Regular Joe
Senior Member
- Joined
- Sep 2, 2009
- Messages
- 303
I had the second colonoscopy today, by my new-not-so-new-anymore GI - been with him since January. The symptom onset was in June last year, and the first GI and his CNP seemed to to think that my GERD and uper GI issues were to blame. From June until January, I wasted a lot of time, missed a lot of work, and kept on getting sicker.
-The primary care doctor said it looks like IBD, go see a GI. I asked my girlfriend's GI if he was taking on new patients. He said yes.
-The new GI said I don't know yet, some things don't make sense. Let's "re-assess".
-The Ortho surgeon said I won't replace the knee until your flare is stabilized. It looks like IBD - go see your GI and/or a Rheumatologist
-The GI said OK go see the Rheumatologist, that's a great idea.
-The Rheumatologist said 9 out of 10 odds you have IBD. You don't have RA which is my ballgame. Can't help you. Go see your GI
As I was recovering from today's procedure, with my girlfriend beside me, the GI walks up and says bluntly "You have Crohn's Disease. Here's a prescription. Whatever Crohn's Disease symptoms you have, this should make go away. Whatever is left probably isn't from Crohn's Disease. See me in 3 months to let me know how this works."
My girlfriend literally snatched the colonoscopy report and prescription out of his hands, and read out loud "Entocort. That's what they started me on."
My girlfriend was surprised, but not so surprised. This GI is her GI, and she knows his reputation as being among the best in the US regarding his research into Crohn's Disease and treatment. After that initial moment of sheer silence, she just said "Two peas in a pod!" Does anyone know about that "moment of silence" when you get the diagnosis?
Well I guess that's that? I think I might hold a new record. It's taken less than a year from my onset (only eleven months) to get a diagnosis. Six of those eleven months were wasted with the wrong doctor. I KNOW that's not too long compared to many CD sufferers before me - like many of you in this forum. It took over 2 years for my girlfriend. It took longer for her sister.
I tell you what, though. I knew it was Crohn's Disease. It was in the fall of last year when I was pooping up a storm, I was off work, and I got so fatigued. I was on my bed crying, and I don't know if I asked myself out loud, or if it was just a thought, but I wondered "What's wrong with me?"
Some kind of "inner voice" responded with "You've got Crohn's Disease". Since then, there was never any doubt in my mind. I don't know how or why why that "inner dialogue" happened, but it sure enough was accurate.
Well let's see how Entocort works on this "Crohn's Ileitis".
I guess I'm one of "you all" now...a lifetime member of your club. Well, I guess it's "our club". I'm joking. This is a serious disease with no known cure. I believe it's 60-80% of us will eventually need some kind of related surgery. Of that group 50% will need additional surgery. There are many here online who haven't yet been diagnosed, and are probably walking around as sick as hell with a "black box" diagnosis of "Irritable Bowel Syndrome" (IBS).
IBS is not small potatoes, either. Lord help anyone who has a chronic bowel problem whether it's IBD or IBS - you're in for a rough ride. I think that it's sometimes an "easy way out" for the medical profession that don't have the time or passion to dig deeper for a thorough diagnosis. There is so much that the medical world doesn't understand about Crohn's Disease, much less the "world at large" who no little about it.
What a relief it is to find people who understand our "peculiar" disease. Heck, when you and I walk into a room with people who knew us earlier ("BC" - before Crohn's), most of the time we'll look decent, our faces will have color, and we've lost some 20-80 pounds. Everyone thinks we look great, and they assume we must feel great. I see your picture avatars, and each of you puts your best foot forward. Most of us do.
But when we're "flaring", NONE of us will be in the room with other people, or want to have our pictures taken because we feel so bad, and we feel badly about ourselves. I guess sometimes I just don't want to burst the bubble to let others know how and why I got to looking so much "better" which really only means "thinner".
