Improper treatment through ER doctors lack of proper investigation. Anyone had this?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

T

Tim

Joined
Mar 30, 2011
Messages
74
Hey my Fellow IBD'ers. So I was wondering has anyone had this or a similar situation as I want to take the opportunity to in a word "vent my spleen". I have been sick for a good few weeks, been having pain, no appetite, vomiting, diarrhea etc. I had been to one of the local Emergency rooms for help and they tested my blood and x-rayed me and said I was fine and sent me packing (even though normal bloods do not indicate absence of inflammation or flare).

So I pretty much tried masking my symptoms with pain pills and prednisone. However after waking up yesterday morning with unbearable pain and bowel urgency I was sent to a different hospital than the one previously. My bloods where only slightly elevated and appeared normal BUT I had a CT scan which showed mass amounts of inflammation through 2/3 of my colon (large intestine). Needless to say the doctor wanted me admitted to hospital straight away and to start me on IV steriods and 5-ASA enemas. Problem is I have been going to doctors for weeks telling them I am unwell and they tell me bloods are normal so not to worry. Does anyone have experience with doctors be borderline sadistic and not bothering proper investiagations and leaving you to suffer. I myself am infuriated at the health system as I have had to get investigations done privately to get result and it's costly. Where as the public system could have done it for free but they are too quick to dismiss things based on unreliable sciences. Blood results should not be used to rule out IBD flares. The only way to rule an IBD flare IMO is to either do a CT scan and/or a colonoscopy, endoscopy and look for themselves. I mean if they have said 2/3 of my colon are inflammed but my bloods are fairly normal. Surely that would indicate bloodwork means nothing.

It's so heartless how a doctor dismisses my symptoms and tell me I can't be in that much pain or discomfort because my blood is normal. Bloody ******** if you ask me. Anyone got any tips on how to deal with theses situation when in them. I don't know how to get around it. Sick of them waiting until it's nearly too late to help me rather than helping me catch it early. Let me know any of your stories.

Thanks, Tim :angry-banghead:
 
There are some people that do not show inflammation in their blood. Now you have it documented that you were extremely inflamed but with normal bloods you should explain that if/when it happens again.

On the other hand, there are people whose bloods go way off before any noticeable symptoms appear.

So either way,bloods are not the definitive answer! And you should stick to your guns and demand a gastro referral.

For what it's worth, here we have IBD nurses who can arrange for urgent investigations, gastro appointments etc. Before going to A and E I would always try to contact my nurse to ask her advice. The ER docs aren't specialists and can only really help with symptom relief, and life and death emergencies, and bumping up the waiting lists for a gastro.
 
Make sure that your visits are documented by the doctors you see. Not sure if you have the ability to sue for malpractice (not something I regularly recommend), but as you said many docs just want to free up the bed for someone who has a problem they can readily see. Can you refuse to go until seen by someone else?

My experience a couple years ago had a supposed Crohn's specialist wanting me to wait several months with fissures and anal strictures without medication while waiting for remicade. I eventually fired him.
 
Ha..... I was sent to the ER 2 times this year with abdominal pain and problems with going to the restroom only having blood and mucus come out and each ER visit was with a different hospital and both times I was told "oh well you have crohn's so you know what’s going on, we will put you on some IV and let you get some steroids and send you home soon." I hate doctors sometimes! I have also been accused of having an STD (while not being sexually active at the time) because there was just no excuse of having ulcers in my mouth! I hate to complain but you are right going to the hospital can be a frustrating process but it is your body you know when something is not right.. Not the doctor... if you feel like something is wrong they should have the obligation to find out what it is that is going on with your body! As for the doctor who said your pain shouldn't be that bad...WOW...WOW.. Heartless is the only word for that Doc and he or she is not the only one out there in it for just the MONEY!

Sorry this had to happen to you!
 
I'm glad you finally got a doctor to run proper gets and find out what's wrong. I'm currently lost in the system :( I went to my OB (I'm pregnant) for severe pain and thinking I'm in a flare. She told me my vitals were normal so it wasn't an emergency. What the? So I requested she give me a referral to a GI. I think doctors are sometimes too busy to actually look further into what's causing problems.
 
I'm in the same boat right now!!!! Currently waiting for a GI visit for testing of suspected Crohn's. Went to my ER last week for severe pain, fever, excessive bloody diarrhea, rapid weight loss......the bozo of a doctor I saw claimed my test for c. Diff was normal. Very interesting, considering he never even took a stool sample to test! Then he tried to discharge me with someone else's diagnosis. Talk about ineptitude!!!!
 
Oh my god, that's awful. what is it with these lazy doctors and blood tests. I am putting an official complaint into the hospital that sent me home sick. I am going to show them my positive test results from the other hospital and see how it goes. They said nothing was wrong but now I have evidence that 2/3 of my colon is inflamed I might have a chance at somekind of apology. Thanks for sharing your stories guys. This site is comforting, it sucks I'm not the only one cause it means more people are suffering unnecessarily but maybe we can come up with ideas for one another to fight back at theses doctors who don't take us seriously and send us home sick.
 
