Greetings to all who inhabit this wonderful forum! I will try and keep this introduction short, but I usually fail :ybatty:. I am one of the healthiest sick people I know! I work really hard it. I'm generally an upbeat and happy person. I'm a single mom of two amazing children. I love to run and swim and be as active as I can. I was diagnosed with Crohn's in 1995 after a year of illness which began after the birth of my daughter (Jackie, now 18). I had never been sick a day in my life before that! After about 3 years I was in remission and we tried for another child. Sadly I had a miscarriage. It was devastating and caused considerable stress. I was able to conceive shortly after and consider it an amazing blessing. Unfortunately, I flared terribly while pregnant and ended up on a lot of bed rest the last couple months. My son was born 6 weeks early, amped up on prednisone, but overall pretty healthy. Following his birth my health declined steadily for about 2 years. I was hospitalized lots with abscesses, fistulas and obstructions. A couple days after his second birthday my bowel perforated. A year, two resections (a section of duodenum and the more usual terminal ileum, ileocecal valve and cecum) and a fistula (surgery site to ovary and rectum) surgery later I started Remicade. It gave me my life back and I've been on it since...I know, more than 10 years. I don't know many people who have had success with it for that long. I've had only minor flares since then. About a year ago, however, I started having quite a lot of joint pain which I attributed to all my running...it is a stress reliever for me and I've had a lot of stress. During 2012 I ran my first marathon and completed 3 halfs. The pain always seemed to get worse the last couple weeks before an infusion and then improve with the infusion. 6 months or so ago my hands got involved, by 2 months ago, they hurt so badly I couldn't button my pants or hold the steering wheel to drive without a lot of pain, and I felt like I lost all the strength in my hands. I finally told my GI (I know, bad, should've got on it sooner.) He immediately referred me to a rheumatologist who got me in asap and diagnosed arthritis everywhere. Lower back beginning to fuse, feet, ankles, knees, hips, shoulders, neck, wrists and hands...my hands are the worst. I've been doing methotrexate injections since and I guess its starting to help...but boy did I struggle with the mtx the first couple injections. It's been a tough couple months. The fatigue has been horrible.
Sorry, this was supposed to be short. My son Dylan will be 14 next months. He's always had GI issues and unfortunately has also managed to get every odd virus, etc. that goes around. He was diagnosed in 2010 with Crohn's. I will dedicate a post to him in the parent forum. He has been through prednisone, imuran, Entocort, 6 plus months of enteral nutrition followed by a weaning period and prevacid. He had good luck for about 7 months on Remicade but then had symptoms again. He did a small run of Prednisone, 40mg for two weeks, that really turned him around and got his gut back on track...but he has ALWAYS had bad side effects - huge moon face, sweating profusely, anxiety, lots of leg cramping, inability to sleep and even some ulceration in his esophagus. Doc's plan was to wean him off the prednisone and add mtx injection along with the Remicade. Once he got down to 20mg of pred (last week) we were to add methotrexate injection. You can imagine how hard this was given I had started it 5 weeks earlier with fairly significant issues. Anyway, he has indeed struggled. It's very frustrating and is the reason I finally posted. We see the doc in the morning...but I"m wondering if anyone else experienced very sore feet after mtx? His feet aren't really swollen, maybe his right a little bit around his ankle bone...but they hurt him terribly. He's limping something awful. And he is SO frustrated that all his current problems really are MEDS! AGH!
So my last bit of introduction is that my brother who is one year older than I (I'm 41) was diagnosed in 2008 with Crohn's after having been sick for a very, very long time. He spent nearly a year in the hospital after nearly dying alone in the street...sad story. But good news is that he didn't die and despite many years of having the disease run rampant before he got help, he is doing considerably better. He has come back to the family and is a million times happier. We are so blessed to have him. When he was so sick I could not stand being unable to do anything. I heard about CCFA's Team Challenge and signed up for the NAPA08 event. It was an amazing experience and connected me with an unbelievable support group that has literally carried me through the last several years struggle with Dylan's disease. It helped me find running, which I'm not GOOD at, but LOVE. I"ve done 6 events since then and raised over $20,000 and try to raise awareness every chance I get. It is a passion. I'm glad to now be a part of this forum as well. From viewing it over the last few weeks it seems to be a great mix of people. Overall I strive every day to not let Crohn's run my life or my son's. Through my time with the disease I have become infinitely stronger and more patient and more full of gratitude for every good day, every day my son feels well...I'm more balanced. It has had its blessings amongst the challenges. Thanks again and can't wait to meet all of you! Jodie
Sorry, this was supposed to be short. My son Dylan will be 14 next months. He's always had GI issues and unfortunately has also managed to get every odd virus, etc. that goes around. He was diagnosed in 2010 with Crohn's. I will dedicate a post to him in the parent forum. He has been through prednisone, imuran, Entocort, 6 plus months of enteral nutrition followed by a weaning period and prevacid. He had good luck for about 7 months on Remicade but then had symptoms again. He did a small run of Prednisone, 40mg for two weeks, that really turned him around and got his gut back on track...but he has ALWAYS had bad side effects - huge moon face, sweating profusely, anxiety, lots of leg cramping, inability to sleep and even some ulceration in his esophagus. Doc's plan was to wean him off the prednisone and add mtx injection along with the Remicade. Once he got down to 20mg of pred (last week) we were to add methotrexate injection. You can imagine how hard this was given I had started it 5 weeks earlier with fairly significant issues. Anyway, he has indeed struggled. It's very frustrating and is the reason I finally posted. We see the doc in the morning...but I"m wondering if anyone else experienced very sore feet after mtx? His feet aren't really swollen, maybe his right a little bit around his ankle bone...but they hurt him terribly. He's limping something awful. And he is SO frustrated that all his current problems really are MEDS! AGH!
So my last bit of introduction is that my brother who is one year older than I (I'm 41) was diagnosed in 2008 with Crohn's after having been sick for a very, very long time. He spent nearly a year in the hospital after nearly dying alone in the street...sad story. But good news is that he didn't die and despite many years of having the disease run rampant before he got help, he is doing considerably better. He has come back to the family and is a million times happier. We are so blessed to have him. When he was so sick I could not stand being unable to do anything. I heard about CCFA's Team Challenge and signed up for the NAPA08 event. It was an amazing experience and connected me with an unbelievable support group that has literally carried me through the last several years struggle with Dylan's disease. It helped me find running, which I'm not GOOD at, but LOVE. I"ve done 6 events since then and raised over $20,000 and try to raise awareness every chance I get. It is a passion. I'm glad to now be a part of this forum as well. From viewing it over the last few weeks it seems to be a great mix of people. Overall I strive every day to not let Crohn's run my life or my son's. Through my time with the disease I have become infinitely stronger and more patient and more full of gratitude for every good day, every day my son feels well...I'm more balanced. It has had its blessings amongst the challenges. Thanks again and can't wait to meet all of you! Jodie