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What have doctors said to you???

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Crohn's Disease
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Posted 3/8/2012 7:27 AM (GMT 0)
when they didn't know what was wrong??
I will making a video sometime soon on what doctors say when they don't know what's wrong, and I would love some help from you guys! :) Just let me know what doctors have said to you when they weren't sure what was wrong, or when they didn't believe the pain you were in, etc.
Thanks so much!
Wishing you all a good tummy day!
Posted 3/8/2012 7:54 AM (GMT 0)
The first time I went to the ER, the doctor wanted to take out my appendix and my gallbladder. I was in the hospital for four days because the surgeon wouldn't agree to the surgery (smart man). He was the first person to mention crohns. I ended up signing myself out of the hospital and seeking the help of a gi.
Posted 3/8/2012 8:16 PM (GMT 0)
Thank you for your response! :) Thank goodness you didn't get the surgery and the surgeon knew better!
Posted 3/8/2012 8:52 PM (GMT 0)
My first GI didn't ask me about laxatives, but wrote in my medical records that he suspected this was the cause of my diarrhea. These comments caused my short term disability claim to be denied, so I went without pay for one month. Trust me, if I was going to fake an illness, I'd pick something much more glamorous than this!
Posted 3/9/2012 1:32 AM (GMT 0)
I've been told it's just stress when I was having symptoms and tests didn't show anything. Nice way of being told "it's all in your head" BAD DOCTOR!
Posted 3/9/2012 1:57 AM (GMT 0)
My GI now 99% of the time knows what's wrong & when he doesn't he'll tell me "I don't know but I'll try to find out." & he does.

His partner at his office on the other hand, everytime I have to see him when I get admitted at the hospital & he's on call, he always answers my question with "Well, it's autonomic.." Apparently, intense upper abdominal pain, rectal bleeding etc is autonomic.

 I also get "Well if you were a normal teenage, girl, Crohn's patient you would be like 500 pounds and look like a big zit by now. But you look like a millin bucks!" My GI told me that when he visited me in the hospital before.

"You're Crohn's doesn't play by the book"

"Welll...If you were like all the normal healthy girls in your class, the nerves in you wouldn't get sick. But you're not a healthy girl."

Past doctors responses:

"I'll talk to my colleagues & see if this real pain or you need to see a therapist."

"Honey, do you need some depression pills? I can get you some! I know you're too young for this."

"It hurts being in pain all the time don't it? Crohn's sucks don't it hon'?"

Posted 3/9/2012 4:51 AM (GMT 0)
"Well, your appendix looks ok compared to everything else, but your intestines look angry. I'm surprised you look as ok as you do"
before colonoscopy.." go litely??! There's nothing light about that stuff. Good luck kid"... thanks doc
Posted 3/9/2012 5:17 AM (GMT 0)
My daughter went to a group of 25 different GI's in one practice so if you were at the hospital, you might get any one of them. They never knew what was going on with you and it always amazed me most when one would contradict the last one. After years of fighting Crohn's, one doc told her he couldn't find any evidence she ever had Crohn's. Quite amazed, I told him about the colonoscopies, lab reports, blood test results confirming it and the resection paperwork I had at home. He told me to bring it in to him and he would take a look at. I told him it should all be in her files and he told me it would be easier for him to look at what I had because it's harder to see things on the computer. She had doctor's try to put her back on medications she had severe allergic reactions to because they couldn't remember and were too lazy to look it up I guess. And several times she was told she just thought she was in pain because the pain medication can fool your brain that way. Once the doctor had a pamphlet for a rehab clinic. And I was told by one that I was an enabler. But my favorite was the GI that told her she had pulled stomach muscles, even though it hurt when she ate.
Posted 3/9/2012 6:46 AM (GMT 0)
Hi SunshineSmile!

I love the videos that you have made, they are really funny and clever! I decided to comment here because I definitely had a rough time before I was diagnosed. I ended up in the ER one night with terrible RLQ pain, and guess what? Emergency Appendectomy! After I was sent home, the surgeon let me know that there was no inflammation or any other abnormalities with my appendix. Which means they removed my completely healthy appendix. Hmmmmm. Thing was, I actually did feel better after the removal so I decided to move on with life.

A few months before my diagnosis (and about a year after my appendectomy) I started having lots of symptoms, diarrhea, pain, nausea, fatigue; your basic Crohn's symptoms. I went to a walk in Dr. and they diagnosed me with......the flu! Of course, how silly of me and a what a waste of his time! Two weeks later, "the flu" was still very much with me so back to the Dr. I go. This time they ordered some stool samples (incredibly un-fun when you work in the lab and your co-workers will be analyzing the tests) and some pretty basic blood work. Everything came back pretty normal, so now I was diagnosed with.....Stress! I had researched a lot online, and working in the lab I had a good idea that this was most likely IBD (or at least IBS) related, but when I mentioned that I was accused of "self-diagnosis" or being an "internet-doctor". Ok then.

Alright so long story short (or shorter, ha-ha) I was literally told I had the flu about 5 times, told I was "internalizing stress" 3 times, and I was diagnosed with Endometriosis (which I don't have) before ending up in the ER with severe bleeding, and had a scope,CT, and Crohn's diagnosis the next day :-) I know Dr.'s are doing everything they can, but sometimes I feel like the system does fail, and I know I had it a lot easier than most. Good luck on the new video, can't wait to see it, and wishing you many happy tummy days in the future!
Posted 3/10/2012 1:12 AM (GMT 0)
Great subject matter! I'd love to see the video when you are done. I have been told many things by many doctor's when they don't know what's wrong.

