I was first diagnosed in 2018. I never even heard of it until they said that was what it was. I started vomiting really bad in February of 2019 and I went back and forth to the hospital for 3 months until I lost 50 pounds and had to be put on a feeding tube. I was put on an nj tube that had a bridle and that broke after 2 months of having it so we had to get it stitched into my nose so it would stay in place. I had my nose stitched 3 times before I told them after 3 months of having it I wanted a gj tube. So we switched me to one in August 2019. Before April 2020 I had went through 21 gj tube exchanges and procedures. I for the last 2 months of having the gj tube I had a lot of pain. So I found a doctor to send me to a surgeon to have a separate j tube and g tube placed. I got those tubes on April 1st and I have had since then except an exchange of my g tube and that was for pain. But these tubes had lasted me 4 months and some days. About 2 months after getting the j tube placement I ended up back in the hospital with severe nausea, pain, and vomiting. So we took me off my j tube feedings to see if giving my stomach a break would help but almost a week there I was still nauseous and vomiting. So we put a port in and started me on TPN . TPN has given me so much strength and mobility, I feel like a new person. I am on IV zofran which is the only nausea medication that works and IV Protonix. But I some how got an infection of MRSA staphylococcus infection in it and had to have it removed and I am waiting to get a new one so we can start TPN again. I am hoping I can find something to help me eat a little more without being 2 nauseous and getting sick. This disease sucks but I have joined support groups and have found a lot of friends who actually understand what I am going through.
