“Hi, my name is Rachel, @rach_blogs. I suffer from severe GI issues. which I’ve had my whole life. I was first diagnosed with gastroparesis and started on meds/diet change in HS. I was having horrible GERD, fullness, bloating, constipation, and lots of nausea after eating. After HS, I lost the ability to keep most stuff down. My GI hospitalized me and we ran a bunch of tests. The only thing that stood out were my motility issues. I was placed on an NJ (nasal jejunum tube-bypasses stomach). Eventually, I needed a GJ tube to vent my stomach to prevent vomiting and get nutrition. I stopped tolerating feeds, sadly, and my GJ tube flipped into my stomach. This led to TPN. Nothing was improving and my local GI didn’t know how to help. I was constantly being admitted for pseudo obstructions/impactions + tube replacements. No laxative/enemas worked. Stool would back up to my stomach and cause my feeds to go up. Eventually my GI team admitted me and put me under where they’d use scopes to remove my stool manually. I, also, got my g/j tubes separated to prevent all the flipping. My Dr sent me to Cleveland Clinic and they did an ileostomy and that relieved my colon, so 6 mos later, they took down my ostomy, total colectomy, and reconnected my small intestines to my rectum. I was finally able to go to the bathroom normally again. I also got off TPN for a year after being on it for 1.5 years.
In between those dates, I dealt with strictures, obstructions, intussusception, pain, nausea, and vomiting. I’ve had a lot of procedures, hospitalizations and ups/downs. I was diagnosed with chronic abdominal pain, pseudo obstructions, gastroparesis, malabsorption, intestinal dysmotility, and a paralyzed colon.
Although it’s been a hard journey, I’m very thankful for the medical interventions that kept me alive. Right now there is no cure for motility issues, so treatment is focused on symptom/nutritional management. I am the 0.16% I am so glad to be raising awareness about this wretched disease.”