- Joined
- Jul 8, 2009
- Messages
- 10
Hello all,
I did a bit of reading on the forum last night, and my heart goes out to all of you. It also makes me wonder if maybe we are barking up the wrong tree again in looking into Crohns, as my symptoms are not near as bad as many of yours.
I hope you don't mind me still asking the questions in the hopes that you might have some ideas. I too am very leery of accepting the word of any doc, and refuse to do it over my own intuition. I've been burned a few times before, including at least one unnecessary surgery, so I know they are not Gods. I've found that people who have personal experience often have better leads than the docs who really don't care much (as a whole), how we feel.
I was diagnosed with IBS in my 20s (I'm 36 the end of this month). Spent those years working as a home-based therapist with tons of bathrooms in Southeastern MA mapped out. I worked a stressful job, with lots of people who could have cared less about the kids that we worked with, so I chalked it up to that. Oh wait, prior to that, in 1997, I had my gallbladder out if that's significant.
The IBS has been mostly in check since I stopped working that job, with some bouts at the beginning of each pregnancy (3) and some after. Fast forward to 2005 when my dd, then 2, developed symptoms that prompted the NP to test her for Celiac. She came up high on one panel out of 5 (for those that know, the IgG, which is not very specific to Celiac, but I believe one of the first to be elevated), which started me on a journey to understanding intestinal health. Well, first, I ignored my instincts that something was wrong, until little guy was born a couple of years later and had very similar symptoms to dd. Finally, I trusted mommy gut.
In March of last year, I had a car accident. Turns out, I have sleep apnea, and had no idea. None of us was injured, but I started having RUQ pain around then. Well, it wasn't the first time. I used to joke that they had left an instrument inside of me during the gallbladder surgery, b/c it sometimes felt like there was something there, but it never caused me a great deal of discomfort. I never hit anything, and the seat belt really doesn't cross there, so I think the accident was a red herring, and never the cause of the RUQ pain.
The pain eventually subsided, until I had this nasty nasty stomach virus back in December of 08. I don't vomit generally, I have diarrhea, so it got to the point where there was no point in laying down anymore and trying to sleep. This kicked the RUQ pain into high gear.
Since then, I've had an abdominal u/s, ct scan, pretty extensive blood work including liver enzymes, and a whole slew of other things that I'm currently forgetting (and have misplaced the darn results sheet for); nothing showed.
The gastro, who had previously been very receptive to my self-reports (even testing me for Celiac despite the fact that I am overweight and my dd was eventually diagnosed by an "alternative" lab that does stool testing, arguing that celiac will first show up in the stool not the blood), finally wrote me off when I admitted to him that extra activity did seem to make the pain worse at times. It feels to me like something is in there, under my ribs, and at times it feels swollen and then it will be painful. It's very hard to describe.
He did an endoscopy, and reported that I have a polyp in the small intestine, a hiatal hernia, and silent GERD. No evidence of celiac, but he did tell me with measurable tTg, despite being largely Gluten-Free, that I should also be strictly Gluten-Free. The guy is pretty remarkable that way; most docs will dismiss anything but the gold-standard biopsy results, arguing that being GF is too restrictive (it's really not that bad).
As I said, he later wrote me off, when he did an exam, and pushed on my ribs, asking if it hurt. Duh, of course it hurt. He never pushed in and to the left where the pain has generally been localized. He told me to take Naproxen and to call him if any new symptoms came about. Oh, he had previously surmised that it was possible that I still had gallstones despite not having a gall bladder and that scar tissue had built up where the cut a hole for them to pass, not allowing the stones to pass. He was talking out loud, so I may be misunderstanding some, but that was the gist. He said that the ERCP carries risk, and he didn't think it was warranted given that activity increases the pain (which interestingly, it does seem to at at times, but I'm not certain now).
Sure enough, I start developing fecal incontinence, and the pain, though at times a bit better, had bouts that got worse again. The pain can be a pulling sensation along the ribs, sometimes like a stitch in the side, other times a burning, stabbing pain deep. It affects my daily life.
It extends along the back with what I would describe as a fullness sensation. Like something is pressing against the ribs (in the front, along the side and in the back) that shouldn't be. I've had frequent bouts of diarrhea, urgent need to go to the bathroom, frequent acidy sensation in my rectum, increased flatus, nausea from time to time (mostly in the morning), and the fecal incontinence, which I find very stressful.
Continuing exhaustion, at times with no explanation (i.e. 8 hours of sleep with the CPAP on the entire time). I believe this is tied to the unexplained pain. Sometimes the burning comes up under my bra band very deep and briefly intense. I've also had several bouts of intermittent chest pain, which could be anxiety but I don't think so.
So, there you have it. I finally decided to call the gastro and risk being dismissed further, but whatever I said to the receptionist got me straight to the nurse, who is the doc's wife, and appears to run the show in many respects. She immediately said that we need to do a Crohn's and UC work-up, as well as Lyme tests, FOBT (and other stool tests) and probably some other things she didn't share.
I have a colonoscopy scheduled for the 20th, which of course I'm not looking forward to, having had a flexible sigmoidoscopy in 1999, for unexplained rectal bleeding *only* during menstruation, which continues to this day. If I don't need a colonoscopy, I'd much rather not do it, of course.
Sorry so long, but I've found it better to share too much than not enough. I've probably left several things out as a matter of fact, so feel free to ask.
And thank you so much. Many wishes for improved health for all of you!
