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Anyone have dumping syndrome post esophagectomy?

Esophageal Cancer | Last Active: Apr 24 9:15am | Replies (47)

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Profile picture for dkoehne @dkoehne

@jayefaye my experience with Dumping Syndrome mirrors yours quite a bit. Almost any meal raises my blood sugar dramatically, then causes it to plunge. If I don’t get in front of the drop with some candy, juice or more typically a Glucose Shot (liquid) or Glucose Gel I can get sweats, disorientation and in extreme cases even hallucinations. (Sweating soaks through all my clothes and leaves me shivering until I shower and change.).
I have tried arcarbose with no relief. I now wear a Libre 3 Continous Glucose Monitor which gives me real time levels and helps me stay ahead of drops and avoid driving when my sugar is in flux. The new app also has an “assist” AI app that lets you photograph meals and predicts the expected impact which is helping me modify meals. I’ve reluctantly, sadly reduced carbs and focus most meals on protein and vegetables.
I will be three years out from surgery in mid-April. I am 6 feet tall and pre-surgery was a tubby 235-240 lbs. At my lowest a few months post surgery I was about 145 lbs. Currently I am in the low 160’s day to day and able to enjoy the occasional beer, but carbonation is still not my friend. In the last few months I have finally been able to sleep reasonably flat with just a couple pillows under my head so things do improve.

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Replies to "@jayefaye my experience with Dumping Syndrome mirrors yours quite a bit. Almost any meal raises my..."

Hi. I'm just on 3 years now also. Was stage 4. Things still change constantly but currently I am dealing with abdominal pain following my evening meal, even just small amounts and also random late dumping. I get sweats, shakes, feeling disoriented and generally unwell. It happened at work yesterday morning and I quickly had 3 glucose tablets and a snack bar. Luckily it passed fairly quickly although left me feeling a bit off for the rest of the day. Thankfully I was not driving at the time. It just hits. I used to get this right back at the beginning then it stopped. Having it now recurring sucks.

@dkoehne Thanks for taking the time to share all of that, really appreciate it. A lot of what you described sounds very similar to what I’ve been dealing with.

Interesting to hear about the Libre as well, it sounds like a really useful tool for staying ahead of things - I'll see if we have anything similar available in New Zealand.

Good to hear you’ve managed to stabilise your weight a bit too, that’s encouraging. All the best with it, sounds like you’ve found a way to manage it pretty well over time.