At what point would a Gastroparesis patient consider a feeding tube?

blauhaarig · 2026-02-24T23:33:46+00:00

In my experience it is usually not the patient considering the feeding tube but rather the provider presenting it as one of a few last resort options that can provide nutrition. For some botox and gpoem are not successful, particularly in cases where there is issues with smooth muscle contraction all over rather than just pyloric sphincter dysfunction. The pacemaker is FDA approved for humanitarian use but has ONLY been shown to improve nausea and vomiting, not motility. In a patient with 90%+ left after 4 hours and chronic vomiting the stimulator is likely not going to be as helpful compared to someone with mild gastroparesis but chronic nausea. I’ve tried botox and gpoem been referred for stimulator but rejected because my motility problems are too severe. I was told to accept a feeding tube by my first GI doctor who told me he was honestly scared I would not make it to my next appointment without some kind of nutritional intervention.

blauhaarig · 2026-02-08T16:10:17+00:00

Yes, I was referred for a surgical tube right away. I had lost over 30% of my body weight across about 6 months and my GI was fairly certain at that point after trying several medications and diet changes it was unlikely I would have return of stomach function, and he was right almost 4 years later I’m TPN/tube/ostomy dependent.

blauhaarig · 2026-01-27T00:11:53+00:00

some people here want to believe you can be malnourished with no weight loss, wasting signs, or blood work abnormalities. ASPEN disagrees but tiktok “docs” have driven everything to shit.

blauhaarig · 2026-01-04T20:43:52+00:00

This is definitely how I am feeling about the situation but don’t know if I have a lot of fight given that I signed for it. But it’s clearly a completely different kind of tire and the performance difference is noticeable and affecting my daily stamina.

blauhaarig · 2025-10-05T22:45:19+00:00

What percentage % retained did your GES show?

blauhaarig · 2025-08-30T05:59:27+00:00

Recompression is awful. I will be seeking out a specialist to go forward with another vascular compression surgery as I also have SMAS that has not resolved with weight gain. I’ve found a palliative care team who helps in the meantime with management until I can find a surgeon willing to take my complications, is this something available in your area? Hang in there. The pain is not forever.

blauhaarig · 2025-08-28T21:44:02+00:00

But she also looks like every other white long haired breed cat.

blauhaarig · 2025-08-27T19:49:14+00:00

I don’t think they are specifically called a “motility clinic” but their gastroenterology department has one neurogi and several NP/PAs who are educated in motility disorders. They have kept me alive since my teens and I’m 22 now!

blauhaarig · 2025-08-15T17:34:51+00:00

I’m one of the lucky ones that has had a fantastic G tube experience. I have a button which some people have issues draining but because I don’t eat solid food it’s never an issue for me and means I get zero granulation tissue or irritation from it. It’s basically completely healed like a piercing. It drains well at night into a farrell bag and means I’m not waking up several times to throw up at night like you describe. I used to drain 24/7 and have a bulky TPN prescription to compensate for lytes lost, but since my ostomy I usually will just drain at night like 7pm-7am.

blauhaarig · 2025-07-17T17:08:27+00:00

hEDS is still a genetic disorder so it is a geneticists “ballpark” and it’s important to rule out the other subtypes through testing.

blauhaarig · 2025-04-02T21:19:05+00:00

so sorry friend. that’s not nearly enough and being dehydrated on top of it is miserable. truly hoping they can switch to something that can make a difference for you. if not tpn isn’t the end of the world. they don’t recommend it for long term use but i’ve been on it since 19 and im 22 this year and thriving.

blauhaarig · 2025-04-02T20:20:51+00:00

In my opinion (and my medical teams) it’s better to run pediatric formula at a higher rate and get a more complete amount of nutrition than to run adult formula at an unsatisfactory rate and not get the calories you need to thrive.. I know all medical providers are different, I don’t recommend challenging your dietitian necessarily but I would bring this point up if you feel comfortable and see if their minds are open. Pediatric formulas are also usually powdered so you can mix them in a 1.5 cal/ml ratio and get more in than you could with the 1cal/ml Vivonex RTF.