That really sucks that happened to you, I'm so sorry :(

In many ways, I feel sorry for doctors as well, though. Let's take ER doctors for example. They're trained to differentiate the life threatening from the not and handle that which is indeed life threatening. If you went in with a heart attack, I bet you'd be talking about what a stellar job they did. One of the easiest ways to tell if someone is REALLY sick is to check their blood levels for a variety of markers. If everything comes back normal then to an ER doctor, your life is probably not in jeopardy. And indeed, your life was not in jeopardy, you were experiencing something that probably felt even worse than what most people whose lives ARE in jeopardy experience.

I've been educating myself about IBD for a couple years now and still barely have a grasp and that's all I've been focusing on. I feel bad for the doctors we expect to know everything about IBD and handle heart attacks and strokes and lacerations and everything else an ER doctor faces. Frankly, it's just not possible. I spend at least 2 hours a day educating myself in this one subject and I still feel overwhelmed. I can't imagine what they must feel.

Now, I'm not excusing the fact that they screwed up. It shouldn't have happened and you deserve proper care. But you asked for tips and that's where this entire post is heading...

What is my tip? Understand that there is absolutely no way the vast majority of doctors, including some GIs, are going to know how to handle all facets of Crohn's Disease or other forms of IBD. As such, we have to educate the ever-loving heck out of ourselves so that we can advocate for ourselves. We have to be able to talk to them on their (or a higher) level so that we can ensure that we get the care we deserve. It shouldn't be this way, but unfortunately, it's the reality of the situation.
 
Well-said, David. Most doctors are not the least familiar with IBD. On top of that, most of the doctors you see in the ER are residents with limited real life experience in general. We have to educate them.

They have these step by step protocols they follow. We don't fit the regular protocols.
 
To be honset some of the best care I have had is from the emergency room- IBD symptoms are worse at night. I have through out my flares gone to the ER and they have called the Drs in to figure out whats wrong with me. They are sometimes more agressive with treatment. (not just with me but my kids too)

My kids have been treated more aggressivly- if you have ever had the pleasure of a kid with croup, my Ped would say oh well, it will run its course- ER with a kid who cant breath because of the croup? Short of steroids and it just about knocks your 5-7 days down to one or two days. Also our ER doc that we seemed to get every year with my youngest for his middle of the night asthma attacks. He remembered seeing him every year at the same time- from 1-5 and called for his ER records and figured out it was the Christmas tree!! Nobody else figured it out- yep not even the parents!! :voodoo:

That being said- I have had much trouble with Drs getting a Dx and keeping it!! Moving I had to get sick enough to get a Dx again! That happened again with the help of the Er doc calling a GI to see me in the middle of the night. IBD sucks! It seems not many Docs "buy" into it until "we" are in a creek without a paddle!!

Good luck!

lauren
 
Great post David, you have obviously reached a far more mature outlook on these situations than I currently have, What you said was true, level headed and humbling. So you are saying to head towards shifting the onus more on ourselves as far as advocating and trying to give doctors more slack as they do have a hard job and are not monsters and maybe understand proper communication to get your needs met. Rather than get lost in the system and chucked out unhappy. Very good, definitely something I will be making an effort to excersise. Thanks :)
 
Read, read and read some more Tim. Educate yourself to be the best possible advocate you can be for yourself. Let me explain...

My daughter was diagnosed nearly six years ago...on the operating table and we came within a whiskers breadth of losing her. She never had a scope as Crohn's wasn't even on the radar. For months her bloods consistently returned normal results. One week prior to that emergency surgery she had CT Scan with oral and IV contrast and it returned as grossly normal. There was no way that she developed peritonitis, a perforated and an infarcted within a week with absolutely no sign of a problem on that CT. The legacy of that is I never believe blood tests with her unless they match what I see in front me.

Another legacy of Sarah is when my son first became ill although Crohn's was the farthest thing on my mind, symptoms so very mild, I went on the attack. In my son's case he was the opposite, his bloods show every little thing with him even before symptoms. He was diagnosed in two weeks but following that diagnosis he developed complication after complication that necessitated a number of hospital admissions.

During that time I of course came into contact with many a health professional that knew next to nothing about Crohn's. Some admitted it and others preferred to pretend they did. I don't expect them to know but by the same token I don't expect them to treat me like I don't know either. So how do I overcome that, I tell them, in a calm a respectful manner, that I have been living and breathing this disease for six years now so tell me something I don't know about Crohn's. I am a nurse and I can tell you now that those health professionals that are confident in their ability have no issue in admitting that you know more than they do, it is the insecure and/or arrogant that can't admit to it.

