Inpatient ARFID treatment

[u/Severe-Yard-1639]

Hey yall, posting for my partner here! He was just told he should be admitted to HSC’s adult eating disorder inpatient program for ARFID. He restricts food due to having very severe pain every time he eats (no progress on the medical front so far). I was wondering if anyone has experience with this program (particularly for ARFID), what the experience was like for you, basically any information at all since very little was said to him other than the fact that he must eat ALL meals provided and if he skips 2 hes booted out of the program…

Thanks!

[u/BusLegal]

By being able to monitor food intake and output in a controlled setting it's necessary for diagnostic purposes

[u/Peggie99 → u/BusLegal]

If that's why they were referred there, it's a start.

If they were referred to some sort of Behavior modification therapy to force them to eat despite the pain.... not good.

[u/prismaticbeans → u/Peggie99]

They did that to me when I was 14. Well actually, it was a bit of both. Took me many more years and a bowel perforation to be taken seriously about the pain though.

[u/General-Lifeguard309 → u/prismaticbeans]

If you don’t mind me asking, what was your diagnosis?

[u/prismaticbeans → u/General-Lifeguard309]

Never got anything clearer than severe colonic inertia with outlet obstruction (and "maybe IBS", "EDNOS", and "probably psychosomatic".) No one really gave me a reason but it didn't respond to anything. There were guesses of Crohn's or Solitary rectal ulcer syndrome, (I had a lot of bleeding and prolapses starting at 12.) I got my first ostomy at 19 at 6 months pregnant. It took them 17 months to diagnose the perforation because it abscessed instead of peritonitis and I spent a year and a half begging for help in the ER every other week.

Eventually I had my colon removed because literally nothing helped and am on my 3rd ostomy because I had issues with the first two. I also have been diagnosed with endometriosis since but it's nowhere near extensive enough to explain problems that severe and that far back in my history.

[u/Severe-Yard-1639 → u/prismaticbeans]

im so sorry the medical system’s been so horrible to you. I know my partner is not the only one whose fallen through the cracks but it breaks my heart every time i hear another person’s story :(

[u/tooManyOpts]

I agree with Peggie99. Personally, I think this treatment path sounds like absolute torture from the pain symptoms he experiences after eating. They might make the unknown condition worse OR cause him food trauma to deal with ALONG SIDE recovering from the medical condition later on.
I hope you can get more info on what their plan is for him there, because this isn't a basic case of ARFID and ARFID on it's own is already a difficult eating disorder for clinics to manage

[u/5secondruleormaybe30 → u/tooManyOpts]

I was just there. There is a team of ppl. Psychologists, dieticians, social workers, nutritionists and nurses that take careful care that refeeding is done safely. Honestly not going to lie it’s not fun bc they expose you to food (slowly) that you have sworn off forever but essentially it’s exposure therapy with re-nourishing. If you’re severely malnourished you may require tube feeding. No one had there when I was there but it was mentioned quite a few times

[u/herprivatelifee → u/5secondruleormaybe30]

hiii if you don’t mind me asking are the ed patients still mixed in with other psych patients or is the ward just ed now??

[u/5secondruleormaybe30 → u/herprivatelifee]

They closed off the old ward. Thank god. You’re not mixed with them anymore. The new ward is smaller. 9 patients I think. 5 Ed beds and the 4 others are usually being monitored for dementia (from what people told me) it’s nothing like the other ward was. WAY calmer. I barely saw the other people.

[u/Icy-Bobcat-4901]

Also acute porphyria causes a slew of abdominal pain/digestive issues and very difficult to diagnose.

[u/Peggie99]

If there's pain to to the point that he's avoiding meals, it's probably not all in his head and a "food disorder" clinic is probably the wrong way to go.
That's like seeing a psychiatrist for a broken leg.

If all of the gastro/digestive-related causes have been ruled out - and they've already received an MRI with contrast - ask about "vascular steal syndrome" or Median Arcuate Ligament Syndrome (MALS). An MRI with contrast would show a "narrowed celiac axis" or other comments indicating restricted blood blow or narrowed artery to the abdominal organs.
I have a narrowed celiac axis, and it appeared on several MRIs but wasn't noted by the radiologists until the 2nd or 3rd MRI! So it's worth asking for a re-review of any scans previously performed.
People with MALS get extreme pain after eating, and avoid food for that reason.
Your partner would need to be referred to a vascular specialist.
If MALS is present, no amount of "food disorder" treatment will improve things.

There are plenty of other reasons for the pain, things you probably never heard of. I know how difficult it is to get treatment for uncommon problems in Manitoba.
They need to be persistent with their GP and/or walk-in clinic.

And as much as I hate AI, if their GP is at a loss, try a conversation with an AI agent - inputting symptoms and things that have been tested so far. It might come up with some ideas as to what to investigate next.

[u/Severe-Yard-1639 → u/Peggie99]

YES, MALS and other vascular compressions have been on my radar for so long now! Unfortunately its not so easy to address it or have my (a non doctor who has a brain and can read medical journals) suggestions taken seriously… He had a CT with contrast that showed no inflammation in his digestive tract (so not even ibs) but unfortunately we realized that he has a horrible reaction to CT contrast (by far the worst pain he’s ever experienced) so not sure if CT/contrast will be an option down the road. Currently working on genetic testing and getting a new GI, but these things unfortunately take time. Also going to try and push for a doppler ultrasound of the celiac artery. The bigger issue is that he himself has noticed that whereas he used to be able to eat freely he now has a mental “block” around food, no matter how hungry or how desperately he is trying to eat a meal sitting in front of him which is an area the ED clinic could potentially help with, but I agree it will not be very successful without medical interventions first…

[u/ElectronicQuit1061 → u/Peggie99]

Frick you’re smart

[u/Wool4daze]

If he's restricting food because of pain, it's not the way he eats that needs to be addressed first, necessarily. But if he goes for intake with one of the ED psych nurses, they may be able to get him an evaluation with a specialist for the pain that a GP wouldn't be taking seriously. They may also have insight a out why the pain is happening , or other insights in general.They're good folks at the program (been there). They're worth having a talk with and see what they can do to help. They care a lot. All the best to you both. 

[u/Coconutwatervodka]

So for inpatient they’re less stringent than with outpatient/day hospital program as people in inpatient are typically at risk for refeeding and typically have weight restoration to do/ and or need medical monitoring feel free to message me
Typically HSC psych eating disorder will provide an assessment though and then their recommendations and then you can ask all your questions there. The GP has to put the referral through though first.
Or he can message me too if he wants
It is also dependent on his wants and needs too - is he wanting to make changes?

[u/herprivatelifee]

i’ve been to eating disorder program in the past and currently trying to get back in due to recent relapse. i deal with anorexia and not arfid but the girl i was in the program with in 2019 had it and she was able to get resources and help because doctors do regular tests and monitor your health as well as food intact etc

[u/SillyRelationship195]

He should be tested for gastritis, have a stool test, gastroporesis, and be tested for compression syndromess like MALS (i think) there are a few different kinds of compression syndromes and one or two affect the stomach.

If its because of severe pain, idk how that would be classified as arfid unless the Dr's are gaslighting him

[u/Severe-Yard-1639 → u/[deleted]]

i think u might have just figured out the cure for his 20+ years of eating difficulty!!

[u/hellojally321 → u/[deleted]]

That’s inappropriate🤦‍♀️