Hi I am new to the site and am a little nervous. I guess it has just been a long journey and I have been through so much. I was officially diagnosed in March of 2011 but I have been suffering with this for well over 7 years. I was in and out of the hospital, went through scans and scopes and saw specialist and the whole nine yards. Many of the doctors said it was all in my head or that I was a drug addict seeking drugs or my personal favorite was that I had Munchausens disease. Which infuriated me and made me laugh at the same time because my symptoms were severe abdominal pain explosive diarrhea and lots of vomiting not exactly the symptoms that make people want to be around you giving you attention. Anyway I was rushed to a local ER after collapsing with severe rectal bleeding which was a blessing because I met this GI specialist who did an emergency colonoscopy and found severe ulcerations and inflamation. He came out to my parents and immediately said your daughter has been misdiagnosed and misstreated she has Crohn's disease which is what we thought all along
I am 34 now and still as afraid and lonely as I felt during all the accusations and misdiagnosis. My last sigmoid showed that the ulcers and inflammation had spread meaning the pills were not working so we are going with remicade infusions and I'm hoping it works. I am so sick all the time I have to inject phenergan into my hips daily and I lost count of the number of pills I take and now I have to get a port placed since my veins are shot.
I have been in a bad flare since October with massive amounts of bleeding and constant nausea and vomiting and horrible pain. I spend hours on the toilet and the rest of the time all I can do is sleep. I feel so defeated and weak and alone. Don't get me wrong I have a wonderful husband and the best parents anyone could ask for but I have no friends left they all got tired of my limitations and they have all pretty much abandoned me.
So now I am so sick and have to have a port put in so they can run the remicade and I am so afraid. I'm not sure what I am so afraid of maybe it is that the remicade won't work or that I will be this sick for the rest of my life
So that's my story I probably over shared just feel like I am alone in this as far as understanding the diet restrictions I have and the physical limitations I just feel like no one else understands. So that's my feelings and my story
I am 34 now and still as afraid and lonely as I felt during all the accusations and misdiagnosis. My last sigmoid showed that the ulcers and inflammation had spread meaning the pills were not working so we are going with remicade infusions and I'm hoping it works. I am so sick all the time I have to inject phenergan into my hips daily and I lost count of the number of pills I take and now I have to get a port placed since my veins are shot.
I have been in a bad flare since October with massive amounts of bleeding and constant nausea and vomiting and horrible pain. I spend hours on the toilet and the rest of the time all I can do is sleep. I feel so defeated and weak and alone. Don't get me wrong I have a wonderful husband and the best parents anyone could ask for but I have no friends left they all got tired of my limitations and they have all pretty much abandoned me.
So now I am so sick and have to have a port put in so they can run the remicade and I am so afraid. I'm not sure what I am so afraid of maybe it is that the remicade won't work or that I will be this sick for the rest of my life
So that's my story I probably over shared just feel like I am alone in this as far as understanding the diet restrictions I have and the physical limitations I just feel like no one else understands. So that's my feelings and my story
