Patient Stories

⭐️ Thank you for visiting! These are some SMAS/GP/Dysautonomia stories as told by my friends and fellow sufferers ⭐️ 


RANDI M. (SMA Syndrome)

I grew up struggling with an eating disorder and even after ‘recovered’ was underweight. I recovered in 2001, with an intense but short relapse in 2004. Just some minor stuff on and off after that. In 2009 I started having symptoms of what a year later was found out to be an 80 percent dead colon (found by accident. Had a rectal prolapse and the ct scan for that showed my colon. Symptoms hadn’t been taken seriously). So digestive issues started then but i was told I would have lifelong complications (had 3 colon surgeries. Subtotal colectomy, ileostomy, ileostomy reversal), and that was my new normal. It was more bathroom issues than anything else, per se. Years passed and I had more and more medical problems. A head drop, spinal fusion, unrelated things. Still the same post subtotal colectomy issues but nothing worse. Fast forward to last January when I needed 3 emergency stomach surgeries. I had had obstructions and pseudo obstructions before but this time was a life-threatening bezoar, mainly plant protein. Had no symptoms prior until the week before when I was totally constipated and looking 7 months pregnant. I don’t remember much. Was unconscious for a mo. Don’t remember how I got to hospital, etc. My whole system shut down – acute kidney failure, etc – and I had a pulmonary edema that almost killed me as well. But basically it was found I had severe dysmotility issues. As soon as I was let out I had the ges and the gastroparesis was diagnosed. On ea clinic note my doc wrote smas was suspected but it was a few months before i had the upper gi series and it was diagnosed. I then got the jg tube put back in. I suffer from pain and nausea, am tube fed but eat too but not a whole lot and stick to mainly liquids and purees and really ground and chopped up foods. I was told after my colon surgeries that I wouldn’t really be able to puke much and I don’t know how that makes any sense but it is true and I definitely can’t self-induce. So my main symptoms are pain and nausea. I also have chronic small intestinal bacterial overgrowth and I am totally unable to tease symptoms from the different disorders apart. It frustrates the he’ll out of me. So I can’t really say how the smas affects me (as opposed to the other issues). The initially wanted to do surgery but I am so underweight and they are hoping weight restoration fixes it. I am sick of if all. Just had yet another tube change yesterday. Constant problems.