Lynda Lynda
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The nurse practitioner at my gastroenterologist office took me off of my one 3mg Budesonide on March 26th and I have been sick ever since. I was just in the hospital for 3 days. Got prednisone in the hospital, no Budesonide. Was released from hospital with 40 mg of Prednisone each morning but that will soon change . Have had normal BM for 3 days . Just had Telehealth visit with my gastro. He will send a message through the patient portal on how I am to wean off my prednisone and to reinstate my Budesonide. He spoke about Stelara every 6 weeks instead of every 8 weeks. He spoke about surgery. I have stricture and inflammation in my terminal ileum and have Crohn's disease. I had a CT scan at the hospital and I'm not sure of the results. If my treatment does not work or go well after these changes, my Gastro has mentioned for me to go to the Mayo Clinic in Phoenix Arizona which is where I live. I truly feel like he's just trying to pass me off on another doctor because he does not want to deal with me, but that is not fact. As far as I know my health insurance does not cover Mayo Clinic, I will callMayo tomorrow. I have no money to pay for Mayo Clinic. I have to pay for the ambulance ride and 2 days of Hospital stay right now from my recent hospital stay. So, I will see how everything goes over the next few months. I will be weaning off the prednisone and going back to three 3mg Budesonide, stay on the methotrexate, stay on the folic acid, and go to every 6 weeks on this Stelara instead of 8 weeks if approved by Jansen. This will be my treatment as of today. I really don't know how to go to Mayo Clinic if I have no money and my insurance doesn't cover it, but I will have to wait and see how everything goes in the next few months. I have been diagnosed with crohn's for 5 years, but I have been sick since 1997. I have been an emotional mess with this Crohn's and don't know what to do about that. I am constantly worried about becoming homeless and constantly worried about this Crohn's and how it affects me physically and mentally. I send too many portal messages to my gastroenterologist office and they are very emotional and frustrating messages, so I've been told not to do that any longer by my gastro. I am alone and I have no money and I'm sad.