Please, please share what treatments have helped. Desperate.
TW for mental health I guess.
I’ve had rumination syndrome since I was 12. I’m now 21. It developed as I was anorexic (but not bulimic) and hasn’t ever gone away. I recovered from anorexia within the year, but the rumination syndrome stuck. I developed anorexia a second time when I was 17, and I admit that I used the rumination syndrome to my advantage. I recovered at 19. The rumination syndrome obviously stuck.
Because it developed while I was anorexic, I suspect that it may have developed as something like a PTSD (for lack of a better term here) reaction to food. I was TERRIFIED at 12 of calories (to a ridiculous extent). But by now, it’s completely ingrained as a reflex. Whether or not there is somatic disregulation every time I eat, I can’t be entirely sure, but I don’t have any conscious anxiety relating to food other than about keeping it down.
I regurgitate just after eating and sometimes hours and hours later. For example, last night I had dinner around 8:00. I’m exhausted all the time, and I fell asleep by 9:00. I woke up at midnight. Then, I regurgitated “everything” I had for dinner.
I have MILD gastroparesis but my digestion after 4 hours was 14% left instead of the normal 10% cutoff. I think it has been caused by the rumination syndrome rather than the rumination being a result of gastroparesis…
My gastric emptying seems to me to be normal and abnormal on certain days. As in, sometimes I feel that my food isn’t digesting at all, and sometimes I feel that it digests extremely quickly. Regularly, I think it’s a bit slow but not drastically.
There are many weeks where I can’t keep any food down for days. Sometimes I’m unable to keep down anything but water. Sometimes I throw up water. Sometimes I can keep down large meals that I’d usually vomit. There doesn’t seem to be any rhyme or reason to how any of it happens.
Right now, I keep down probably 1 meal every other day. I try to keep them calorie dense and also have things like chicken broth (can’t tolerate bone broth) with olive oil, and lots of supplements.
I’m desperate for help. My hair is falling out. I am exhausted. I don’t live normally in any sense. Many days I spend eating and throwing up until I can keep something down. Many of these days I am entirely unsuccessful. Including blended foods like smoothies and soups.
My weight is low (though I’ve kept it normal at certain times over the years somehow).
My doctor wants to treat me focusing mainly on gastroparesis which I think is really stupid. She wants to do it with off label anti depressants that have so many side effects—sedation (I’m already exhausted and so fatigued), seizures that can be permanent, and worse depression or suicidality (I already have both to the furthest extent that wouldn’t result in action). I’m reluctant because I don’t think the mild delay in gastric emptying is the core problem. And I don’t do well with SSRIs at all (I’ve tried many for the mental effects and all of them affected me badly).
Anyway I’m wondering… HAS ANYONE FOUND RELEIF? ACTUAL HELP?! PLEASE SHARE.
I think that if this goes on much longer, I will end up hospitalized very soon. And I don’t think my body can take it for more than 1-2 years more (I’m sure I’ll be dead.)
I’ll try anything. Please share.