- CASE FILE
I have severe gi dysmotility and rely on tpn. My debilitating symptoms keep me from enjoying anything. I’m 18 and want to live again.
ABOUT THIS CASE FILE
Early 2017 I had a bad case of flu, experienced difficult hormonal changes, took hydrocodone for dental implant (6/17), and was in a car accident (5/17), all before having my first ileus (7/17). The ileus resolved but my gut function did not and my appetite slowly disappeared. Early 2018 I had lost 20lbs and could barely sip water. My joints ached all over and I could barely lift my arms to shower. I was diagnosed with Gastroparesis (3/18) and the meds helped for a short week. I had intense abdominal pain and had to force enough calories to keep from being hospitalized. A lot of testing only showed tiny ulcers in the ileum. My gallbladder was barely functioning and removed (4/18). The pain increased, I forced ensure a few ounces at a time, and at the end of 5/18 a ct showed median arcuate ligament syndrome. I had a lap procedure to release compression and remove the ganglion nerve bundle (6/18). At my post op the surgeon said if my severe nausea persisted to look into pots. I made myself eat very small amounts and did ok til 8/18 when all of the MALS symptoms slowly started coming back. Bloodwork/testing showed adrenal insufficiency and hypothyroidism. Meds did not help my symptoms. By 9/18 I was hospitalized for extreme diarrhea and weight loss, and had to be put on tpn for nutrition. During this time my dysautonomic symptoms increased greatly. It was thought that a celiac plexus nerve block may help me get over the jump til my body could start healing. On the nerve block my pain went down, I had energy, and I could eat for the 10-12 hours it lasted. It was decided that open MALS surgery (10/18) would be safer to remove the damaged nerves. Four days after surgery I woke up hungry for the first time in over a year. I was able to eat small amounts and worked my way up to 1800 calories and was able to go off TPN. By Christmas I started getting the full feeling again and failed a gastric emptying test again. I was diagnosed with hypermobile Ehler’s Danlos 1/19 and the smart pill showed my colon was so slow it was not functioning. Meds did not help but we wanted a second opinion and waited for motility testing. I started having bad skin reactions to heat and random sensitivities so it was mentioned that mast cell activation syndrome was commonly seen with EDS patients. I started meds to see if they would help (4/18). I also started physical therapy targeting my EDS joint pain, instability, and subluxations. Motility testing (6/18) showed my gi muscles were working but every time they moved I had severe pain. I also had a tilt test that showed orthostatic intolerance or dysautonomia. I finally got to see neuro gi and was explained to have JAG-A, or joint hypermobility/autoimmune dysfunction/gi dysmotility/autoimmunity. He explained that dysmotility is commonly seen in hEDS. Their particular autoimmune panel did not reveal my autoimmune component so I did not qualify for their IVIG research trial. I recently saw 2 pots specialists and am trying some new meds and more saline infusions to help reduce my sympathetic tone. I also got a port and gj tube placed so that I could try to run any j feeds my body would tolerate and relieve gastroparesis symptoms from draining and releasing excess air. I will see a gastric pacemaker specialist in another month. All of the doctors try to help me but none of their meds help me be able to intake or have any symptom relief that leads to any increased quality. I spend my days in pain, never feeling well, and very discouraged. The days consist of doctor appointments, meds, and other medical needs. We are seeking a doctor that will search for my autoimmune component and consider IVIG infusions since nothing has worked. I have been sick for over 2 1/2 years and want some quality of life. I am 18 and would love to be able to enjoy being outside, eat something healthy, drink water and feel refreshed, ride my horse again, walk my dogs, or not dread getting a shower. We have desperately tried to find help but haven’t found the right doctor to look at my case as a whole. I want to to have hope.