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GWG Focus Group Series # 3- Issues with Doctors-SD

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I feel like we confuse people because we're saying like, a lot of us don't have large intestines and what not. Several of us have been told that, "You can't live without a large intestine". And you're like no, I'm pretty sure you can. I'm walking, breathing and I don't have one. And you get-. I've got into fights with like residents and med students in the hospital and they're like, "Well now you're just being a bitch.". And I'm like, no you're just dumb and don't know what you're doing because if you read the chart you would clearly see that I don't have a large intestine at all and you don't need it. And, there was a resident or fellow, I don't remember which came in first, and I was explaining all my j-pouch surgeries, I had three. And he couldn't even-. He didn't quite understand the j-pouch. He kept going, J-A-Y. And I'm like, I go-. He goes, "No there's just two", and he's like, and I'm like no you're wrong I had three surgeries. So what does he do? He goes online in front of me and he goes to J-Pouch.Org. And looks up the information and like, j-pouch surgeries. I'm like, wait a minute. I'm in a doctor's office and you're reading the internet forums for j-pouchers. Something's wrong with this picture. Why I had an ileus and the nurses kept blaming my ileus on um, I was taking tincture of opium because, to slow my out put down cause I had a loop ileostomy at the time. And they kept on saying that I am taking too many pain meds and I'm addicted and blah, blah, blah. And I'm like, Tincture of Opium is like, to constipate you and slow your Peristalsis down and-. So now everybody in the E.R., "So it's just pain med.", you know, "She's just seeking." And all this. And so when I go in there when I'm dehydrated and you get a migraine. I'm afraid to ask for pain relief because I don't want to be labeled or, (whisper) "She must, you know-". The E.R. doctor told me, "Oh you're dehydrated you should just really save yourself some trouble.". Because my IV's kept failing because I'm so dehydrated, and I should just go home and drink Gatorade. I already tried that for three days and you know and so it's like how they treat you when you're there makes you anxious because you don't want them to think that you're seeking pain meds and what not and so you don't really get the help or you don't speak up for yourself and advocate like listen, this is what I need because I don't wanna be labeled. Not reading the charts. I had this doctor that I had been seeing for seven years so I really liked him and I ended up having to go into the hospital while he was on vacation one time and, not too long ago. So, the new doctor, the E.R. doctor, whatever, came in. He obviously didn't read my charts cause he thought I had food poisoning. And so after all the convincing and like, even the nurses knew me because it's the same hospital I go to. He starts going off about, "Oh your stomach looks fine. You're addicted to pain medication.". So I was in there and I was hurting really bad so I needed it. And then he convinced my doctor that I've had for seven years, that I see all the time, when he was on vacation, that I was addicted to pain medication and so they stopped all my pain meds. Patient denies weight loss and shortness of breath and heart palpitations. But, they'll put that when those were my complaints that I came in for. Um, and so it's that kind of stuff that I really wish doctors wouldn't do that because what it makes me feel then, is it makes me feel really stressed going into every medical situation. Because I have no idea what they're gonna say so what tha-, that affects my treatment in the hospital. I have no idea if what they're telling me is true until several weeks later when I get the reports back. And nutrition is definitely one thing that I really wish that um, my doctor, who I love. Um, but when I first got re diagnosed with Crohn's and was really, really sick and had major absorption issues um, I don't think that he-. I wish that he had-. Had referred me to, they have a nutritionist right in the GI department at the hospital. I wish that he had um, taken the time to do that. Um, but I feel like doctors really miss the boat when you know, you go in there and they're like, "We're gonna fix you. We're gonna get all this cut out. You're gonna like, go home and be wonderful." and then they do their job and they're really good at cutting things out or fixing a broken bone but the aftermath is like, now what? And then you're just home. I'm just an anxious person so I'm just sensitive that I'm still hurting. But they don't, they really miss the boat where pointing you to support groups or somebody to talk to or here's this organization or that organization. They just like send you on your way like you're fixed now. "I fixed you." But what about the aftermath? The whole brain thing and the whole like, body thing?. And, what just happened to me?

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Duration: 4 minutes and 54 seconds
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Language: English
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Posted by: ibdgirls on Jan 19, 2016

GWG Focus Group Series # 3- Issues with Doctors-SD

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