As David has said, you can't know everything about everything, nobody can, it's impossible. By the same token you deserve to be listened to and treated with respect, don't hesitate to tell them that either. :wink:

Dusty. xxx
 
Hey Dusty, Thanks so much for that reply. So it definitely is the consensus by those of you who are more wise and experienced with dealing with Crohns that the best tool to have is communicating your needs to the doctor. I guess I will just have to practice that more from now on and demand the further tests. For us with Crohns or UC it's so obvious when something is up and the worst part is being told you are fine. That is also super weird that nothing showed up on your daughters CT when she was obviously ill. So that could mean in theory even a normal CT scan isn't a definite at ruling out problems. I'm having another colonoscopy this week and am currently managing at home as an outpatient on steroids and salofalk enemas and pain relief when needed. I am hoping after my scope this week I will forever have evidence that proves further tests are needed and hopefully I will not be under investigated ever again. The only worry I have is being too weak/ill to argue if I was in a bad way and happened to get a bad doctor. But I guess most of the time I have the strength to be able to start pushing for further tests from now on and refuse to leave without proper investigations. I have also raised the issue with my local hospital about them discharging me when I was ill and I think they are liaising with the Emergency staff to put in my notes that they all need to look after me better from now on, as I'm sure at the end of the day their intentions are good. So I have faith they will be better in the future. It's always good to get opinions and wisdom of you guys who have been going through or looking after someone through this for a longer period than I have. For me it's been 1 year and a half. So I'm still learning and I appreciate all the tips and advice you guys have, this is a good site/forum for us. Thanks guys :)
 
Yes Tim, you need to communicate clearly and concisely about what you are experiencing and what you expect. Explain what you normally feel with your Crohn's and what is out of the ordinary for you. If you are in a state that makes it difficult for you to communicate your needs then if possible have someone with you that can advocate for you. With my children I have a file made up with all tests results, doctors letters and so on in it and take that with me to the ER was well.

If you feel you aren't be listened to or you think they may not believe you then have them ring your gastroenterologist and them seek his advice.

You have done the right in making contact with the hospital. I'm sure there was no malice intended but if no one complains nothing changes.

Dusty. xxx
 
Miss underestimated
I was just explaining where I have had better luck- I
Think a good
Portion of us have trouble getting drs to "believe" us nd take us
seriously!!

I know now hard it is dealing with drs
Lauren
 
Hi Tim,
I am one of those whose inflammatory markers don't rise even when in a really bad way. I always try and see my usual gastro who knows this- so if it means waiting a day until I can contact my IBD nurse who can arrange this I will.
On the occasions where I have ended up in the ED, the first thing I tell them is that my inflammatory markers are never raised and also point out that 25% of those with Crohn's are similar...so as to educate them.
Luckily this has always worked for me.
 
It's so heartless how a doctor dismisses my symptoms and tell me I can't be in that much pain or discomfort because my blood is normal.
Thanks, Tim :angry-banghead:[/QUOTE]

Tim, I have been going through this with the doctors for over a month now. I have had pain in my upper left side. I have been to 2 different hospitals, 3 different doctors and numerous tests. They look at me like I'm crazy and like all I am there for is pain-meds. I was diagnosed with Crohns disease 5 yrs ago. This doesn't exactly feel like a flare up though. i have been told I have a kidney infection and stones on that side. However the pain is still there and I have been rechecked for kidney infection and its saying negative. I have been thinking that they will never give me an honest answer of what it is. It makes me really nervous and scared to think of what it could be. Sometimes the what ifs make things even worse than they really might be. I just would love to have answers. I hope that they can figure out what your situaation is. If they finally let you know, please keep me informed. Thank you and GOD bless!
 
Hey guys, Thanks for those stories and advice again. I will definitely let them know I am one of the 25% whose inflammatory marker barely rise during a flare as seems to be the case with my CT result showing inflammation but bloods are normal. Anyway MOMMA OF 5 I totally get your position you are in and how they look at us like we're crazy. That is them just projecting their lack of insight onto us. They don't want to admit they're clueless so instead treat us like we're making it up and that way their ego doesn't get affected. I think you should demand a CT scan or MRI urgently. especially if you have pain. I was treated like i was after pain pills until they found all the inflammation in the CT then it became real although the people that did the CT scan were compassionate from the get go even before they had results. Anyway my point is don't let i get you down/ Get some urgent tests done immediately. There is alot of awesome advice on this thread so far for people in our situations. I hope you get better soon too. Peace and Love - Tim :)
 
From what I have read on it, one of the ingredients is buscopan which is good for abdominal cramps and pains. I use that alot for that reason. Looks like it could be worth a shot. Sounds like it would relax the whole GI tract and reduce cramping and spasms.
 

Similar threads

L
Isolated Perianal Crohn’s - new here
Replies
1
Views
722
MrWheat
M
B
Normal calprotein and Chrons disease.
Replies
12
Views
2K
betta
B
C
Atypical Crohns
Replies
2
Views
1K
Chrissie47
C
C
GI says he is 99% sure I have chron’s
Replies
23
Views
3K
Bespectacledberries
B
K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M

Latest posts

Back
Top