Best option for hEDS and potential MALS and SMA?
So my dietician is really concerned about my weight and inability to eat enough food or drink enough meal replacement. She thinks it is time (and has been for awhile) for a feeding tube. What feeding tubes are safest for hEDS and suspected MALS and SMA? My endometriosis also makes me throw up a good bit. My research is saying NJ? How uncomfortable are there really?
A nerve block helped a little with MALS for a few days, and they’re doing a nerve destruction in 3 weeks. If that doesn’t help enough they may do more SMA imaging. Ultrasound was positive for both but CT-A scan was negative for both.
I’ve never been able to maintain or gain weight my whole life and have been underweight for 2 years. I’ve gone sub 90 twice (I’m 5’5 so that’s really bad) in the past 2 years and am getting close to that again. One allergic reaction or flare up can make me loose a lot of weight fast, and it takes months to regain just 5 or 10 pounds. I’m feeling scared and emotional to get a feeding tube but the damage happening to my body isn’t okay. Some people in my life are saying I don’t need it or that it’s not fixing the root cause, so I guess we’ll see what my GI and the rest of my care team says.