- Joined
- May 6, 2012
- Messages
- 62
Good day all.
I will start this with, I'm new to the forum BUT not to crohn's, I have been suffering ( and I say suffering ) because well I'm one of those people that nothing seems to work. I was diagnosed back in 1990 but had been dealing with all the signs for 4 years prior to that, when finally diagnosed I was put on prednisone (for 3 years) yes that's what I said! And at a very high dose 65 ml per day, I now have thinning in my hips and skin. So to make a long story short I have now had 5 resection's, an illeostomy due to 10 rectal fistulas, back in 2006 I became pregnant and gave birth to a little girl at 32 weeks, I was on prednisone after the first trimester, she came out a very sick little girl and was diagnosed with quad spastic cerebral palsy at birth due to a severe brain bleed. When I read how other people have a hard time getting out of bed, I SO understand!. My little girl is the biggest reason I get out of bed every day, and some days the last thing I want is to get up.
I have been on every med known to a person with crohn's from prednisone to cipro,sulfasalzine,infliximab,intravenous (iv) steroids,flagyl,asacol,entocort that I'm on now.TNF blockers remicade, I was also in a controlled group for 3 other TNF blocker studies... Every part of my body is affected from my joints, eyes,skin I don't know if anyone else gets these red swollen bumps around the bottom of your legs and ankles they hurt like hell! The next drug they want me to start is humira, but I have a very high family history of cancer and have to say I don't feel that great about it, I also have to think of my daughter too.
I'm sorry for going on and on but a lot has happened over the past 20 some odd years. I have to say it really blows me away to hear how many people are diagnosed everyday now, back when I was diagnosed you never really heard a lot about it, and they had little hope then. Now they have so many more meds, talk groups like this one, at one time you didn't talk about it, now if you ask the average person they know of or are related to someone with crohn's, and I have to say that really upsets me greatly.
I hope by telling some of my story I have helped someone, even if it is only to know you are not alone, some days are really bad, but some well are better and you have to run with the good ones. Try not to let crohn's run you, run crohn's.
Depression also is very much a part of crohn's, please don't ever think you are the only one with it, it happens to all of us, I know it happens to me! Some days I ask myself what did I do in life that warrants this?? And at the end you have to remember you didn't cause this........it's just the luck of the draw.
To all of you that are not yet diagnosed, those just diagnosed and for all of those that have been diagnosed for a short time or long time, we must stand together and fight this thing every step of the way, and please remember you are not alone.
Thank you for letting me goin on and on. All the best to everyone:ybiggrin:
I will start this with, I'm new to the forum BUT not to crohn's, I have been suffering ( and I say suffering ) because well I'm one of those people that nothing seems to work. I was diagnosed back in 1990 but had been dealing with all the signs for 4 years prior to that, when finally diagnosed I was put on prednisone (for 3 years) yes that's what I said! And at a very high dose 65 ml per day, I now have thinning in my hips and skin. So to make a long story short I have now had 5 resection's, an illeostomy due to 10 rectal fistulas, back in 2006 I became pregnant and gave birth to a little girl at 32 weeks, I was on prednisone after the first trimester, she came out a very sick little girl and was diagnosed with quad spastic cerebral palsy at birth due to a severe brain bleed. When I read how other people have a hard time getting out of bed, I SO understand!. My little girl is the biggest reason I get out of bed every day, and some days the last thing I want is to get up.
I have been on every med known to a person with crohn's from prednisone to cipro,sulfasalzine,infliximab,intravenous (iv) steroids,flagyl,asacol,entocort that I'm on now.TNF blockers remicade, I was also in a controlled group for 3 other TNF blocker studies... Every part of my body is affected from my joints, eyes,skin I don't know if anyone else gets these red swollen bumps around the bottom of your legs and ankles they hurt like hell! The next drug they want me to start is humira, but I have a very high family history of cancer and have to say I don't feel that great about it, I also have to think of my daughter too.
I'm sorry for going on and on but a lot has happened over the past 20 some odd years. I have to say it really blows me away to hear how many people are diagnosed everyday now, back when I was diagnosed you never really heard a lot about it, and they had little hope then. Now they have so many more meds, talk groups like this one, at one time you didn't talk about it, now if you ask the average person they know of or are related to someone with crohn's, and I have to say that really upsets me greatly.
I hope by telling some of my story I have helped someone, even if it is only to know you are not alone, some days are really bad, but some well are better and you have to run with the good ones. Try not to let crohn's run you, run crohn's.
Depression also is very much a part of crohn's, please don't ever think you are the only one with it, it happens to all of us, I know it happens to me! Some days I ask myself what did I do in life that warrants this?? And at the end you have to remember you didn't cause this........it's just the luck of the draw.
To all of you that are not yet diagnosed, those just diagnosed and for all of those that have been diagnosed for a short time or long time, we must stand together and fight this thing every step of the way, and please remember you are not alone.
Thank you for letting me goin on and on. All the best to everyone:ybiggrin:
I'm so sorry to hear that you're suffering so much 
