Hi guys,
I'm new here. I was diagnosed with crohn's in January 2003, when I was 13. Back then I weighed only 58 pounds. I was instantly put on a high dose of prednisone to alleviate the inflammation (which was at this time located primarily in m. Over the next few years, i tried 5ASA, 6MP, and methotrexate...but they all failed or worked only initially. I was constantly on and off budesonide and prednisone. As such, my bone density is very low, almost osteporisis level.
Finally in 2006, I started remicade...the first drug that worked for me. Other than some complications with scarring (which I solved with diet adjustments), I was finally feeling well. I moved from 100 pounds to 130 pounds gradually. I was in remission for two years. However, slowly I stopped responding and needed to increase frequency and dosage. Also now I had mild infammation in my colon and rectum.
In summer 2009, I got really sick (the remicade at double dose and double frequency only worked slightly and for a bit now) I decided to go off it so I could be eligible for this new clinical trial avaliable - vedolizmulab. I needed to be off remicade for 90 days. However, as you'll see below I got too sick before I could complete those 90 days.
My weight had gone down to less than 100 pounds (reached a low of 89 during that summer, remember at that time I was 20 years old and 5-10). I had a lot of abdominal pain (sharp and intense), 8-10 bowel movements a day, constant fevers, nausea, vomitting etc, etc. My inflammation was so bad that even ivy steriods wouldnt calm my small intestine. However, i think they helped with my mild inflammation in the colon I also developed a rectal abscess, which I needed an emergency surgery for. A week after my emergency surgery, I was admitted in the hospital for 3 weeks. My abscess had come back again. So i needed a surgery for that again. I also had severe scarring and inflammation in my small intestine. So i had a surgery to remove 35 centimetres of my small bowel + appendix + valve.
After being discharged, I was hoping I could start anew. However, my fistula from my surgery was not healing properly. So i had to have it packed everyday by nurses. My inflammation in my colon also returned a month later. Later that fall (november 2009), my fistula turned into an abscess, which I needed an emergency surgery for. Three weeks later, the abscess came back and I needed another one. Same thing, two weeks later...on new years eve I was admitted to the hospital and had a surgery, except this time surgeon decided to lay the fistula open, resultin in a huge surgical wound.
I continued my daily nurse visits to have this wound packed. Now that my infection (abscess) was finally under control, my doctor was able to put me on humira (early 2010). It worked intially, and after playing with the doses and frequency for one year and a bit, my doctor and I accepted it wasnt working. I also continued my daily nurse visits for wound (continue to date, but now only twice a week).
In January 2011, my colon had become so inflammed that I was running to the washroom 30+ times a day, and ten times a night. I was put on prednisone, which put me down to prolly 15-20 times a day. My GI discussed 3 options with me: permanent removal of colon and rectum, stem cell transplant, or a potential clinical trial. Luckily, the clinical trial was opening sooner, rather than later...a phase 3 vedolizmulab. In April 2011, I started the trial, the first ten weeks were blind; and then I was switched to the open label study, which I have been on for about 4-5 weeks. So far I've had no change in symptoms. still going to washroom 20-25 times a day, and also wakin up a lot at night. im on a maintenance dose of 15mg of pred (required until I show improvement). My doctor said that it could take up to 6 or 7 infusions (or more, they don't have a cutoff period anymore because theoretically it should work for everyone at some point) to start working, so I'm keepin my fingers crossed.
I'm new here. I was diagnosed with crohn's in January 2003, when I was 13. Back then I weighed only 58 pounds. I was instantly put on a high dose of prednisone to alleviate the inflammation (which was at this time located primarily in m. Over the next few years, i tried 5ASA, 6MP, and methotrexate...but they all failed or worked only initially. I was constantly on and off budesonide and prednisone. As such, my bone density is very low, almost osteporisis level.
Finally in 2006, I started remicade...the first drug that worked for me. Other than some complications with scarring (which I solved with diet adjustments), I was finally feeling well. I moved from 100 pounds to 130 pounds gradually. I was in remission for two years. However, slowly I stopped responding and needed to increase frequency and dosage. Also now I had mild infammation in my colon and rectum.
In summer 2009, I got really sick (the remicade at double dose and double frequency only worked slightly and for a bit now) I decided to go off it so I could be eligible for this new clinical trial avaliable - vedolizmulab. I needed to be off remicade for 90 days. However, as you'll see below I got too sick before I could complete those 90 days.
My weight had gone down to less than 100 pounds (reached a low of 89 during that summer, remember at that time I was 20 years old and 5-10). I had a lot of abdominal pain (sharp and intense), 8-10 bowel movements a day, constant fevers, nausea, vomitting etc, etc. My inflammation was so bad that even ivy steriods wouldnt calm my small intestine. However, i think they helped with my mild inflammation in the colon I also developed a rectal abscess, which I needed an emergency surgery for. A week after my emergency surgery, I was admitted in the hospital for 3 weeks. My abscess had come back again. So i needed a surgery for that again. I also had severe scarring and inflammation in my small intestine. So i had a surgery to remove 35 centimetres of my small bowel + appendix + valve.
After being discharged, I was hoping I could start anew. However, my fistula from my surgery was not healing properly. So i had to have it packed everyday by nurses. My inflammation in my colon also returned a month later. Later that fall (november 2009), my fistula turned into an abscess, which I needed an emergency surgery for. Three weeks later, the abscess came back and I needed another one. Same thing, two weeks later...on new years eve I was admitted to the hospital and had a surgery, except this time surgeon decided to lay the fistula open, resultin in a huge surgical wound.
I continued my daily nurse visits to have this wound packed. Now that my infection (abscess) was finally under control, my doctor was able to put me on humira (early 2010). It worked intially, and after playing with the doses and frequency for one year and a bit, my doctor and I accepted it wasnt working. I also continued my daily nurse visits for wound (continue to date, but now only twice a week).
In January 2011, my colon had become so inflammed that I was running to the washroom 30+ times a day, and ten times a night. I was put on prednisone, which put me down to prolly 15-20 times a day. My GI discussed 3 options with me: permanent removal of colon and rectum, stem cell transplant, or a potential clinical trial. Luckily, the clinical trial was opening sooner, rather than later...a phase 3 vedolizmulab. In April 2011, I started the trial, the first ten weeks were blind; and then I was switched to the open label study, which I have been on for about 4-5 weeks. So far I've had no change in symptoms. still going to washroom 20-25 times a day, and also wakin up a lot at night. im on a maintenance dose of 15mg of pred (required until I show improvement). My doctor said that it could take up to 6 or 7 infusions (or more, they don't have a cutoff period anymore because theoretically it should work for everyone at some point) to start working, so I'm keepin my fingers crossed.
