Crohn's Disease Forum » Support Forum » Misdiagnosed as Anorexia / Eating Disorder - similar experiences?

07-17-2016, 12:31 PM   #1
Join Date: Jul 2016
Misdiagnosed as Anorexia / Eating Disorder - similar experiences?

Hi everyone,

I was diagnosed in the US with Crohn’s in 2005, and then I moved overseas in 2007. Having lost my insurance, I decided to take care of myself as best I could “naturally” (using the logic that people have been suffering from similar problems for ages but medicines have only come into play recently). So I ate well – and an awful lot, since I have diarrhea all the time – and almost totally naturally (fresh veg from the market, fresh meat from the producers, fresh dairy from the dairy guy …), which was easier to do in the places I was living than it is in the US. For the most part this approached worked really well! I had fewer problems than before, and they usually went away quickly when they did pop up.

In 2013, though, I went through about 8 months of terrible, crippling pain, and I was probably having between 10 and 20 diarrheas a day. I finally went to the hospital to get check out, they gave me an infection and made me a lot worse, and then – without ever doing a colonoscopy or anything – accused me of having anorexia (“there is no other way that your weight could be so low”). Now, I have never not-eaten, I have never vomited, I have never gone and exercised for ten hours straights … etc. I don’t think I’m fat. I don’t even have a scale. Etc. Etc. Bottom line: I’m not anorexic. That just pissed me off.

Anyway, they accused me of anorexia and sent me to an anorexic prison. They tube fed me for five months. I begged them to stop. You can’t imagine the pain. When I continued to lose weight – I lost 20 pounds while in the hospital/prison, which of course they blamed on me “since you’re anorexic”, though I don’t know how I could make myself have diarrhea all day long – they punished me by increasing the speed of the feeding tube. That, of course, was more painful and caused even more extraordinary diarrhea and … It was Hell. I don’t know what else I can say.

During the entire time I was there – imprisoned, Watched, belittled, I would describe it as “Un-Personed”, that’s the best language I’ve come up with – they never observed any anorexic behaviors or thoughts or etc. etc. (I explicitly asked them this, many times, which they understood as confrontational, and which they punished with more punishing treatment.) Finally I escaped. That’s unbelievable, but it’s real: I escaped from the hospital-prison, went directly to the airport, and got on the first plane out of Britain before they could alert anyone. (Yes, it’s not believable. I’m aware of that.)

I have read some other stories on here about people with Crohn’s being misdiagnosed as anorexic. Most of them are older, though. Are there any others out there with recent stories of misdiagnosis? Have you “done” anything about it? I just can’t get over “what happened to me”. To be locked up … to be Watched, with a capital W (you roll over in the middle of the night, and there are eyes – the monitors/guards/torturers – watching you … to have high-speed liquid shot down my esophagus in the same techniques they use on the Guantanamo prisoners … Well, I can’t get over it.

The bottom line is that I want to “do” something about it. I’m looking into options. None of the paths toward “redress” seem easy, and all seem impossibilized by the absurdity of this story. (Again, I realize it is absurd, surreal; there’s no way around it.)

Have any of you been similarly misdiagnosed with anorexia / an eating disorder and treated / mistreated as such? Can you tell me about your experience? Has it … “affected” … you? (It’s affected me. I’ll tell you, for me,, I would say that once Un-Personed, “you can never go back”, you can never reclaim your full self. There’s something the abusers took from me that I can’t get back … ). And … this is a big one … have you figured out any way to “redress” the badness that happened to you as a result of misdiagnosis?

I have to “do something”. There are really two levels of “badness” that I’d like to address: The first is that people with real, physical problems can get accused of anorexia / an eating disorder / (maybe some other psychological disorders, too?), and suffer the consequences. And the second is that what I “witnessed” - the treatment of people who really do have anorexia, who refuse to eat, who vomit, etc – is absolutely inhumane. Yeah, these people are not-eating etc … but for crying out loud they’re people. To treat them like animals – the fois gras ducks?, or as political prisoners – think the hunger strikers in Northern Ireland, the Soviet dissidents of the 1970s … - is brutal, terrible, evil. So, two problems: (1) facile misdiagnosis; and (2) even in real cases of eating disorders, brutal treatments that are hidden from the public eye and absolutely immoral as regimens of treatment enabled by legal and policy structures.

Does anyone have any experience of anything similar … Any thoughts or comments or advice to share???

07-17-2016, 01:57 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I am sorry you had to be treated as such. There is no excuse.
07-17-2016, 05:38 PM   #3
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Join Date: Jan 2014

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That's horrible. I'm so sorry that happened to you. After I was diagnosed I failed to gain weight as it was expected I should with treatment (I lost 20 pounds and was underweight before losing the weight). I refused to drink ensure (because it was gross and made me feel bleh) I also couldn't eat enough due to the constant pain, diarhhea etc.

This resulted in my doctor calling my mother and asking her if I was anorexic ( without telling me he was doing this). I was hugely offended and angry he would go behind my back and not directly ask me, especially since I was 18 and of legal age. He backed out after my mother told him I wasn't but it took a bit for me to get over it so I can only imagine how horrible your experience was.

I would look into filing a complaint about the doctor that decided to admit you as well as the facility itself. Good luck.
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07-18-2016, 07:54 AM   #4
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Join Date: Jun 2015
This must be so difficult and I'm sorry you're being put through it. Stay strong, you are doing a great thing by continuing to advocate for yourself. Crohn's is a complex disease and it is often misdiagnosed at first which is one reason why second opinions can be useful. Seeking a second opinion from another doctor or specialist is a way to confirm the diagnosis and explore different treatment options, so that may be something to consider.

Crohn's Disease Forum » Support Forum » Misdiagnosed as Anorexia / Eating Disorder - similar experiences?
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