Gastrostomy Surgery Is In Sight.. (August 2024)

Hey guys, I didn’t think I’d have an update to share already but it seems things have moved pretty fast since my last blog. In fact, everything is moving much faster than anticipated. I saw my GI consultant last week, and in light of my new diagnosis of moderate dysphagia, combined with oesophageal and GI dysmotility, she now thinks it’s time to go ahead with a PEG tube assessment and hopefully get me on the waiting list for a gastrostomy.

Before that though, I had to go for a video fluoroscopy organised by my speech & language therapist, in which I had to consume barium-coated foods. The results were rather interesting, revealing that the liquid I had ingested was regurgitating and gathering in my throat, leading to dysphagia. We already had an idea of what was happening based on my symptoms, but it was fascinating to see it. It was also good to have my suspicions confirmed. We’re going to try changing my reflux medication to see if that lessens the symptoms, but other than that, I’ve just been advised to be more careful when swallowing and stick to soft, well moistened foods. Fortunately, I’m used to being cared with what I eat due to my digestive problems, so I shouldn’t have many problems with that. 

I also had my gastrostomy assessment with the nutritional nurse this week. The consultant wanted to put it off for a while as she hadn’t treated anyone with Marfan before and she wanted to be 100% certain that the procedure was in my best interests. However, I’ve had NG tubes for 18 months now and they aren’t pleasant to put up with, so we need to start thinking about more longer term options. The nurse did my obs and asked for clarification of my health history, and then she went on to explain the PEG procedure in more detail. PEG stands for (Percutaneous Endoscopic Gastrostomy) and during the procedure, an endoscopic camera is placed in your mouth and down your oesophagus. The camera helps the doctor visualise your stomach lining to ensure that the feeding tube is positioned correctly. When the doctor can see the stomach, they make a small incision in the abdomen. Then they insert the feeding tube through the opening and secure it in place with a sterile dressing around the site. The whole procedure takes less than one hour and this will allow me to receive nutrition and hydration directly into my stomach through the feeding device. 

After the assessment, they sent me home with a leaflet all about gastrostomy feeding tubes and told me they’d be in touch in a few days to see how I feel about it, and if I’ve decided to go ahead with it. I’ll be honest, I feel more than a little nervous about it all but I know it’s for the best in the long-term. Who knows, maybe my next update will be about The procedure and how it went. Fingers crossed I Don’t have to wait too long and it all goes well.. X