Health Update - Surgery Is Scheduled

Yesterday was my surgery consultation, and after talking with my doctor about my symptoms he's decided against the gastric pacemaker, and is recommending both a pylorplasty and a Nissen fundoplication. Although this makes the most sense for my case, I was- and am- pretty shocked. I've been gearing myself up to accept the (very expensive) pacemaker surgery, and I hadn't even thought about a pylorplasty, let alone a fundoplication.

When I first started seeing this surgeon I thought that GERD was my only problem, and because PPIs and reflux meds have never worked for me, I thought a fundoplication was my only option for relief. I knew and know it's a controversial surgery, but I couldn't take the symptoms anymore- especially the regurgitation. I got mixed results during my reflux testing, and during this period of time (I've been seeing this doctor for about 7 months now) the nausea that I've been suffering from for as long as I can remember started getting worse and worse. As did my bloating and burping, in which I'm able to taste the food I've previously eaten for hours and hours. I had lived with those symptoms for so many years I thought they were normal.

After discussing these symptoms with my doctor he told me that he suspected that I had Gastroparesis (GP) as opposed to GERD. And GP can cause regurgitation and reflux. I've had a prescription for Reglan, a stomach emptying medication, since my pregnancy and it's always helped me. But there are very serious side effects associated with it's long term use including tardive dyskinesia (incurable facial ticks) and it has a blackbox warning. My doctor put me on a "safer" medication called Domperidone which I had to get from a special pharmacy because it's not FDA approved and it just didn't do much of anything except make me lactate profusely, and since I've weaned that was a major problem. For the record Reglan makes me lactated too but not as much. I've resigned myself to the fact that I'll never stop lactating.

To get a definitive answer about the GP I did the SmartPill test where I swallowed a (massive) computer pill that transmitted my gastric emptying time. Somehow it came back normal. I was devastated that the diagnosis I thought answered everything might not be correct. I had no idea what else could be causing my symptoms. After I weaned R I was able to do a Gastric Emptying Study where I ate radioactive eggs and had x-rays to see how well I was digesting that. When I went into the doctor's office to finally get the results (I had to put it off after getting a stomach bug- so fun) I was totally prepared for him to tell me that it was normal, that all my symptoms were in my head, and that I should probably go to a mental hospital. Thankfully I was wrong. Stomach emptying times can vary significantly in GP patients, being normal one day (or one time of day!) and being abnormal the next. But my GES made it very clear, I had GP.

With the Domperidone not working and my reluctance to keep popping Zofran (a prescription nausea medication) and Reglan 4 times a day we decided to look into surgery. That's when I thought the gastric pacemaker would be the best fit for my situation because the nausea was just out of control (still is.) But the pacemaker doesn't help your stomach empty, so the only symptom it could eliminate was nausea. The bloating and burping would still be around, and I'd likely still need a stomach emptying medication- the medication I was trying to avoid the most.

That's when my doctor recommended a combination of a pylorplasty and a fundoplication. He said that when he did my endoscopy he didn't see a hiatal hernia (which is interesting because my last GI doctor said he saw a prominent one) but he did see that the valve at the top of my stomach was loose and not functioning properly. Although the GP causes regurgitation and reflux because when the stomach contents can't go down they try to go up, the faulty valve wasn't helping. But these surgeries are a big deal. And I have found very, very little information about them being used together to treat GP. Here is a very simple explanation of them:

Source

In a pylorplasty the doctor cuts the pyloric sphincter muscle at the bottom of the stomach, and this helps food pass out of the stomach more easily.

Possible complications: "Dumping syndrome", diarrhea for the rest of your life, bile reflux

Source

In a Nissen fundoplication the doctor wraps the upper portion of the stomach either partially or completely (my doctor is recommending a complete wrap for me) around the esophagus to prevent regurgitation. 

Possible complications: Not being able to burp or vomit (possibly forever), bloating (from not being able to burp),  trouble swallowing, the wrap coming undone

As you can see the possible complications from these surgeries are very serious. The doctor said that most patients improve significantly, some patients improve completely, some patients don't improve at all, and a very small number of patients develop the complications I listed above. I could either wind up almost completely better, or I could wind up even worse than before. Although the numbers are skewed towards feeling better, I have to take the threat of the complications very seriously.

I know that the fundoplication especially is a very controversial procedure, and the majority of people lose the ability to burp or vomit. But that doesn't mean your body doesn't try to- you either get totally bloated with gas because of the former or dry heave because of the latter. But the fundoplication is important because one of the more common side effects of the pylorplasty is bile reflux, which is HORRIBLE. I've refluxed bile a few times in my life and it is AWFUL.

Today after a gallbladder ultrasound (they wanted to make sure it was ok, and it is) I scheduled the surgery for April 21st- a little more than a week before the party we're planning for R's birthday. I'm going to try and push the party back another week but it's likely I will still be in bad shape at that time. I'm pretty heartbroken. Recovery is going to be long and difficult and because it can vary so much from person to person I have little idea of what to expect.

I am incredibly nervous. This surgery will change my life and possibly not for the better. It's a decision I've been agonizing over ever since my appointment- as my body agonizes over eating any kind of food. Although the surgery has been scheduled I have a lot to think about, and I'm not taking this lightly. Positive thoughts are most appreciated- I'm trying to think them myself! :)