Greetings remicade club members,
I have been lurking around this forum for over a year and reading about your various experiences. I felt a need to reach out for moral support and that is why I finally joined up and am going to tell you all about me and my disease and how my options seem to have narrowed to only one: Remicade infusion.
I seek some words to allay my fears and comfort me in the unkown and unknowable. I have read enough of your many stories to know that the way that remicade may or may not work for me will only be discovered by trying it out.
I have cutaneous crohn's of the perianal variety. I am 53. I first went to a doctor for my problem in 1997. It was misdiagnosed as an anal fissure and surgery was performed. Naturally, there was no cure and the disease continued. In 2003 prior to back surgery, during pre-operative screening, my mother's chrohn's history led to a colonoscopy for me, with the specific order to "eliminate a diagnosis of crohn's". No crohn's was found in my system and surgery was performed again to treat another misdiagnosis of anal fissure/chronic fistula.
In 2006 I was referred to a gastro-intestinal guy who diagnosed "multiple chronic fistula" and hydradnitis. He proposed a series of surgeries with possible temorary colostomy. I was scared to death by the prospect, and did not make a desision.
In 2009 I developed lesions on my penis and was referred to a dermatologist. On first examination I was treated for VD despite my objections that I had been faithful to my wife since age 21. We discussed my mother's history of chrohn's disease. On the second visit the dermatologist biopsied a lesion and the lab confirmed the presence of Crohn's. I was treated with prednisone for a few months, then metronidozol, which seemed to keep the problem at bay.
Over the last year the infection in my penis erupted twice into a serious swelling and filled with fuid that erupted frighteningly. The last time that happened I called the hospital for an emergency appointment and was told to see my PCP first. I got to see her that very day. She took a culture and prescribed an antibiotic. Three days later the problem was much better on a follow up appt. I confided that I was afraid that I might lose my member and I was terrified. She said don't worry wer'e not going to cut it off. I felt much better.
I requested a referral to another specialist and got another gastro man. He consulted with a colleague and they both diagnosed Hydradnitis and said I should try Remicade. I was cleared for Remicade treatment but I was scared of it and hesitated.
In late 2010 I was referred to another dermatologist at the same hospital and he was leaning towards Cutaneous Crohn's. During our first visit I told him about the last frightening infection and he told me that if the right antibiotic was not found quickly I might indeed be facing amputation! He put me on Cyproflaxin and it was not working very well so I went back on Metronidozol.
In January of 2011 I was given an appointment for "Grand Rounds". Lying on an exam table, a photographer came and took a picture of my malady. Then a proccession of specialists trooped through the room by ones, twos and threes. There were at least a dozen people who took a peek and left. They all then conferred together by way of diagnosis. I was let go with the promise of a call from the dermatologist later in the day.
He called to tell me the consensus opinion was a diagnosis of cutaneous crohn's and all of the experts recomended Remicade treatment.
I am once again cleared for Remicade infusion and have an appointment for Friday the 15th.
I am apprehensive as hell...
I have been lurking around this forum for over a year and reading about your various experiences. I felt a need to reach out for moral support and that is why I finally joined up and am going to tell you all about me and my disease and how my options seem to have narrowed to only one: Remicade infusion.
I seek some words to allay my fears and comfort me in the unkown and unknowable. I have read enough of your many stories to know that the way that remicade may or may not work for me will only be discovered by trying it out.
I have cutaneous crohn's of the perianal variety. I am 53. I first went to a doctor for my problem in 1997. It was misdiagnosed as an anal fissure and surgery was performed. Naturally, there was no cure and the disease continued. In 2003 prior to back surgery, during pre-operative screening, my mother's chrohn's history led to a colonoscopy for me, with the specific order to "eliminate a diagnosis of crohn's". No crohn's was found in my system and surgery was performed again to treat another misdiagnosis of anal fissure/chronic fistula.
In 2006 I was referred to a gastro-intestinal guy who diagnosed "multiple chronic fistula" and hydradnitis. He proposed a series of surgeries with possible temorary colostomy. I was scared to death by the prospect, and did not make a desision.
In 2009 I developed lesions on my penis and was referred to a dermatologist. On first examination I was treated for VD despite my objections that I had been faithful to my wife since age 21. We discussed my mother's history of chrohn's disease. On the second visit the dermatologist biopsied a lesion and the lab confirmed the presence of Crohn's. I was treated with prednisone for a few months, then metronidozol, which seemed to keep the problem at bay.
Over the last year the infection in my penis erupted twice into a serious swelling and filled with fuid that erupted frighteningly. The last time that happened I called the hospital for an emergency appointment and was told to see my PCP first. I got to see her that very day. She took a culture and prescribed an antibiotic. Three days later the problem was much better on a follow up appt. I confided that I was afraid that I might lose my member and I was terrified. She said don't worry wer'e not going to cut it off. I felt much better.
I requested a referral to another specialist and got another gastro man. He consulted with a colleague and they both diagnosed Hydradnitis and said I should try Remicade. I was cleared for Remicade treatment but I was scared of it and hesitated.
In late 2010 I was referred to another dermatologist at the same hospital and he was leaning towards Cutaneous Crohn's. During our first visit I told him about the last frightening infection and he told me that if the right antibiotic was not found quickly I might indeed be facing amputation! He put me on Cyproflaxin and it was not working very well so I went back on Metronidozol.
In January of 2011 I was given an appointment for "Grand Rounds". Lying on an exam table, a photographer came and took a picture of my malady. Then a proccession of specialists trooped through the room by ones, twos and threes. There were at least a dozen people who took a peek and left. They all then conferred together by way of diagnosis. I was let go with the promise of a call from the dermatologist later in the day.
He called to tell me the consensus opinion was a diagnosis of cutaneous crohn's and all of the experts recomended Remicade treatment.
I am once again cleared for Remicade infusion and have an appointment for Friday the 15th.
I am apprehensive as hell...
