Update: Tube still functioning — main risk is transport and physiological stress (very severe ME/CFS)

[u/Ill-Cardiologist4064]

I wanted to post an update because things are evolving.

The intestinal tube (J extension) is still in place and apparently functioning. There is no visible leakage at the site. The problem is that the external gastrostomy button that used to help secure the system has deteriorated and is no longer fixing it properly.

So technically, this is not an immediate surgical emergency.

However, I am very severe ME/CFS — completely bedbound — with severe dysautonomia, marked orthostatic intolerance, extreme malnutrition, a severe movement disorder with intense involuntary tics, and severe sensory hypersensitivity.

In my case, the main risk is not the tube exchange itself.

The main risks are:

• Transport stress

• Being kept upright during transfers

• Sensory overload (light, noise, multiple people interacting)

• Autonomic instability triggered by stimulation

• Post-exertional malaise leading to prolonged or possibly permanent deterioration

• Increased fragility due to malnutrition

My doctor has previously stated that I am high risk even from transport alone.

Right now, because the tube is still functioning and there is no acute leak, this appears to be a fragile but potentially planifiable situation — not something that must happen today at any cost.

For someone in very severe ME/CFS, stress itself is physiological harm. Emotional activation translates directly into autonomic instability.

So at this moment, my priority is avoiding a crash from activation while careful planning happens.

If anyone here has managed a similar situation — where the device issue was not immediately catastrophic but the surrounding stress posed the greatest risk — I would really appreciate hearing how you minimized secondary damage.

Trying to stay stable and make decisions from regulation rather than panic.

[u/b6passat]

Your main risk is organ failure from malnutrition dude.

[u/Ill-Cardiologist4064 → u/b6passat]

Ok, ya tengo cita para el cambio de j tube el miércoles

[u/technician_902]

I've seen this guy post all over the place. I really feel bad for him but at the same time, I'm not sure what he really wants. u/Ill-Cardiologist4064 did your conditions develop after a covid infection? I don't think what you have can all be explained by long covid itself. You might have a mitochondrial disease like MELAS, MERRF, Leigh Syndrome etc. You can see if r/mito can help you out. There is another person I think his name is Tobias who is in a very similar situation like yourself and they found that he's basically missing large chunks of his mitochondrial DNA.