My first GI dr told me to "stop overreacting because everyone has to eat" when I told him I was unable to eat due to pain and vomiting. A week later they found out I had perforated twice!


That I have a bacterial overgrowth when I complained of nausea, abdominal pain, and diarrhea. This was several years after my Crohn's Diagnosis.



My last GI told me that "Crohn's only attacked me once and will never attack me again. That my high CRP and Sed Rate and joint must be from something else because I don't have active Crohn's. I have clean colonoscopies, did I want a CT scan to prove I don't have active Crohn's". When I challenged her on that, and her yelling at me for taking meds the Rhuemy prescribed, she said "she has a problem with my attitude". I then told her I had a problem with her approach. She stood up, told me I had 30 days to find a new dr, and then walked out of the room.
Posted 3/10/2012 2:39 PM (GMT 0)
When my first fistula appeared, I didn't know what it was, it hadn't yet broken on the outside, but it was big, red and swollen, so I went to the ER. Even though there is a high prevalence of Crohn's in the area where I grew up, nobody seemed to know what it was, so they called a Gyno in. She told me to "Not wear tight pants". It took 2 years to be finally told it was a fistula, but I was told I didn't have Crohn's. And then a second one formed, and then a third. Still told that it was just a freak thing.

Then I had an attack of really bad abdominal pain (enough to make me pass out) and obvious signs of infection (I had had similar symptoms previous, but nothing enough to go to the hospital), I was given antibiotics and told that my appendix would have to be "watched". That year I had several "attacks" like this.

6 years now since the first sign (first fistula) and I have yet to be diagnosed with anything other than having a fistula problem.
Posted 3/11/2012 3:47 AM (GMT 0)
I had an abdominal abscess rupture and cause a really nasty cellulitis on my abdomen right by my belly button. I had a PA treating me in the ER and he was bent on a CT (I declined). When I finally convinced him to look at my cellulitis, he said "hm, that doesn't look that bad." I waited overnight for almost 8 hours until my surgeon came on and as soon as he saw me, I was admitted and having the abscess drained a few hours later.

I've also been told a flare was just IBS, by a PCP I tried.

I once asked my current GI (who is awesome) a totally off the wall questions and he said simply, "I have no freaking clue." I appreciated his candor. He did look up my question and call me with an answer the next day.
Posted 3/11/2012 11:37 AM (GMT 0)
"It's probably gas."
Posted 3/11/2012 6:48 PM (GMT 0)
This is an old & well known story among the other veterans here, but I had a college doc that wondered if my troubles might be caused by " something evil, maybe supernatural"
Also.. "Its just stress." too many times to count.

Sincerely,
Matthew
Posted 3/12/2012 11:01 PM (GMT 0)
I went to the ER with a huge abscess (eventually it turned into a r/v fistula), the lump was swollen and painful and I thought my insides were falling out (lol) and was given a very rough vaginal exam and told it was just a yeast infection.

When referred to the gyno, she was convinced I had herpes.

Posted 3/13/2012 1:49 AM (GMT 0)
I've got a good one Sunshine. One GI doc in a small town told me I needed to get a hobby, that bleeding from the rectum was normal and I was depressed. Yea, un, huh.......
Posted 3/13/2012 3:37 AM (GMT 0)
"You're too fat to have Crohn's, so it must be something else."
"It's all in your head."
"You're overreacting."
Posted 3/14/2012 4:32 PM (GMT 0)
"You are a conundrum" from my GI, as I might have either UC or Crohns colitis.

"If you see Rheumatology AND Infectious disease docs, then they really don't know what's wrong with you". From my GI again, during a recent hospitalization when I saw a million different docs to figure out what what going on.
Posted 3/15/2012 1:25 AM (GMT 0)
My GI has sent me to pain clinic. The pain clinic MD tells me my chronic pain which I have crohns now could be just from back problems.
Posted 3/15/2012 6:59 AM (GMT 0)
I spent 7 months going back and forth from about 8 doctors, who all told me you're imagining it.. It's probably growth pains... There's not a lot you can do take some ibruphen and drink lots of water (one I heard on a daily basis!!!!) after 7 months one doctor said, do you think you're depressed maybe? To which I responded, well maybe if you'd been stuck bed ridden for the past 7 months you would be pretty freaking sad and fed up! But that's is because I am sick, I am not sick because I am fed up and sad. To which he prescribed me anti depressants!!!

After that I was quite lucky in finding a good GI that almost always fixed me! But there were he colleagues I was not fond of. The ER doctors that would question you, do you smoke? No do you drink? I've maybe had half a glass of wine in the past 6 months... Well I hope you are aware that you should not be smoking and drinking that will definitely cause crohns to flare! Because obviously they have crohns an everyone's crohns reacts the same
Which is why I spent 3 months so constipated that my nurses and GI nick named me whinnie the pooh and told me I baffled them, whenever I get sick they are intrigued because its never like anyone else! Haha

Or the time I had arthritis and my ankle was the size of a football im in a wheel chair crying and I'm imagining it until my dad turns round and asks if he needs his eyes testing!!

Oh I could do this all day it feels so good to moan haha!

Horrible reading some of these stories some of them could have worked out quite dangerously! Can't wait to see the video!!
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