Musings of a Marfan Mom

Endoscopy, Part 2


(Part one of the story is here.)

About a week after I got home, the hospital GI called me with my test results. Unfortunately, I tested negative for any virus or other infection. This meant one of two things: 1) my NSAID medication that I take occasionally had caused the ulcers or 2) my nissen fundoplication was coming loose and the resulting reflux caused the ulcers.

The GI admitted that he did see my nissen opening up multiple times during the endoscopy, and that it could very well be causing reflux enough to cause the ulcers. However, he didn’t feel the nissen needed repairing yet.

To backtrack a bit, I had the nissen as an infant, as part of a repair for my congenital diaphragmatic hernia. As a result, I have been unable to burp or vomit nearly my entire life. My parents were told the surgery might loosen one day, and over time I have gained the ability to burp very occasionally…maybe a handful of times a year. It wasn’t until I met with a GI here in February that I learned nissens more or less always come undone and have to be repaired. I came to him because I felt like the nissen was loosening more than it had in the past as I was having frequent abdominal pain.

I’ve tried some meds over the past 8 months and run a few tests, but at my last visit (a couple of weeks before I was hospitalized), the doctor declared everything with my nissen perfectly fine and he said he had no idea what was wrong with me. So, all of those symptoms combined with what the GI from the hospital told me about the state of my nissen leads me to believe that it might be time for a repair, regardless of what my original doctor said. My theory is that Marfan tissue affects it differently, and that a non-Marf with a nissen identical to mine would not be as symptomatic as I am and therefore not require surgery.

Baby J and I will be traveling for his echo and for him to see a pediatric GI who specializes in connective tissue disorders at the end of this month. I am in the process of getting together paperwork to meet with a GI surgeon for a consult, if not at the same trip then one soon after. I could be wrong, and the ulcers have been from my NSAID, but my gut (no pun intended) is telling me it’s time to consider having the nissen fixed.

Have any of you had a nissen repaired?

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  1. When are you traveling?


    marfmom Reply:

    I’ll send you a message!


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