My name is Jasmine; I am a 30 year old single mother of 2 boys, and I was diagnosed with gastroparesis on March 16th. My story is long but I’m hoping to meet people in a similar situation as myself, and to show people that they are not alone as that has been my biggest struggle with this disease.
I live in a very isolated, small town. The same town I was born and raised in. We have less than mediocre doctors, and a very politically ran, small hospital. I started becoming sick in Feb. 2014. I had multiple symptoms that a year later would lead to the discovery of a benign, but slow growing, inoperable pineal region teratoma (a brain tumor). I was sent to several bigger hospitals, underwent several treatment therapies, and in June of 2016 I left Mayo Clinic in no better condition than when I first went 2 months prior. I was in excruciating pain 24/7, I was vomiting/dry heaving 30-50 times a day, my athletic, 5’9”, 155lb. body dwindled into a skeletal 102 pounds. I could not put ANYTHING in my mouth w/o vomiting within minutes, and any acid my stomach produced would be expelled.
On my 3 day trip back to my home state I had stayed at a hotel in a town In Montana. At the hotel that morning, I went into cardiac arrest, due to low potassium. This would happen 5 more times during the next 21 months. For the first several months following that episode I was in the hospital every other day getting an IV bag of lactated ringers. Eventually, I had a PICC line put in and now I do this daily from my own home. During this time I would also fall into 2 hypoglycemic comas.
It was the last diabetic coma I fell into that introduced me to the doctor that has saved my life. After I awoke from my coma, 2 days later, and at a major university hospital, I was diagnosed with extremely sever gastroparesis, and an NJ feeding tube was placed March 16th of this year. I had my NJ tube in for 9 weeks; I was then given a GJ tube. While I was able to gain 12lbs, I was still vomiting frequently which would dislodge my tube. From May 15-Oct. 2 I had made 6 trips the the ER, 6.5 hrs away to have my tube replaced, and I would go into cardiac arrest 1 more time this August. On Oct. 11 I had a primary J tube placed.
My surgery was eventful. The surgeon cut through a part of my intestine he shouldn’t have and my 1.5 hr laparoscopic surgery turned into an almost 5 hr surgical intervention, leaving me with over 60 internal sutures, and a nearly 6” incision down my abdomen sealed with 19 staples. I’m now undergoing an extensive, extremely painful recovery.
4 1/2 years ago I was an active, healthy, happy person. I had my dream job, and was doing very well in my position. I ran marathons, participated in triathlons, went on backpacking trips through wildernesses, took my children on amazing adventures, and coached my oldest son‘s soccer team. I felt like I “had it all”.
2 years ago I became to ill to work. I no longer run, swim, or hike. I have zero energy to do literally anything with my children (in fact, my 12 yo just moved in with his dad because he said it was too hard to see me like this, and although I am getting legitimate nutrition now, I feel like crap the majority of the time. The pain associated with this disease is damn near unbearable. I still vomit when my stomach produces acid, and the PICC line I’ve been trying so hard to become healthy enough to have pulled, remains in my arm.
While I'm very much struggling to remain positive in my situation, I do make a genuine effort everyday to write down at least 3 reasons to be happy/grateful. I honestly feel like this helps make a difference. I learned that even though my list may only contain basic reasons to be happy (ie: I woke up, I have a home, I have nutrition), they are all things that many people will/do not have.
I’ve read so many of your stories and I feel inspired, and hopeful. I hope that sharing mine brings similar feelings to you all. I’m very excited to have found an organization to gain support, knowledge, and the tools needed to bring awareness of this awful disease to others!
Thanks for taking the time to read my story! :)