emergency gastro admission advice (ASD)

[StrongLegs]

Hi,

The consultant that I have been seeing as an outpatient is trying to organise an emergency admission to hospital for me and I wondered if anybody could give me (soothing) advice about what to do/expect?

I'm ASD with a lot of sensory problems and anxiety. I have epic food intolerance problems and they have just finally reached the point where I can't eat enough to maintain my weight and have become "red flag for unexplained weightloss". I can only now eat meat and am battling to stay at BMI 16 while the consultant figures out what to do. I have lost about a stone in 3 weeks.

For years I have been housebound because I get ill from a lot of things like LED lights, and moisturiser on my skin, drinking tap water, eating basically anything, looking at stuff that moves too much.

Dh is wondering how on earth I will survive for long enough in a hopital environment for them to figure out what to do with me.

I wondered if anybody might know what I should say, what I should write down, and what I should take with me, to keep me alive until the staff can work out how to help me?

The trigger for the downturn was a course of antibiotics. Since I had them, every time I eat anything with even a minute amount of carbs in it, I really awful acid regurgitation. It's reduced with lansoprazole, but I can still only eat meat. Floconazole hasn't helped. Double dose of lansoprazole makes me all dizzy and reflux doesn't improve any more than with one dose.

I would be grateful for any advice, because I'm quite scared really, and have no idea about hospitals. Feel like I'm dying, though I appreciate that I may just have something that proper medics consider relatively minor.

Thanks!

Have you ever been tested for mast cell activation syndrome? It and EDS often go alongside ASD, and can cause severe gastro problems and weight loss. It's often mistaken for an eating disorder...

Every Trust will have something along the lines of 'learning disability and ASD team'- if you Google the hospital and that you should get a result hopefully. You can speak to that team before admission and also they have things they can put in place for while you are in hospital. Unfortunately the reality is that it's unlikely they will be able to fully eradicate everything you might struggle with, but they do make reasonable adjustments and you can liaise with them as needed before, during and after, your DH would be able to access them as well if it'd be useful.

Hi,

Thanks for posting. No I haven't been tested for that.

I always react to literally everything with nausea, though in the last year I've started getting swelling allergic reaction too (medicine and pollen).

Thanks!

Thank you very much, I will google their learning disability and ASD team.

If you can't eat any carbs then you're probably in ketosis, which would explain the weight loss.

I'm really sorry to hear how hard everything is. I'm also autistic. There are never easy answers to situations like this. If I'm trying to get through a hard time, I focus on sensory things that I particularly like, for example something I like the smell of can really make me happy. And also listening to audio books. Do you have any sensory experiences that you could enjoy and focus on? I also use eye masks to shut the world out when I need to.

Hi MyopicBunny,

Thank you very much, I'm really grateful for your sympathetic ear.

Yes, I thought I could take my laptop with headphones so I can watch soothing music videos on youtube. I know I can block smells by sticking tissues up my nose and no one will know if I am wearing a surgical mask to hide my nose. I also have music ear plugs that I can wear to keep noise out.

Good idea.

Another question to all readers:

The thing I am most afraid of is that I can only eat very specific things and once I am not in my own house I won't be able to get access to those things and I could lose weight very fast.

I suppose the important thing is that I explain that clearly though so they don't try to force me to eat stuff that is unsafe for me, and can instead put me on a drip or a nasogastric tube or something. Is that right?

I found a "hospital passport form" so I will fill that in.

I am not very good at explaining stuff and getting people to hear me and believe me, so thinking how to explain well is important.

It sounds ridiculous, because I was a biomedical research scientist for 17 years, and I'm now a published science writer. But when I talk to people to ask for medical help, everybody seems to take me for "worried well" and just tell me to chill and try to eat, and that is absolutely not what is going on here.

Thanks!

No one will force you to eat solid foods, if you aren't getting enough then yes they will more than likely look for other ways to get nutirution. On a gastro ward and with gastro HCPs this won't be unusual though, they are well versed in patients unable to eat much solid food (if anything).

Not sure if this is something you'd be comfortable with but do ask your DH to help write down your thoughts if easier? If you find it easier to say x, y or z would be challenging then maybe you can just tell him that and he can help you translate that best into the passport and perhaps a written document. Again it's not unusual for patients to struggle to advocate for themselves for various reasons once in hospital (and its nought to do with intelligence or lack of and its not ridiculous).

Thank you very much, that's a great relief to know. I have found the passport document and am writing it all down.

I've been seeing a psychologist for 8 years to learn how not to have panic attacks while describing physical symptoms and that is how I managed to explain the problem well enough to the consultant that he is now thinking about an emergency admission, so I'm getting quite good at that part.

Thanks for this good advice, it's great to know that they might be used to people like me.

Sunglasses for the fluorescent light? Baby wipes or something in case you can't shower? Blanket in case there's only one on the bed and you're cold? Money and card so you can buy something from the shop if there is one. Remember the charger for your electronic devices. Hope they can figure it out and you feel better soon 💐

Thank you very much I will add that.

I have done my hospital passport now and feel very much happier now that I have it all written down.

Thank you very much for all the good advice.

One of my (adult) children has similar gastro problems and a very restricted number of safe foods and had a BMI of 13 when they were admitted. Also very very anxious, ASD and on a heap of meds.
They did have an NG tube and while it took a while, it did help to rest their stomach and eventually was able to resume their safe foods. No one tried to force them to eat stuff they simply could not.

Hopefully you will have a similar experience. x

Is someone able to bring your safe foods in for you?

I dont have your degree of sensory issues but always struggle with hospital food and tend to eat very little, if anything, when I am in hospital. My DD very kindly brings me in food I can and do want to eat.

She also brings in water for me.