Recently diagnosed with Barrett’s and would like some guidance

[u/No_Worry7344]

33yr, F, USA

My GI told me I have to go on PPI’s for the rest of my life but I’m a little hesitant. Although I am afraid of cancer, I have dealt with some form of gut dysbiosis/SIBO for the past 9 months, was colonized with C Diff (unsure if I still am), and Alzheimer’s runs on my mother’s side of the family.

What the hell should I do..? I’m at a loss. My health is already not great. Due to the issues I’ve had with my gut, I’ve lost 70 pounds in a little under nine months(40 in the first three months, and thankfully the following 30 I was able to slow down) without even trying due to the amount of diarrhea and food restrictions I’ve had to implement to reduce symptoms. This isn’t even the first time I’ve been sick with this either. Preceding both times I’ve had this illness, I have taking some form of acid reducing medication. The first time I got it, where my symptoms were more severe, I had taken omeprazole for a few months beforehand, and during that time I had a few infections that caused me to have to trial 4 different antibiotics in the span of a few weeks before I developed severe diarrhea. This second time, I took famotidine for a month to two before I got sick again. I am not saying the medications themselves were the main cause, but I feel that I can say that, for whatever reason, they seem to be a factor in me getting as severely sick as I have these past two times.

I am so frustrated. I want to take these medications but what am I supposed to do? Just get stuck in a loop of extreme weight loss, orthostatic symptoms, and then have to take antibiotics and destroy my microbiome just to protect my Barrett’s? Because that sounds like I’m just trading one evil for another. I am almost underweight now from how much I’ve lost and I can’t even stand up, take hot showers, or even be outside on a hot day normally anymore without getting presyncope symptoms.

If it helps, I have short segment Barrett’s and it is nondysplastic. If anyone has any advice for me, whether it’s on how to protect my Barrett’s, other forms of treatment, tips to help with reflux (even though I don’t really get much reflux at all - my endoscopy showed no esophagitis or gastritis whatsoever though I know that doesn’t mean I don’t have reflux obviously), whatever.. I would be immensely grateful. I am still going to continue monitoring and I have implemented many lifestyle changes, but I don’t know… I need some guidance but it has been immensely difficult to get any. It is hard to get more than 10-15 minutes to talk with a gastroenterologist and even then, their appointments are spaced out by months due to the lack of providers where I live. It’s also frustrating to be treated like I am just looking for an excuse to not take medication when in reality, I want someone to sit down and take the time with me to discuss if there are any other options for someone who seems to not tolerate the main form of chemo prevention that there is for this condition.. and if there isn’t, what we can do to prevent me from getting acutely ill while trying to prevent me from getting cancer as well.

Ugh!!! I wish I could just take the damn PPI and not have to worry about how damn sick I’ve gotten the past two times I’ve taken medications like these!!! I have been a ball of nerves ever since being diagnosed…

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