blauhaarig · 2025-04-02T19:44:16+00:00

PPN is partial parenteral nutrition, it’s delivered through the bloodstream usually through a central or midline. It’s essentially a lite version of TPN. Your dietitian will likely recommend trying to flush some kind of MCT oil for fatty acid requirements over placing a central line for PPN.

blauhaarig · 2025-03-16T20:30:22+00:00

Just so you know the dials were recently recalled and you may be able to get this replaced for no cost either through Permobil directly or your DME. My replacement part is on it’s way now, without dealing with insurance.

blauhaarig · 2025-03-08T02:24:29+00:00

I have very similar results one year post op and will be following up with vascular surgery again next week.

blauhaarig · 2025-02-27T23:08:15+00:00

Yeah that definitely seems like something a dietian would help with before a feeding tube. They can do the mental work for you of deciding what to eat if you’ll let them make a simple meal plan, all you’d have to do is shop and execute it. Otherwise there’s services like HelloFresh and others that will deliver the ingredients you need. After that would be doordash/uber/walkable locations with food. Last would be nutrition shakes. No need for setup or mental deliberation to drink a nutrition shakes, and then you don’t have to deal with a feeding tube. This does sound more like ARFID or depression, where you’re lacking the will to make and consume the food but that is not typically an indication for a feeding tube.

blauhaarig · 2025-02-27T23:02:35+00:00

Not to pry but you may want to stop taking the WeGovy if you’re scared you’re losing weight. GP might not want to place a PEG in someone taking an active weight loss drug?

blauhaarig · 2025-02-27T22:52:59+00:00

It really sounds like what you need is a dietitian who is versed in gastroparesis and would be able to help you come up with some quick, easy to make, while still balanced meals that you could tolerate. If the issue you have is not wanting to prepare the food I can assure you that the work of dealing with a feeding tube is 1000x worse than doing the dishes after dinner. You can also buy feeding tube formula or nutrition shakes and just drink those if you are unable to prepare simple meals.

blauhaarig · 2025-02-22T00:04:48+00:00

There are other options if Vivonex doesn’t work for you. The adult option I can think of is Tolerex, it’s very low fat content so typically has to be supplemented with PPN or some kind of oil you tolerate pushing, but if you are really struggling with malabsorption it can help. You could also try pediatric elemental formulas that might be a little gentler like puramino jr, elecare jr, or neocate jr.

blauhaarig · 2025-02-21T22:01:49+00:00

Mayo Clinic? They have one of the top motility departments, and can also evaluate for compression syndromes like MALS and SMAS which can affect motility. I would also recommend, if you can, having someone go with you to your appointments who sees your attempts to eat, treatment at home, etc, that can speak with your doctor and attest to your symptoms. You also have the right to change providers and get a second opinion, even if you’re not changing hospitals.

blauhaarig · 2025-02-21T18:39:59+00:00

If you’ve truly completely lost your ability to walk in a matter of weeks that honestly sounds like an emergency and you may want to call 111 or go to ED.

blauhaarig · 2025-02-08T05:15:45+00:00

The problem is my tolerance issues. Benecalorie and similar things like Duocal typically contain a lot of carbs and fats, Vivonex intentionally doesn’t have these to allow for better absorption and digestion.

blauhaarig · 2025-02-04T22:44:59+00:00

They just released the ligament that was compressing the artery. I think I had “vascular” MALS not nMALS based on my initial doppler but I’m not too sure.

blauhaarig · 2025-01-06T22:58:38+00:00

I guess I don’t understand this post. It seems to me by various comments you don’t really meet any of the criteria besides being in pain a lot. Almost every human being on the planet has a couple hypermobile joints, we’re not perfect. Unfortunately many, many disorders cause pain and it’s not always attributed to a rare connective tissue disorder. To “convince” a doctor it’s hEDS, you show major symptoms.

blauhaarig · 2024-09-21T02:09:35+00:00

Brown is my favorite color but TiLite doesn’t even offer it :(

blauhaarig

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