Thank you all so much for participating in this web forum. By visiting here, I know I spared myself from several drawn-out years of pain and suffering from Crohn's Disease. I'm also thankful for the hard lessons some of you endured before your diagnosis, that made my experience with this disease much softer and easier.
-The primary care doctor said it looks like IBD, go see a GI. I asked my girlfriend's GI if he was taking on new patients. He said yes.
-The new GI said I don't know yet, some things don't make sense. Let's "re-assess".
-The Ortho surgeon said I won't replace the knee until your flare is stabilized. It looks like IBD - go see your GI and/or a Rheumatologist
-The GI said OK go see the Rheumatologist, that's a great idea.
-The Rheumatologist said 9 out of 10 odds you have IBD. You don't have RA which is my ballgame. Can't help you. Go see your GI
As I was recovering from today's procedure, with my girlfriend beside me, the GI walks up and says bluntly "You have Crohn's Disease. Here's a prescription. Whatever Crohn's Disease symptoms you have, this should make go away. Whatever is left probably isn't from Crohn's Disease. See me in 3 months to let me know how this works."
My girlfriend literally snatched the colonoscopy report and prescription out of his hands, and read out loud "Entocort. That's what they started me on."
My girlfriend was surprised, but not so surprised. This GI is her GI, and she knows his reputation as being among the best in the US regarding his research into Crohn's Disease and treatment. After that initial moment of sheer silence, she just said "Two peas in a pod!" Does anyone know about that "moment of silence" when you get the diagnosis?
Well I guess that's that? I think I might hold a new record. It's taken less than a year from my onset (only eleven months) to get a diagnosis. Six of those eleven months were wasted with the wrong doctor. I KNOW that's not too long compared to many CD sufferers before me - like many of you in this forum. It took over 2 years for my girlfriend. It took longer for her sister.
I tell you what, though. I knew it was Crohn's Disease. It was in the fall of last year when I was pooping up a storm, I was off work, and I got so fatigued. I was on my bed crying, and I don't know if I asked myself out loud, or if it was just a thought, but I wondered "What's wrong with me?"
Some kind of "inner voice" responded with "You've got Crohn's Disease". Since then, there was never any doubt in my mind. I don't know how or why why that "inner dialogue" happened, but it sure enough was accurate.
Well let's see how Entocort works on this "Crohn's Ileitis".
I guess I'm one of "you all" now...a lifetime member of your club. Well, I guess it's "our club". I'm joking. This is a serious disease with no known cure. I believe it's 60-80% of us will eventually need some kind of related surgery. Of that group 50% will need additional surgery. There are many here online who haven't yet been diagnosed, and are probably walking around as sick as hell with a "black box" diagnosis of "Irritable Bowel Syndrome" (IBS).
IBS is not small potatoes, either. Lord help anyone who has a chronic bowel problem whether it's IBD or IBS - you're in for a rough ride. I think that it's sometimes an "easy way out" for the medical profession that don't have the time or passion to dig deeper for a thorough diagnosis. There is so much that the medical world doesn't understand about Crohn's Disease, much less the "world at large" who no little about it.
What a relief it is to find people who understand our "peculiar" disease. Heck, when you and I walk into a room with people who knew us earlier ("BC" - before Crohn's), most of the time we'll look decent, our faces will have color, and we've lost some 20-80 pounds. Everyone thinks we look great, and they assume we must feel great. I see your picture avatars, and each of you puts your best foot forward. Most of us do.
But when we're "flaring", NONE of us will be in the room with other people, or want to have our pictures taken because we feel so bad, and we feel badly about ourselves. I guess sometimes I just don't want to burst the bubble to let others know how and why I got to looking so much "better" which really only means "thinner".
Thank you all so much for participating in this web forum. By visiting here, I know I spared myself from several drawn-out years of pain and suffering from Crohn's Disease. I'm also thankful for the hard lessons some of you endured before your diagnosis, that made my experience with this disease much softer and easier.
