Hey Everyone! I am new to the site, but unfortunately not new to Crohn's Disease. I was diagnosed about 8 years ago at the age of 15. I have been on most of the conventional treatments including, prednisone, remicade, humira, pentasa, 6MP, entocort, and some others.
Remicade helped for a little while, but when I wen to college my doctors decided I should go on Humira due to its convenience. After being in remission I decided to go off the Humira because I did not like being on long term medication and I seemed to be managing everything well with diet. I have a rather different manifestation of the disease, where I do not get diarrhea, but instead I become constipated and have lots of inflammation. It was suggested to me that this occurs because of where my inflammation is in my digestive tract.
I was doing fairly well up until Dec. 2011 when I had a short hospital stay due to a flare. I was in extreme pain all the time and I almost didn't make it back to college for my last semester. During that school winter break I was able to get back on my feet using prednisone and I was put back on Humira. However, everything else in my body seemed to start to go haywire. I was in pain everywhere, I was exhausted, and I could barely function. I had just enough energy to get to class, come home, and go back to bed. Eventually I saw a rheumatologist who diagnosed me with fibromyalgia and we decided that the source of my issues was Humira, so I went off of it. My Crohn's was fairly well controlled, so it wasn't a big deal.
So here we are to the present. I am flaring again and I have been for the last two months. Prednisone has stopped working and next week I am being tested for SIBO (small intestine bacterial overgrowth) and also having a colonoscopy to see how my intestines look. My doctors are cautious about putting me back on Remicade for fear of an allergic reaction, and I do not want to go back on Humira for all the trouble it caused me last time. I had read some things about elemental diets being of some help, so I am starting an elemental diet to hopefully get things under control. I really don't like medication and believe that I can control my Crohn's with something other than medication.
I am just very scared right now because I don't know how to help myself not be in pain. And I am scared for my job. I was just hired as a full time employee a few weeks ago, and now I am missing all kinds of work due to doctor's appointments and needing to stay home sick because I am in too much pain.
So that is my story, thank you all for reading and I look forward to meeting you all!
Remicade helped for a little while, but when I wen to college my doctors decided I should go on Humira due to its convenience. After being in remission I decided to go off the Humira because I did not like being on long term medication and I seemed to be managing everything well with diet. I have a rather different manifestation of the disease, where I do not get diarrhea, but instead I become constipated and have lots of inflammation. It was suggested to me that this occurs because of where my inflammation is in my digestive tract.
I was doing fairly well up until Dec. 2011 when I had a short hospital stay due to a flare. I was in extreme pain all the time and I almost didn't make it back to college for my last semester. During that school winter break I was able to get back on my feet using prednisone and I was put back on Humira. However, everything else in my body seemed to start to go haywire. I was in pain everywhere, I was exhausted, and I could barely function. I had just enough energy to get to class, come home, and go back to bed. Eventually I saw a rheumatologist who diagnosed me with fibromyalgia and we decided that the source of my issues was Humira, so I went off of it. My Crohn's was fairly well controlled, so it wasn't a big deal.
So here we are to the present. I am flaring again and I have been for the last two months. Prednisone has stopped working and next week I am being tested for SIBO (small intestine bacterial overgrowth) and also having a colonoscopy to see how my intestines look. My doctors are cautious about putting me back on Remicade for fear of an allergic reaction, and I do not want to go back on Humira for all the trouble it caused me last time. I had read some things about elemental diets being of some help, so I am starting an elemental diet to hopefully get things under control. I really don't like medication and believe that I can control my Crohn's with something other than medication.
I am just very scared right now because I don't know how to help myself not be in pain. And I am scared for my job. I was just hired as a full time employee a few weeks ago, and now I am missing all kinds of work due to doctor's appointments and needing to stay home sick because I am in too much pain.
So that is my story, thank you all for reading and I look forward to meeting you all!