Over the past two weeks, Zack’s intestines have been a real pain in the gut. He had been having some intense belly pain and little output. He did not have distention or vomiting, so I was not overly concerned when it started. But then he started missing school. Three different days over the past two weeks. The pain kept him home and on the sofa or on the floor – see the picture below:
As you may know, Zack does not nap and he does not sit still…unless he feels pretty lousy. The other concerning thing about these pain episodes was the sheer volume of output that occurred once it resolved. Seriously. When Zack loses fluid that quickly his sodium levels tank fast. He looked terrible. Luckily, his doctors have armed us with rescue doses of his electrolyte replacement and we know to pump it into that little body of his. This seems to work, but it still takes a lot out of our guy.
The last time this happened, Zachary’s school nurse said he really didn’t have any bowel sounds or very, very faint ones. He was very uncomfortable, so we reached out to his GI doctor about our concerns. He decided that Zack should have a baseline fluoroscopy to see what was happening. Our plan is to have an urgent fluoroscopy the next time he has that intense pain. The problem is that we live a little more than an hour away from Walter Reed in normal traffic. Getting him there while the obstruction is in full swing could be hard since, so far, they seem to resolve on their own. If we can see what is happening in the middle of the intense pain and compare it to his baseline fluoroscopy, maybe we will glean some new information.
Today Zack had his baseline fluoroscopy. He has had many of these done in the past, and we have never before seen anything that helps explain his pain. When we went in this morning, I prepared Zack that this would likely be our outcome once again. He asked the radiologist to, “Please find the reason my belly hurts.” A tall order for sure.
Surprisingly, we actually found some issues today. There was some bowel dilation shortly after the stomach with a transition zone or narrowing of the intestines right after that. For awhile we thought there might be two spots, but I think it was decided that we were looking at the same spot from different angles. I’m not really clear on that. After that spot, the barium made it through the intestines appropriately until the end by Zack’s stoma where it pooled for an extraordinarily long time. It took five hours and thirty-five minutes for the barium to come out of Zachary’s stoma. The radiologist said she had not seen it take that long to come out of a patient since she was a fellow. I did not ask her how long ago that was…it seemed inappropriate.
The radiologist felt that the pooling of the barium in the spot near the opening of the stoma was most likely due to dysmotility. I do not think that is the case – and, as you know, I spent many years in medical school…. It feels wrong to disagree with a doctor, but let me tell you why I do. First, I cannot let myself even entertain the thought that Zack’s small bowel has poor motility now. I just can’t. Second, Zachary’s ileostomy has so much out everyday and usually so quickly that this does not even make sense. If his motility was slow, I do not think we would have this volume everyday and struggle so much with low sodium issues.
My theory is the same as his surgeon from Boston and possibly his GI here. I should ask him. I know we all agree he is intermittently obstructing. I think his stoma is prolapsing internally. Meaning, I think it is getting stuck on itself near the opening and preventing output from coming out from time to time. His stoma was pretty swollen once the barium went in and was trying to prolapse, but did not. It goes along with my theory and I want it to be right. So there.
So what does all of this mean? I actually have no idea. I know that according to our visit today, it appears we have two separate issues going on. I know that nobody wants to operate on Zack unless absolutely necessary, but the dilation and narrowing of the intestine seem like a potential surgical issue. When Zack and I left today, the GI team was meeting in radiology for their weekly review of all the pediatric procedures completed there this week. I know Zack’s GI will be reviewing the results. I have no idea what to think or what to expect. My guess is that as long as these things continue to resolve on their own, we will wait and see. But really, I know nothing. Welcome to my world.
As always, though, my hope is that Zack’s doctors will help turn this face:
Hug your babies!