Christie, NY
I did a bit of reading on the forum last night, and my heart goes out to all of you. It also makes me wonder if maybe we are barking up the wrong tree again in looking into Crohns, as my symptoms are not near as bad as many of yours.
I hope you don't mind me still asking the questions in the hopes that you might have some ideas. I too am very leery of accepting the word of any doc, and refuse to do it over my own intuition. I've been burned a few times before, including at least one unnecessary surgery, so I know they are not Gods. I've found that people who have personal experience often have better leads than the docs who really don't care much (as a whole), how we feel.
I was diagnosed with IBS in my 20s (I'm 36 the end of this month). Spent those years working as a home-based therapist with tons of bathrooms in Southeastern MA mapped out. I worked a stressful job, with lots of people who could have cared less about the kids that we worked with, so I chalked it up to that. Oh wait, prior to that, in 1997, I had my gallbladder out if that's significant.
The IBS has been mostly in check since I stopped working that job, with some bouts at the beginning of each pregnancy (3) and some after. Fast forward to 2005 when my dd, then 2, developed symptoms that prompted the NP to test her for Celiac. She came up high on one panel out of 5 (for those that know, the IgG, which is not very specific to Celiac, but I believe one of the first to be elevated), which started me on a journey to understanding intestinal health. Well, first, I ignored my instincts that something was wrong, until little guy was born a couple of years later and had very similar symptoms to dd. Finally, I trusted mommy gut.
In March of last year, I had a car accident. Turns out, I have sleep apnea, and had no idea. None of us was injured, but I started having RUQ pain around then. Well, it wasn't the first time. I used to joke that they had left an instrument inside of me during the gallbladder surgery, b/c it sometimes felt like there was something there, but it never caused me a great deal of discomfort. I never hit anything, and the seat belt really doesn't cross there, so I think the accident was a red herring, and never the cause of the RUQ pain.
The pain eventually subsided, until I had this nasty nasty stomach virus back in December of 08. I don't vomit generally, I have diarrhea, so it got to the point where there was no point in laying down anymore and trying to sleep. This kicked the RUQ pain into high gear.
Since then, I've had an abdominal u/s, ct scan, pretty extensive blood work including liver enzymes, and a whole slew of other things that I'm currently forgetting (and have misplaced the darn results sheet for); nothing showed.
The gastro, who had previously been very receptive to my self-reports (even testing me for Celiac despite the fact that I am overweight and my dd was eventually diagnosed by an "alternative" lab that does stool testing, arguing that celiac will first show up in the stool not the blood), finally wrote me off when I admitted to him that extra activity did seem to make the pain worse at times. It feels to me like something is in there, under my ribs, and at times it feels swollen and then it will be painful. It's very hard to describe.
He did an endoscopy, and reported that I have a polyp in the small intestine, a hiatal hernia, and silent GERD. No evidence of celiac, but he did tell me with measurable tTg, despite being largely Gluten-Free, that I should also be strictly Gluten-Free. The guy is pretty remarkable that way; most docs will dismiss anything but the gold-standard biopsy results, arguing that being GF is too restrictive (it's really not that bad).
As I said, he later wrote me off, when he did an exam, and pushed on my ribs, asking if it hurt. Duh, of course it hurt. He never pushed in and to the left where the pain has generally been localized. He told me to take Naproxen and to call him if any new symptoms came about. Oh, he had previously surmised that it was possible that I still had gallstones despite not having a gall bladder and that scar tissue had built up where the cut a hole for them to pass, not allowing the stones to pass. He was talking out loud, so I may be misunderstanding some, but that was the gist. He said that the ERCP carries risk, and he didn't think it was warranted given that activity increases the pain (which interestingly, it does seem to at at times, but I'm not certain now).
Sure enough, I start developing fecal incontinence, and the pain, though at times a bit better, had bouts that got worse again. The pain can be a pulling sensation along the ribs, sometimes like a stitch in the side, other times a burning, stabbing pain deep. It affects my daily life.
It extends along the back with what I would describe as a fullness sensation. Like something is pressing against the ribs (in the front, along the side and in the back) that shouldn't be. I've had frequent bouts of diarrhea, urgent need to go to the bathroom, frequent acidy sensation in my rectum, increased flatus, nausea from time to time (mostly in the morning), and the fecal incontinence, which I find very stressful.
Continuing exhaustion, at times with no explanation (i.e. 8 hours of sleep with the CPAP on the entire time). I believe this is tied to the unexplained pain. Sometimes the burning comes up under my bra band very deep and briefly intense. I've also had several bouts of intermittent chest pain, which could be anxiety but I don't think so.
So, there you have it. I finally decided to call the gastro and risk being dismissed further, but whatever I said to the receptionist got me straight to the nurse, who is the doc's wife, and appears to run the show in many respects. She immediately said that we need to do a Crohn's and UC work-up, as well as Lyme tests, FOBT (and other stool tests) and probably some other things she didn't share.
I have a colonoscopy scheduled for the 20th, which of course I'm not looking forward to, having had a flexible sigmoidoscopy in 1999, for unexplained rectal bleeding *only* during menstruation, which continues to this day. If I don't need a colonoscopy, I'd much rather not do it, of course.
Sorry so long, but I've found it better to share too much than not enough. I've probably left several things out as a matter of fact, so feel free to ask.
And thank you so much. Many wishes for improved health for all of you!
Christie, NY
