I DO NOT HAVE CELIAC DISEASE, the GI had convinced me that I had it then they did the blood work and I DO NOT.
I now have to go in to endoscopy in the middle of November and have a scope go down my throat and take samples the way back up from my lower intestine.
We are looking for CANCERS because something is causing the Pyoderma Gandrenousm. Also the GI informed me that my normal for bowels and eating habits is in fact not normal at all. I have liquid stool most of the time and usually am only able to keep down one light meal a day and some crackers. I guess it’s not IBS like diagnosed before if its constant. She still said that I have IBS but there is also something more going on.
I was hoping that It would be some disease, cancer will be a bad diagnosis and I am not sure how my husband would take that. He is already going through so much with all of my other chronic illnesses and my chronic pain.
I have been waiting for months to get in to see all of these different doctors who are all trying to put the puzzle together. I have at least two days a week with appointments all day and then other appointments around my husbands work schedule. I can’t drive.
My back diagnosis is that I have a slipped, fractured, herniated bulging disk and I just really need injections to bring down the swelling. They finally believe my pain, I am not just some 25year old, looking to get high. I take only what I need and honestly I feel like I need more at the end of the day. I am in major pain, if I did not have my family I would probably be staying in the hospital continuously for pain management and treatment.
I will require surgery if the swelling is not contained. The back doctor/ pain management needs clearance from the CIC to do an epidural. It could take months for them to see me. So far they keep telling me that I need to be seen here or there first because something is mostly the underlying cause of the pyoderma. So more than likely I will have to have spinal surgery after the PG is treated.
I am in the largest circle jerk of doctors while my health and sanity are deteriorating. I am being sent back and forth and told that some other doctor will treat this or that. I need to have better control and find my voice and make a doctor get on top of all of this or I am going to die waiting.
I have a gastrointestinal doctor, Pain Management/ spine specialist, Rhumatologist, dermatologist, Neurologist, Breast Specialist, Physical therapist, Therapist, and I see my Primary all of the time. I am sure that I have seen others but at this point I can hardly keep their names and faces straight.
I filed Medically Exempt and Medicaid confirmed and authorized it. I am supposed to have a team of people on top of my health stuff and have been calling every day and told that someone would contact me for the past month. The team is supposed to consist of a crisis person, a doctor, a 24hour nurse, and I think someone else. I am also supposed to receive help with transportation so my husband can miss less work. We are really struggling.
With the PG I can not have any surgeries. Did you know that a tooth extraction counts as a surgery? I can not finish my dental work, can’t have them start anything new for the nest year. I was planning on getting on top of things before I got so sick. I wanted to have the Gastric Sleeve done, to get my tubes tied, my tonsils need out, and I was planning a breast reduction before it exploded.
All of my doctors have diagnosed so much but none of it is in the list for possible PG causes.
I am sick of all of it, I am sick, I am tired and I just want to get better for my family.