Hi everyone. This is my first time trying out a blog so please bear with me if I don't know the ropes perfectly just yet!
I saw a GI specialist in 2000 after months of pain and diahrrea about 10x/day. He did several tests - a partial sigmoidoscopy (?), a small bowel follow-through, barium enema, blood work, etc. At 26 years old, I was a mother of 2, and diagnosed with Crohn's in 2001. Shortly afterwards, the specialist retired. I had gallbladder surgery in 2003. I had no Crohn's complications for years, taking Salofalk everyday (1000mg 3x/day... I think). In 2007 I started to have a lot of pain and frequent loose bm's. I kept going back to my GP who would send me for an x-ray and find nothing. She kept telling me that it would take me months to see a new GI specialist so I might as well just do without as long as I could. In late 2007 I went to the ER with severe pain. They would diagnose me with some foolish thing, and send me home. After 3 trips they realized that I had a stone lodged in my bile duct and that it needed to be removed ASAP. This was how I got in with my GI specialist.
I spent the next couple of years trying various medications in varying dosages. I ended up on Imuran 100mg 2x/day and up and down dosages of Prednisone over a period of a few years. I couldn't seem to stay off the prednisone for any amount of time. Finally after a week's stay in the hospital in 2009 for an ileus, my specialist put me on Humira 40ml/2 weeks. That seemed to make no difference so after a couple of months he adjusted it to 80ml/2weeks. After a couple of months, that started working and I had nearly a year without problems (most of 2010), except for the consistent joint pain which seems to go with this.
I'm 34 now, and early this year, I started having flare ups again. The doctor adjusted the Humira dosage again to 80ml/10 days (my insurance company must hate me). That didn't help. He mentioned the possibility of surgery several times, but I think he wanted to give Remicade a try first. I was hospitalized in February for a few days and put on IV steroids. They also did bloodwork, an x-ray and CT Scan which showed mild inflammation. I felt somewhat better so when I was released I was put on oral steroids.
After a month I started feeling worse again. My specialist was out of town so my GP upped the prednisone to 50mg, then 75mg the following week when there had been no change. I ended up in the hospital early in April and put on IV steroids which made no difference. I saw a new specialist because mine was still out of town. He was very thorough and promptly ordered a colonoscopy (which I had never had before!). He did a CT Scan again to compare to February's scan. There was little difference and he was doubtful that the colonoscopy would find much. While still in hospital I had the colonoscopy. As soon as I came to afterwards, he told me that there was significant scarring in the ileum, that it was virtually blocked from the scar tissue, and that it would require surgery. The following day I had an ileo-cecal re-section. I was released from the hospital 6 days later. It's been almost 3 weeks since the surgery and I am still recouperating at home. I have to be careful not to overdo it, which gets frustrating. I still have to rest a lot but I'm getting better. I'm looking forward to some time in remission! I have an appointment to see my GI to find out what drugs to stay on to maintain remission. I must admit that although I always respected my GI, I'm disappointed that he didn't do a colonoscopy sooner. It might have saved me months of suffering.
I saw a GI specialist in 2000 after months of pain and diahrrea about 10x/day. He did several tests - a partial sigmoidoscopy (?), a small bowel follow-through, barium enema, blood work, etc. At 26 years old, I was a mother of 2, and diagnosed with Crohn's in 2001. Shortly afterwards, the specialist retired. I had gallbladder surgery in 2003. I had no Crohn's complications for years, taking Salofalk everyday (1000mg 3x/day... I think). In 2007 I started to have a lot of pain and frequent loose bm's. I kept going back to my GP who would send me for an x-ray and find nothing. She kept telling me that it would take me months to see a new GI specialist so I might as well just do without as long as I could. In late 2007 I went to the ER with severe pain. They would diagnose me with some foolish thing, and send me home. After 3 trips they realized that I had a stone lodged in my bile duct and that it needed to be removed ASAP. This was how I got in with my GI specialist.
I spent the next couple of years trying various medications in varying dosages. I ended up on Imuran 100mg 2x/day and up and down dosages of Prednisone over a period of a few years. I couldn't seem to stay off the prednisone for any amount of time. Finally after a week's stay in the hospital in 2009 for an ileus, my specialist put me on Humira 40ml/2 weeks. That seemed to make no difference so after a couple of months he adjusted it to 80ml/2weeks. After a couple of months, that started working and I had nearly a year without problems (most of 2010), except for the consistent joint pain which seems to go with this.
I'm 34 now, and early this year, I started having flare ups again. The doctor adjusted the Humira dosage again to 80ml/10 days (my insurance company must hate me). That didn't help. He mentioned the possibility of surgery several times, but I think he wanted to give Remicade a try first. I was hospitalized in February for a few days and put on IV steroids. They also did bloodwork, an x-ray and CT Scan which showed mild inflammation. I felt somewhat better so when I was released I was put on oral steroids.
After a month I started feeling worse again. My specialist was out of town so my GP upped the prednisone to 50mg, then 75mg the following week when there had been no change. I ended up in the hospital early in April and put on IV steroids which made no difference. I saw a new specialist because mine was still out of town. He was very thorough and promptly ordered a colonoscopy (which I had never had before!). He did a CT Scan again to compare to February's scan. There was little difference and he was doubtful that the colonoscopy would find much. While still in hospital I had the colonoscopy. As soon as I came to afterwards, he told me that there was significant scarring in the ileum, that it was virtually blocked from the scar tissue, and that it would require surgery. The following day I had an ileo-cecal re-section. I was released from the hospital 6 days later. It's been almost 3 weeks since the surgery and I am still recouperating at home. I have to be careful not to overdo it, which gets frustrating. I still have to rest a lot but I'm getting better. I'm looking forward to some time in remission! I have an appointment to see my GI to find out what drugs to stay on to maintain remission. I must admit that although I always respected my GI, I'm disappointed that he didn't do a colonoscopy sooner. It might have saved me months of suffering.
Last edited:
Jan
