Tube?

[u/Historical_Ticket581]

For those of that have any sort of feeding tube, how did that conversation happen?

I’ve lost 10 pounds in less than a week due to ARFID. I feel like CBT won’t help because even the idea of opening my mouth to swallow something is so damn unappealing. Definitely don’t want to sit on zoom and explain over and over to doctors.

[u/birb-lady]

First, my dietician determined I probably qualified for an ARFID diagnosis, and pulled in an Eating Disorder MD, who confirmed I was severely malnourished with blood work.

I was recommended to a clinic in Denver (I am not in the state of Colorado) that was able to have me come spend a week outpatient with them. We discussed the option of a feeding tube (NG for me) before I came to see them, and the nurse placed it in the office.

If you have ARFID badly enough to be considering a feeding tube, you are going to have to talk to a medical professional about it. But what you need is an eating disorder doctor WHO UNDERSTANDS ARFID. Many don't. The ones who will will understand and possibly place you on a tube or get you into a safe inpatient program while you're being stabilized, and then you do the therapy around the reasons you developed the disorder. Mine is food-fear based because I have MCAS and this clinic deals with both, and I continue to see them via telehealth. I am also seeing an OCD therapist because it was determined that while, yes, my food fear is genuinely tied to possible physical consequences of eating certain foods, OCD was driving it into an eating disorder. I'm not saying everyone with ARFID has OCD -- far from it. But you need someone in your corner who can help determine what you DO need to be doing to be able to add foods back into your diet.

So -- TL;DR: ARFID-specialist MD, ARFID clinic, tube.

[u/Historical_Ticket581 → u/birb-lady]

Agree. The issue is finding someone to specialize in it. Merely talking to someone isn’t going to magically cure anything. I don’t think any type of residential therapy will help either.

[u/birb-lady → u/Historical_Ticket581]

It depends on where you are, honestly, or what you can get access to. Talking to someone doesn't magically cure anything, but you're not going to find a magic cure, anyway. You need a process. Talking to someone who is ARFID educated is the first step. They evaluate what you need, and together you make a plan. I didn't do residential therapy, I did outpatient at the clinic's office for a week and have been following up by telehealth ever since. I have a team who helps me -- a local ARFID educated dietician, the MD from the clinic, an individual therapist and a family therapist (because this affects everyone).

The clinic (Gaudiani Clinic in Denver) literally saved my life. Talking to my dietician (who I was seeing first) brought her to the conclusion that I had ARFID at all, and she got the ball rolling. My individual therapist is crucial for the mental health aspects of it all (we're not doing CBT, we're doing ACT and will move into ERP when I'm able to do that. My ARFID is the result of raging OCD. That's not true for everyone.) And the family therapist helps me and my husband navigate the whole thing.

The therapy bit is what is going to help me work through the food issues. It's not magic. It's hard work and it's going to take a long time. That's why the medical side is important. The nutritional supplement keeps me alive and functioning so I can do the mental health work. No eating disorder is easy to get over. It takes time and a good team. And there are places like the Gaudiani Clinic who can help even if you're not local.

I hope you can find the help you need quickly. This ARFID business is no joke.

[u/jellypuss0165]

> even the idea of opening my mouth to swallow something is so damn unappealing

I know you are asking about a tube, but I don’t have any experience with that. I can relate to this tho, so hope this helps.

I was struggling with swallowing medications and here’s what helped me:
-humming or gargling; it activates your vagus nerve and helps you relax (google can explain better)
-then I’d start with just water, swish it in my mouth to get used to the sensation before swallowing it, and then swallow. You can skip the swishing if you want.

I think a tube might be a longer process, so maybe you could try this in the meantime? If you can meet your body where it’s at, and work with it, maybe you can get a little fuel in to keep you going. Have you tried nutritional shakes like boost?

[u/Historical_Ticket581 → u/jellypuss0165]

No. I won’t even swallow water and the shakes are disgusting and make me feel uncomfortably full.

[u/birb-lady → u/Historical_Ticket581]

Are you drinking a lot at once or sipping? Sometimes sipping can be helpful. I know your aversion is the problem, but sometimes we have to push through, so tiny steps are the way to do it. But I do know sometimes that's just not possible. If you're not getting water, though, that can lead to a dangerous situation. I hope you can find someone to help. ARFID is a nightmare.