TW ED..Barely any support from ED services because my behaviours are closer link to OCD

MeganAlmighty · 30-08-2017, 03:31 AM

Hiya Guys

I'm reasonably new to this area after being discharged from a 4 1/2 year inpatient stay and I've had all the hassle of meeting new drs and making sure they've got all the right notes, etc.

I've done amazingly well on the self harm side of things and I'm learning positives from challenges that I face each day.

However, my purging has continued and is actually quite severe at the moment which is making me upset because it's ruining the life I'm trying so hard to make for myself.

I had to have an assessment with the local eating disorders team after a general hospital admission and my potassium levels were rediculously low.

I had to go through my WHOOOOLE life story with them and explain why I purge so much and then the doctor left the room and went to discuss me with her team.

And here's what they came up with:

Because my purging is linked to childhood trauma and seems to have developed into a compulsion following intrusive thoughts they "can't really do anything for me" except have regular blood tests and weigh-ins and "I'll go find someone to write you up a prescription for some KLyte".

Well, ok, I understand. So it's not an eating disorder. It's a form of obsessive compulsive disorder. But can't anyone help? Can't anyone explain and help me to understand it?
I've been diagnosed as having bulimia for 11 years and now I don't have bulimia?
That's great but what's this then? What is happening to me?

Is it just me or should they refer me to someone who can help me make sense of this??
I don't even know what I'd type in a search engine

I'm so confuddled.
(and dizzy)

Can anyone help/advise/support in any way, please?

Meg

Entropy · 30-08-2017, 11:51 AM

Hi, that sounds pretty frustrating and confusing for you. I think that if purging is a compulsion for you related to OCD then you should be able to access some kind of OCD specific help given that it has had a significant impact on your life for a long period of time. Are you able to speak to your care team and explain that you really want to tackle the purging/ED side of things and ask for how they can help? Perhaps they are right that the ED team isn't the right kind of help for you but I hope they can refer you to someone who will be able to help.

Shadow time · 02-09-2017, 08:22 PM

Are they referring you back to the community mental health team? You maybe ask them if anyone specialises in OCD. If you're purging though you should be having bloods done once a month - you can request that you get these done at your doctors.

I suspect you saw a psychiatrist at the eating disorder treatment team so that they could assess what service they can (if any) offer. It does suck - but it doesn't mean you fall off the radar - they should refer you back to the community mental health team and if not you could ask your doctor to?

MeganAlmighty · 03-09-2017, 11:10 AM

Thanks for your replies, guys. They're all very on point.

I think at the time of posting I was quite overwhelmed.

I've been discharged from ED services after 11 years, just like that.

I have my mental health team. My CPN is brilliant and I see her often. She's brought forward my review with the consultant psychiatrist for 27th or 28th (can't remember without looking) of this month to figure out a plan of action.

She's making sure my physical health is being closely monitored (I'm feeling quite a lot better with the K-Lyte, btw) and she thinks that specific therapy to challenge compulsive behaviour would be a good move as I've already had 4 years of specific trauma therapy (I have DID but we're now pretty much fully integrated) so going back on that wouldn't be beneficial.

Anyway, I'm seeing things a little clearer and am feeling hopeful and I'm getting a list of questions together to go to the review with so that I'm prepared.

Thanks again

Meg

Shadow time · 03-09-2017, 11:33 AM

I think ED services have had cuts in funding (again) recently. And I know I've been told they may discharge me if they feel I'm not in a place to work with them (if you're BMI gets too low you can be hard to treat because essentially you can't think properly).

Seeing the consultant psychiatrist and being prepared with questions is great. Even if they can't answer them on the spot - take them in written down. It could be that they want to tackle other issues you may have and feel that those need to be addressed before they can review your purging/eating again? I'm in ED treatment (outpatient) but my therapist is concerned because of how independent I am and living alone etc how I will actually manage to change my behaviours through therapy alone. I think it's definitely okay to say "okay, they've discharged me... but what does this actually mean in relation to the support I will get? I've been thinking maybe I want to look at this (e.g. OCD)... because I think it help with this..."

Just my thoughts anyway. I know it varies from NHS trust to trust so it's worth finding out as much as you can about what is available to you.