictures.
The biggest thing with this procedure is that it takes a huge gamble on stones being the cause of the pain in pancreatitis in any given person. For me, I would tend to agree that pancreatic stones over the last few years have become a major contributing factor for what is going on. For those who stones are a minor involvement in their pain (There are lots of reasons why someone with chronic pancreatitis might experience pain) this procedure isn't going to help a whole lot.
It's also a major major surgery. 8-10 days in the hospital. Possibly overnight in recovery. Days in a step-down unit, finally a typical hospital room after. A billion tubes hanging off of you which makes me really squicky. Catheters, NG tubes, an epidural for the first few days too, so a catheter in your spine too for bonus fun. Probably some form of PCA (Pain pump too), and eventually just plain old pain meds as time goes on. I've had surgery before, but this is on a whole different level.
So, it's been weird, because of course I'm scared and of course I'm wondering if I'm doing the right thing. At the same time, nothing less invasive is helping anymore. I had a good conversation with my GI doctor this week about how we've hit the wall with pretty much anything else there is to try. I don't like how it feels to have no idea how I'm going to be feeling on any given day and knowing that it's probably only a matter of time before I end up back in the hospital. I feel like I'm making the right decision, and I'm relieved to that a lot of it is more on my terms, it's just going to take a lot of time to get used to this idea. As I think about it more, I'm sure I'll have lots more to say about it.