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Doctors don't believe I am bleeding

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Crohn's Disease
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Posted 2/3/2008 12:03 AM (GMT 0)
Hi guys, thanks for all the support. I know I'm anemic because my H&H are both low. I got some help from my peds GI doc. She printed out a bunch of pathology reports from my previous scopes. She then told me that the next time I go to the er to call her, and she will personally call the hospital and talk to the doctors. It is funny because I had a normal scope in August even though I was having lots of bleeding, and then three weeks later I had deep linear ulcers in my colon upon endoscopy. She reassured me that I am not losing my mind and I really have a problem. She was appalled at how I have been treated. I am getting copies of all my medical records, and I will be writing letters of complaint to the hospital and the professional organizations that my PCP and the treating GI doctor belong to. I have already filed complaints with the insurance company. Take care, and thanks for all the suggestions.
Posted 2/3/2008 1:49 AM (GMT 0)
Does you hospital have a patient advocate? I hope you have the strength to follow through with letters of complaint. Your state has a medical licensing board which is responsible for regulating the practise of medicine. The regulator should have a complaints process that you can follow if you do not receive a satisfactory response from either of your physicians. If you are thinking of following this through with a formal complaint, it would be best to first document your concerns in a letter to each of the physicians. I see you have already complained to the insurance company. In my experieince (i chaired the complaints committee for a provincial medical regulator in Canada for six years) health care providers and hospitals will try to respond verbally. If that happens ask them to document anything they say in a letter. If they don't then send them a letter that documents your understanding of the conversation ... If it comes to a formal complaint, the committee will have to rely on what's in the charts and what's been documented. In cases like this the charts are designed to protect the doctor and the hospital, not the patient. Go to the hospital and ask to see your hospital charts, if you don't already have them.

I'm sorry you've suffered emotionally in addition to your physicial problems. I think sometimes that the psychological trauma of suffering this kind of abuse is almost worse than the disease itself.

Hang in there.
Posted 2/4/2008 3:07 AM (GMT 0)
Thank God!
I've heard some idiotic behavior from ERs & hospitals, put this was becoming farcical. But deadly serious for you.
Best of luck.
And go rip those jerks a new one!

Matthew
Posted 2/5/2008 12:00 AM (GMT 0)
That's terrible the treatment you received in the ER and from your PCP. I'm glad your GI was able to talk to you and alleviate your fears and answer your questions. It infuriates me when I hear stories of people seeking medical assistance at emergency rooms just to be treated in such a terrible manner. They could have caused you grave harm with their misdiagnosis, especially since they told you to stop your meds!. They seem to forget patient's history's when they announce these dramatic findings. A clean scope does not mean you've never had crohn's, it just means the medications you're taking have been effective in the area they're looking at, and that they have to dig deeper for the answers to your symptoms.

Good luck and keep us updated when you persue this.

Bev
Posted 2/5/2008 12:12 AM (GMT 0)
I think a small bowel follow thru would help too. Before I was dx, I had a neg scope (not completed cause I woke up and put a hold on the doc). The SBFT showed the disease. I bled for 5 years before I was dx. Kept getting told it was hemmies. The psychological trauma is definately needs to be addressed.
Posted 2/5/2008 2:48 PM (GMT 0)
Actually, it wasn't the er that was the problem. The doc was wonderful and even asked me what pain meds work best for me. It was the adult GI doctor who doesn't believe I am bleeding, along with my PCP. So I am just waiting for my appointment at the Clinic. Hopefully it will be here soon.
Posted 2/5/2008 3:59 PM (GMT 0)
I am glad you are following up...people like that should find other areas in which to work. (If one is not a people person, DON'T work with people, no matter the profession...doctor, teacher, nurse, store clerk, etc.)

I just also had an idea that helps as well, since sometimes, when you do go to the ER, you may be dehydrated, etc, and no blood. When I had a lot of rectal bleeding (too much D for the occult blood test to show anything), I took a picture of the toilet contents and the amount of blood lost on my camera phone. It seemed to help the doctor quantify how much blood was lost, and what the problem was. (It's kinda gross, but a lot better than bringing the ACTUAL sample in).
Posted 2/5/2008 4:04 PM (GMT 0)

Hello and I am glad you have gotten some help and that you are advocating for yourself.  I am proud of you.  Take care and keep posting.  This is a great crowd here in the CD forum. 

Hugs at ya
Kitt

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