First the headline: nothing has gotten any better.
Maybe a month ago or so Eva developed a new pain (because that was exactly what she needed). It is in the upper right quadrant of the abdomen. There is good news associated with this: apparently there is exactly one thing that causes pain there: the gallbladder.
There’s also another another new symptom that seems gallbladder related: intense pain for 10 – 15 minutes accompanied by discharge of a cola- colored fluid in Eva’s vent bag (normally the discharge is a bright yellow).
Following an ultrasound, it was confirmed that there are some issues with Eva’s gallbladder: sludge, stones, and a 6 mm polyp. The polyp is apparently a long-standing thing, and therefore not worrisome in the way it might otherwise be. Stones and sludge are not inherently problematic, unless they are causing pain. Which they are. So we see a surgeon to see what he thinks.
We saw the surgeon yesterday. He thinks Eva is complex. With someone else, he would be giving 97% to 99% odds that removing the gallbladder would fix that pain. With Eva, he feels like it is a toss-up, but there’s no other treatment. With some trepidation, Eva is going to go ahead and schedule surgery to remove the gallbladder. Actually, she has scheduled a call with a scheduler to schedule the surgery. Streamlined, this process is not.
We have no reason to believe that this will fix the intestinal pain that prevents her from using her J-tube for feeding (though it would be lovely if it did), but suspect it will fix the additional pain (which is mainly around a 7 on a 10-point scale) associated with the gallbladder. And less pain is better (not our family motto, but it might be in the running). Also, it seems like doctors would like to get the “extraneous” pain dealt with before focusing on the intestinal issues more closely (in part because no one has any more good ideas on the intestinal pain).
Speaking of intestinal pain and getting more data: we met with an interventional GI this week about the colonoscopy and small bowel enterography mentioned in my last post. The key question was how to do the colonoscopy prep. For those who have done a colonoscopy prep, little more needs saying. For those who haven’t, there exist two options for colonoscopy prep: high-volume and low volume. High volume colonoscopy prep involved drinking 4 liters of a solution that flushes everything in your GI tract out your anus. By the end, you are putting out clear liquid, and therefore when they stick a cameral up your butt, they can see pink flesh with no other matter to block the view. It’s about as wonderful as it sounds. Needless to say, getting 4 liters of anything into Eva is a non-starter.
But then there’s the low-volume prep: that’s only 2 liters. With the same result. Which unfortunately, is also 1.75 liters more than is really imaginable for Eva. Also, the GI says that people with slow motility (e.g., those with gastroparesis) tend to do better with the high-volume prep because it is harder, not easier, to flush everything through the system.
The end result is that a colonoscopy is not a good option for Eva. We did ask what she thought might be an option to try to get more information about her intestines. The only option she could come up with was surgically going in and taking a look, which she felt was rather a big deal. We agreed. So for the moment, we are going to wait and see what symptoms remain following the removal of the gallbladder.
Step by step, we keep moving forward. But this is really a lot less fun than it looks from the outside.