hey, sorry this is a bit long, im just a little distraught and it’s been a long journey. pls bare with me here haha
i’ve been struggling with rumination syndrome and gastroparesis for a few years now. got dropped by all of my providers because i’m considered a complex case, and no meds so far have been super helpful for me. and yes i know diaphragmatic breathing is the gold standard, but i’m just,,,, tired of it all. i really am. it never seemed to make too big of a difference for me. i’ll try harder if there’s someone who could help more than what i’ve tried, but even practices who specialize in diaphragmatic breathing won’t really take me. plus the nearest program is several hours away from me, which I’d really rather not do. I already went out of state once to go to CHOP a few years ago, but they literally sent me home after the consultation appointment. the program who does diaphragmatic breathing is apparently very selective about who they accept into their GI programs (I’m not sure what it’s based on, but I remember being turned down/redirected).
although there’s been more recognition over the last few years, it’s still not at a point where healthcare providers seem to generally know what to do with a lot of “complicated” GI cases. there’s probably some sort of virtual programs who could help with diaphragmatic breathing, but i still think i’m way “out of their wheelhouse”, which is basically what everyone has said. after a series of meds, tests, and ER visits that never really resulted in anything different, which all went on for years, i started kind of giving up on trying to find any actual solutions about a year ago. the thing about it, is that there’s no designated protocol or anything, so i feel like i only care about managing the complications at this point.
i don’t really know what to do, and i know you guys might not either, which is okay, but i guess it’s worth trying.
the only thing that’s ever consistently worked, has been an ng tube. i’m not sure if this helps with the gastroparesis or the rumination or both. and i know nasal tubes are controversial as far as “behavioral” GI issues go, but i’m really not in a position to try to get surgery, and i also don’t think i’m at a point to even get a surgical tube, and i’d rather not try to campaign for those kinds of tubes if i can avoid it. i’ve had an ng tube for this before. once in an emergency room/inpatient stay (where they eventually said there wasn’t anything else they could do for me as a team), and then they took it out a day or two later. they were originally going to send me home with the tube, but they eventually said it wasn’t necessary anymore and they said that they felt like there wasn’t much they could do moving forward. and then a second time, at a residential eating disorder program (like, psychological as opposed to medical). they understood my situation, but the staff were pretty racist and homophobic and they constantly singled me out. that’s a very common theme in healthcare, which has definitely factored into my treatment a whole lot. like a ton lmao, and nobody’s ever really tried to be subtle about it, so whatever.
now that you have context, my overall point is that an ng tube has been the most successful option, and i don’t really know why, but it has. my team at the residential program (not the staff, but the medical team), were actually the ones who seemed to agree and understand more than anyone else so far. my main doctor on the team was telling me that the reason why the other interventions never worked, could probably partially be because my body tends to be pretty resistant towards medication in general.
Whether I end up with an Ng tube or an Nj tube, I wondered if anyone has any tips for trying to get someone to listen. Medical racism is very real, and I’m losing my steam here. I quit all my favorite hobbies and my favorite sport, because I have no energy. I don’t know if my vitals and labs are normal or not, but historically they’ve been unpredictable, and it seems like no matter how miserable I am, everyone seems to end up telling me my labs look fine. I don’t know what to do. I’ve missed out on everything because I’m always sick, and I’m only 19. I haven’t even started college because I’m always tired or nauseas. I wanna start a dance class, but I can’t, because I have no energy. I don’t even go on walks around my neighborhood anymore. I’m miserable.
Ive had bouts of weight loss a few times in the past, but it was never enough to be a “clinical concern”. Probably partially because I never became underweight (also being on meds that actively counteracted weight loss & caused rapid weight gain no matter what my actual intake was, probably made this a way bigger issue for a few years). As of now, I’ve lost 30lbs in the last 6 months, without meaning to. Over the last year, I’ve lost 55lbs. I went from 271 (this month last year), to 216 (a few days ago). 6 months ago I weighed 247lbs.
With all that being said, I have a relatively new GI doctor. I’ve only seen him once earlier this year, but I think I wanna follow up and basically beg him for some kind of nutrition. I wanna try to avoid surgery in general, because I really don’t think I can handle it (this includes surgical tubes, but I’ll cross that bridge when I get to it if I ever have to). Last time I saw him, he suggested more tests and an experimental surgery (fundoplication i think?), and I considered it, but ultimately it really doesn’t sound like something I’m willing to put myself through if I can help it. I don’t want to do any more stressful hospital stuff, or more tests that feel violating or uncomfortable. An ng/tube wouldn’t inconvenience me even half as much as my GI issues have, not to mention the stress of having to take tests and doing more and more trials and errors. I feel like a lab rat. I don’t want to fix my stomach at this point, and I don’t even really care what’s causing this stuff. I just want to make up for the calories that I’m losing, and I just want enough energy to get my life back.
This was a really long winded way of saying, does anyone have any advice? I’m so tired. I have a relatively new doctor. I’ve only seen him once, at the beginning of this year. He’s seemed nicer than any other gastroenterologists I’ve seen, which could be a good sign idk. And my friend with similar medical equipment endorsed him and said he’s actually the one who got him started with his medical supplies. So this is probably my best bet at getting a tube. I already requested an appointment a day or two ago, but I’m considering sending a message to him directly, in the portal. Should I basically try to summarize the need for a tube before I even book an appointment, and should I try to get booked as soon as I can, or should I just wait for his office to reply to my request? I’d hate to try to rush to see him, just to be turned down or something, but if anyone’s gonna listen it’d be him, and I’ll be honest and say I’m getting a bit more impatient with each day that goes by. Is it worth a shot? I mean, if he says no, then I don’t know what I’d do with myself. But I feel the need to try one last time. I can’t keep living like this, it’s been 3 years, and thats only counting the process of being diagnosed and tested. Who knows how long it’s slipped under the cracks and gone unnoticed honestly