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Crohn's Disease Forum » Support Forum » Vent Away » Lost Faith In Medical System - Drugs Almost Killed Me


01-16-2014, 09:40 PM   #1
LodgeLady
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Location: Westminster, Maryland
Lost Faith In Medical System - Drugs Almost Killed Me

Sorry folks I really need to express my lack of faith in our medical system. For over two years I have been suffering with violent attacks of vomiting, abdominal pain, diarrhea , nausea, weight loss. I've seen two different GI doctors, had 4 ER visits, multiple tests to only misdiagnose my condition.

So today I am finally taking charge of my own life! I am slowly bringing my frail condition back to life with nutrition, probiotics, calcium, Vit B's, D's, and rest. It seems this nonfunctining GB ( which was failing 4 years ago) is the root of most of my sickness. I blame my old GI for talking me out of surgery. I blame him for labeling me IBS. I blame my new GI for not ruling out gallbladder when I first came to his practice. I blame him for labeling me Crohns after only one positive lab finding( biopsy from colonoscopy). I blame him for starting me on Humira so soon which almost killed me. I blame them all ( primary doc too) for not listening to the patient! Why must I feel no one believes me when I say I am in pain

So I see my latest GI in 2 months. He wants to refer me to specialists. I want him to retest. I want him to know how I have suffered. I want him to take a step back and not think of us as numbers. I am hoping I can find the right words to tell him. Thanks for listening.....
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Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

01-18-2014, 06:02 AM   #2
UnXmas
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I think a lot of us have had similar experiences. I'm sorry this has happened to you as well.

Unfortunately we are limited in what we can do for our health ourselves, and I know how horrible it feels when you don't trust doctors and yet still find yourself dependent on them. Sometimes doctors just make mistakes, but sometimes they seem to go out of their way to avoid treating us properly. (In fact I don't think it just seems that way, I'm pretty certain I've had doctors who definitely do that.)

Is your diagnosis now certain?

If you want your doctor to understand what he did wrong and how it made you feel, I'd recommend not doing it in a medical appointment. Write a letter to him instead, or see if there's an official complaints process for the hospital or medical system and use that. Bringing things like this up when face-to-face can be difficult, and appointments should be kept for medical consultations and keep to a set time-limit. Writing it down will give you plenty of time to find what you want to say and make sure it's constructive. I think if you feel a doctor has made too many mistakes, it's better not to continue being his patient - you're never going to have a good and trusting relationship with him, and he may feel it difficult to continue treating you as a patient once you've criticised his work.

Find a new doctor; write to the ones that have failed you. I hope you start having more positive experiences from now on.
01-18-2014, 06:17 AM   #3
LodgeLady
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Thanks UnXmas. You have given sound advice!

No my diagnosis is not certain ( IMO) one way or the other. The biopsy can not be ignored. That is conclusive for inflammation. I am giving myself 2 full months before I return to this doctor for follow up. I want to see how I feel.

I agree the office visit is not the place to vent. I will be professional, however, when I bring up the subject if retesting. He wants to discuss specialists. I want to know what it is they can do that he can't. I'm going to tell him that if this diagnosis of Crohns is re-confirmed, that I will need to depend on him to get thru this disease. I want to hear his response. If I get the feeling he is not comfortable treating Crohns ( and I definitely have it), I have to find a new doctor.

I truely believe people go into the medical profession to help people. But there is a money factor and I can't help feeling like one of the "cattle" at times.

This is why I pray. Because as much as we would like to be in control of our health, we are only allowed so much. But we have to be our own advocates. Doctors are not God. We need to focus on the end result, and that is getting better.
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