29-11-2018 06:16 PM
Hi, I have struggled for 5 years with an a-typical eating disorder, I have been on a Nasogastric Tube when I was in hospital and I will probably need to again, I am wondering if in Australia people are ever treated with a more permanent solution like a PEG Tube? I just want to know if that ever happens for ED patients before I speak to my doctor. I would really love a more permanent solution as all medications and therapies have failed and I no longer want to yo-yo with my weight, I want something that I can live with.
30-11-2018 10:43 AM
Hi and welcome @wedabest
Have you tried Googling the issue to find others who might have had this procedure? To my understanding, tube feeds are only carried out in patients with dysphagia issues or don't have enough energy to eat.
Can I ask if you've discussed this with your specialist, psychiatrist or GP? It's a drastic measure considering the infection and damage risks. It also means consuming real food isn't an option. Can I ask how old you are and what gender?
I've worked with patients who are tube fed but their issues were different from yours, so I can't comment specifically in this instant I'm sorry.
Would you like to talk about your journey and what bought you here? I really feel for you and your situation hun. It must be a torment. Are your family and friends involved in your recovery? If not, do you have resources nearby for support?
You're brave to reach out so well done. Please keep in contact ok, as we're here to support and encourage you through your trials.
30-11-2018 11:05 AM - edited 30-11-2018 11:11 AM
I have tried googling but I have found a fair few people with PEG tubes that got them because of chronic eating disorders but they were all in America or overseas and I couldnt find anything Australia specific. I am a 25 year old male.
I literally have a phobia of food, I am afraid of swallowing food and water, so I am chronically dehydrated and starving. This all stemmed from a time I threw up and it traumatised me in 2013 and now I am just so afraid I will throw up if I eat, my whole life revolves around the fear of throwing up and the fear of eating. I have spent so many times in hospital with so far no succesful treatments. It is soul crushing.
I am so severely agoraphobic that I rarely get to speak to my doctor, plus I live extremely rural in a town of 2000 people, my closest specialist is over 2 hours away and with my agoraphobia I am terrified to travel two hours.
I am honestly so close to giving up, I just want to stop worrying about food, I want to be able to just go about my life and stop stressing about eating and if i am eating enough. and being so far from help makes it even worse.
I had a doctor that specialised in atypical eating disorders and he brought up a PEG for me once but for the last 2 years I have been trying to contact him and it seems he either isnt working anymore or is on long service leave or something, his office wouldnt tell me they just said he wont be back any time soon. He was the only doctor I have come across that was really empathetic and seemed like he wanted to help and I feel hopeless now I cant get in contact with him.
30-11-2018 11:22 AM
Hi again @wedabest
I'm so sorry you've found yourself in this predicament. It seems life isn't getting any better and that's tragic.
Being in a rural setting isn't easy when it comes to psychiatric disorders. Mental health resources are low at the best of times let alone being isolated and in dire need of help.
It seems your best connections will happen over the phone. Many MH practitioners will give consultations this way. Some hospitals can organise patient transport for cases such as yours, though you may need to explore this option in your area.
When you say 'in hospital', are you referring to an eating disorder clinic or a psychiatric facility?
30-11-2018 11:24 AM
30-11-2018 11:29 AM
Thankyou for the reminder @Eucalypt. There is a fine line sometimes, so I'll be careful of words I use and advice. All information I provide is from my own experience/knowledge and not that of a professional. Just to be clear...
30-11-2018 11:30 AM
30-11-2018 11:36 AM
That's a shame @wedabest.
It seems you're in a tight spot indeed. I experienced agoraphobia after my breakdown; it can be devistating. Do you have close relationships to count on for support? You're still very young which also concerns me.
30-11-2018 11:49 AM - edited 30-11-2018 11:54 AM
Can I suggest contacting the Mental Health Crisis Hotline on 1800 011 511?
They have access to all sorts of resources in all areas and can assist you with your best options.
Also, web address for the centre for rural and remote mental health services is
The Butterfly Foundation is online as well as via Crisis phone line.
I hope these contacts can help.
30-11-2018 11:55 AM
I do have support, I have a girlfriend but I think she will leave me soon, she is younger than me so she is really struggling to deal with me not being able to leave the house, I strongly doubt we'll be together in 6 months, which i dont know what will happen if i lose her.
I have my mum too but she doesnt understand mental illness and says really mean things when i am panicking and she gets frustrated.
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