Hello out there.
Let me just give a quick picture of where we find ourselves here. I am not a very effusive person and the thought of writing about my private life in a forum goes against my natural personality. Then again how many personalities have been changed when diagnosed with an incurable disease? I’m guessing a lot.
I have had "stomach issues" for years. I would complain in my early 20's but as formerly healthy (slightly rebellious young man) I still knew I was invincible and as such would order another slice of pizza and smoke a cigarette all the while hiding my discomfort in silence.
Finally after a few ER trips for severe abdominal pain, cramping, nausea and of course everyones favorite diarrhea. I gave in and saw a GI doctor proceeded by the standard array of humiliating and intrusive tests. I received what every desperate patient needs to hear...the beautifully refined diagnosis that I'm sure all of us have been given before IBS. IBS (the eloquent diagnosis of exclusion a.k.a. we have no idea what's wrong with you) basically informed me that there were millions like me and since they can deal with it so should you. Sorry buddy, you got a sensitive stomach. Thus, my suffering continued and I went on making jokes to stabilize my denial that there was really something terribly wrong with my body. It helped that I am naturally stubborn and had a high pain tolerance.
Making it through law school undiagnosed was a gritty and then upon graduation I gave in once more and returned to medical profession which I was still felt spurned by all those years ago. However, now armed with my degree and medical malpractice classes and knowledge, I knew this ammo was going to get results. That was in 2005.
In 2012 I was finally diagnosed with Crohn's Ileitis to great fan fare. By this time I had endured, countless trips to the ER pumped up with pain medications and curious looks about why I needed such strong pain medication if it was only IBS. I went from swallowing cameras to having hoses shoved into every orifice. The journey to finally getting diagnosed was a dubious achievement. After all the years of telling people something was wrong I finally got my validation only to find myself staring into the abyss that is IBD.
As the years pass me by (time distorts when you are sick and clouds your perceptions) I am introduced to a a bouquet of medications that sound like they should be used in a sic fi movie as forms of torture. Steroids that reduce swelling only to make you feel crazier than you felt while ill. TNF-A blockers that leave you vulnerable to secondary infections (C-diff in my case) which as my luck would have it substituted my long overdue vacation for a grand get away in the beautifully decorated and fluorescently bathed hospital for half of the summer.
The empowering medical advice was I could make behavioral changes that could help in my battle with Crohn's. I aquested, no more smoking, strict BRAT diet that is when I can eat. I've lost 30lbs since my diagnosis and though women don't seem to mind that particular side effect, I'm not a fan. I am seeing a therapist and working on meditation. So far I was hoping for more of an impact but it didn't seem to make a difference. So far at least.
There is talk of surgery and the statistics on the reoccurrence of the disease is laughable. My existing with Crohn’s Disease feels like I have to be the only person living like this but reading your stories makes me feel like I am part of a real forum.
I hope I can help anyone who needs it. (No legal advice given, just friendly).
Good luck to us all and thank you for letting me share my story.
Let me just give a quick picture of where we find ourselves here. I am not a very effusive person and the thought of writing about my private life in a forum goes against my natural personality. Then again how many personalities have been changed when diagnosed with an incurable disease? I’m guessing a lot.
I have had "stomach issues" for years. I would complain in my early 20's but as formerly healthy (slightly rebellious young man) I still knew I was invincible and as such would order another slice of pizza and smoke a cigarette all the while hiding my discomfort in silence.
Finally after a few ER trips for severe abdominal pain, cramping, nausea and of course everyones favorite diarrhea. I gave in and saw a GI doctor proceeded by the standard array of humiliating and intrusive tests. I received what every desperate patient needs to hear...the beautifully refined diagnosis that I'm sure all of us have been given before IBS. IBS (the eloquent diagnosis of exclusion a.k.a. we have no idea what's wrong with you) basically informed me that there were millions like me and since they can deal with it so should you. Sorry buddy, you got a sensitive stomach. Thus, my suffering continued and I went on making jokes to stabilize my denial that there was really something terribly wrong with my body. It helped that I am naturally stubborn and had a high pain tolerance.
Making it through law school undiagnosed was a gritty and then upon graduation I gave in once more and returned to medical profession which I was still felt spurned by all those years ago. However, now armed with my degree and medical malpractice classes and knowledge, I knew this ammo was going to get results. That was in 2005.
In 2012 I was finally diagnosed with Crohn's Ileitis to great fan fare. By this time I had endured, countless trips to the ER pumped up with pain medications and curious looks about why I needed such strong pain medication if it was only IBS. I went from swallowing cameras to having hoses shoved into every orifice. The journey to finally getting diagnosed was a dubious achievement. After all the years of telling people something was wrong I finally got my validation only to find myself staring into the abyss that is IBD.
As the years pass me by (time distorts when you are sick and clouds your perceptions) I am introduced to a a bouquet of medications that sound like they should be used in a sic fi movie as forms of torture. Steroids that reduce swelling only to make you feel crazier than you felt while ill. TNF-A blockers that leave you vulnerable to secondary infections (C-diff in my case) which as my luck would have it substituted my long overdue vacation for a grand get away in the beautifully decorated and fluorescently bathed hospital for half of the summer.
The empowering medical advice was I could make behavioral changes that could help in my battle with Crohn's. I aquested, no more smoking, strict BRAT diet that is when I can eat. I've lost 30lbs since my diagnosis and though women don't seem to mind that particular side effect, I'm not a fan. I am seeing a therapist and working on meditation. So far I was hoping for more of an impact but it didn't seem to make a difference. So far at least.
There is talk of surgery and the statistics on the reoccurrence of the disease is laughable. My existing with Crohn’s Disease feels like I have to be the only person living like this but reading your stories makes me feel like I am part of a real forum.
I hope I can help anyone who needs it. (No legal advice given, just friendly).
Good luck to us all and thank you for letting me share my story.
