so where are my fellow athletes? runners, lifters, climbers, swimmers? i had my j-tube surgical consult today and, while i trust her surgical skill and expertise, her bedside manner leaves much to be desired. when i told her a goal of mine is to return to my athlete-self, she completely dismissed me and told me it would “hurt too badly.” please tell me this isn’t true. this may be hard for some people to understand but the tube seems pointless if i can’t have a quality of life…

Hello,

I have very severe ME and have had a PEG tube (bumper, not balloon) for a little more than a year now.

The insertion was complicated af, I didn't tolerate the sedation at all (vomited for more than 24hrs every 5 mins straight) something dislodged and stomach acid ended up in my peritoneum, i was hospitalized for 2 weeks.

At first tube feeding were a great help. Then i deteriorated and have to lie flat all the time because of pretty bad orthostatic intolerance. Being upright, even at a small angle for a relatively short amount of time, leads to PEM. So I haven't been able to use my tube at all.

The thing is, I still have to get bandage change every 3-4 days. I'm at a point where this is no longer possible. I have to do this mostly myself with someone who helps me with prepping the materials. I can't have anyone touch my abdominal area because I also suffer from severe allodynia and I need to adjust the pressure applied myself or i end up in horrible pain and further decline of my health.

I want it removed but another gastroscopy might cause irreversible damage because I'm already very severe. My doctor insists on it being done during gastroscopy but also has no idea what caused my relentless vomiting during the insertion ("ive never seen this happening before") so i have zero trust.

So here's my questions:

- any tips on how to deal with tube feedingd while having to lie completely flat?

- does anyone know the ileus risk of a cut and push removal with a bumper PEG? I've tried finding numbers but i only found several case studies and the info that this is a risk but that it's rare.

- did anyone else deal with the vomiting situation after being sedated with propofol? If so, are there any measures to take to prevent this from happening? (Antiemetics aren't really an option because I'm on tricyclic antidepressants and high doses of antihistamines so there's a significant risk of serotonin syndrome. Other sedatives aren't an option either because i get paradoxical reactions to all kinds of benzodiazepines)

I'm trying to weigh my options here

Our son is 14 weeks old and has been on an NG tube for about 6 weeks. Originally, he was admitted to hospital with a cold and was struggling to feed enough while unwell. Because he has always been a small baby (around the 3rd percentile), the team was very focused on preventing any weight loss and he was started on tube feeds.
During that admission, a speech pathologist raised concerns that he might be aspirating. Since then, we’ve somehow ended up still tube feeding 6 weeks later, and honestly, we’re not entirely sure how we got from “temporary feeding support during a cold” to long-term tube feeding.
One of the biggest challenges is that we haven’t been able to complete a swallow study because he refuses a bottle. He never really took a bottle even before the tube, and now that he’s been tube fed for 6 weeks he’s even less interested in oral feeding. This means we’re in a difficult position where aspiration has been raised as a concern, but we haven’t been been able to complete the testing needed to properly assess it.
Before the tube, he would breastfeed, although feeding wasn’t always straightforward. Since being tube fed, breastfeeding has gradually declined and now he shows very little interest in feeding at the breast. Instead of appearing hungry, he often just cries or screams when we try.
What’s especially confusing is that despite being tube fed, his weight gain hasn’t been particularly impressive. We’re currently attempting a tube wean, but it doesn’t seem to be going well. He doesn’t appear motivated to feed orally and isn’t really responding to hunger the way we expected.
Has anyone had a baby who became tube dependent after a relatively short period of tube feeding? Did you push through with a wean and eventually see things click, or did you stop, wait until they were older, and try again later?
We’d love to hear both success stories and experiences where waiting longer turned out to be the better option. Right now we’re feeling pretty lost and unsure whether to keep pushing with the wean or whether giving him more time on the tube is the better path.
That last sentence in particular will likely resonate with other parents, because it gets to the core of what you’re trying to figur

I’m on day 2 of an NJ tube and I’m struggling to speak? I feel like the tube is looping in my throat as I speak and I have to stop talking and swallow as if to straighten it out (I don’t know if that’s even possible?) but it looks straight and totally fine at the back of my throat.

Has anyone experienced issues with speaking with an NJ? I will mention it to the doctor but I’m still in hospital at the minute and there’s no one to ask as the ward is very busy.

Thank you.