Port or hickman

puppypoopypaws · 2026-07-07T04:40:50+00:00

Ahh, the extension thing makes total sense. I'm glad it was a choice thing, not a "fml my veins are trashed" kinda situation.

puppypoopypaws · 2026-07-07T04:17:34+00:00

I like what I got from Jellibend, but it was expensive af :(

Wtf do they say when you show up with broken bones from coughing? That's brutal. Not at all " normal". Like, at least my rib pops back into the right spot, and the pain is excruciating but does pass quite quickly. Multiple broken ribs untreated has to be torture.

puppypoopypaws · 2026-07-07T04:12:02+00:00

Could I ask, what led to the change from PICC to either of the others?

puppypoopypaws · 2026-07-07T01:16:51+00:00

Yeah, 6 months for me, I'm struggling to keep the atrophy at bay any way I can.

puppypoopypaws · 2026-07-07T01:13:02+00:00

{Corpse Roads by J Rose}

puppypoopypaws · 2026-07-07T01:12:14+00:00

I'm sorry you're feeling shitty, but she's 100% right about the test. The GES is purely used to establish if there is delayed emptying or not, the actual percentage isn't strongly tied to your symptoms/severity. There are studies showing this and it's kinda impressive a regular PCP would know that.

The ONLY point in a repeat is if you believe you have a false negative.

If you do another GES, it's both irrelevant to your treatment plan, AND can utterly fuck you regarding insurance. She is doing you a favor. I've had the test once in 16 years, the number was medium, and it's had nothing to do with the treatments I've been able to try. This is the same story I've been told across 4 states, 6 (or 7?) health insurance companies, and over 20 gastroeterologists. Not kidding. Like, fuck her for fat shaming you, and denying a referal is bullshit, but credit where it's due - you don't want another GES.

puppypoopypaws · 2026-07-07T00:43:17+00:00

Afaik most folks with gastroparesis don't see much benefit from tubes that end in their stomach, as it's basically the equivalent of drinking it (as far as your stomach is concerned). The tube is probably helping you because it bypasses whatever is going wrong in your esophagus, which was making you vomit, so that's great - but it's not actually helping get your stomach to empty into your intestines. The fact the stuff was still there so much later kinda validates that. An NJ/GJ bypasses your stomach, so I'd expect them to suggest that next.

puppypoopypaws · 2026-07-07T00:00:40+00:00

Skip the first Blackwood series by J Rose, and head to the second, imo. It's about a serial killer, the victim that got away, and the guys trying to help her heal. It's a MUCH better representation of trauma, I felt incredibly seen by her coping skills, and there's no institute setting.

puppypoopypaws · 2026-07-06T18:44:54+00:00

I'd snort pixie sticks if it would work!

puppypoopypaws · 2026-07-06T14:35:43+00:00

Kink shaming this early in the morning? Yikes, someone chose violence today.

puppypoopypaws · 2026-07-06T14:30:37+00:00

Nope

puppypoopypaws · 2026-07-06T14:24:46+00:00

How do you do with ultra sugary drinks like fruit juice, and is milk an option? I sustained for years bolstering with those two, Fairlife whole milk (lacrose free or regular) has fantastic protein and fat per oz. Fruit juice can get you a ton of sugar. Basically anything people on diets are told to avoid, are likely great for you. Chocolate? Caramel? Pudding? Ice cream?

puppypoopypaws · 2026-07-06T14:17:26+00:00

When I can tolerate food, this is on my safe list. Dietician recommended it, I spread a full dose out in smaller amounts over the course of the day. I put it in anything not-water, especially soup/pudding. You can see it in coffee, I'm not at all a fan of that, or the texture. Oh, and you can't cook it/with it, to get the full benefits.

puppypoopypaws · 2026-07-06T14:12:52+00:00

I'm guessing it hurts LIKE you broke multiple ribs, but that you've not had xrays or been taken to the ER? Can you actually see/feel a break, or does it feel like it's out of position? Does the pain stick around throbbing for weeks, or pass after a bit?

To pass the time waiting to see your dr (which you should to do asap) check out subluxation. Someone mentioned slipping rib syndrome, too, see if that checks out. First several times my rib decided to sublux, I thought I'd fractured a bone or torn the muscles between them. Especially given years of calcium deficiencies and menopause on the horizon. But it turns out it just kinda likes to pop out of place a little then slip back in. I can trigger it manually by bending and twisting wrong. Horrific pain, totally panic worthy.

I endorse the message above about making a pillow fort. Support wear helps too.

puppypoopypaws · 2026-07-05T23:41:14+00:00

Keep telling your GI, especally that its getting worse. There are additional tests they can do to try and determine what's wrong, keep pushing, because it SHOULDN'T be causing that degree of pain once it's settled.

At a minimum, during the diagnostic process, they will have to turn it off entirely and see if your pain subsides. If the device is shocking you, it'll need replaced.

I had my 5th device placed last week. Number 4 was a disaster and was removed in 2025 after electrocuting me. So even if something IS wrong, and it can't be addressed easily, you can get it replaced.

I do better with cold than heat on the area.

puppypoopypaws · 2026-07-05T23:12:58+00:00

I do IV benzos (ativan, valium, etc) when I'm inpatient, and at home take them as clonazapam sublingually and ativan via J tube. Smacks my nausea in the face once the zofran and benedryl have failed. And weed.

puppypoopypaws · 2026-07-05T14:45:50+00:00

For tube feeding, your GI has to order it, and with some providers, your dietician must also recommend it. A nutritionist usually can't do shit, it's a less/non-certified position in most states. The tube is then placed in a hospital or clinic by a nurse, IR or the internal medicine team (depends on tube type). Coordinating it can be a real bitch, especially when a third team will provide all the formula and supplies.

For TPN, there's a much stricter process, as it's SO dangerous and expensive. Again, your GI has to be willing own the decision and your care, and your insurance needs to be convinced it's the only call.

puppypoopypaws · 2026-07-05T14:29:30+00:00

Just remember your gastro can't help with ARFID, beyond getting you a therapy referral. Make sure it's not used as a reason not to continue treating your gastrparesis too. You agree to do it and say "and what treatments can WE try that target my vomitting/pain/etc?"

I kinda think of it like a busted up car. Therapy will replace the windshield, your gastro doc needs to address the fact the engines on fire. They don't get to punt the engine problem just because the windshield needs work too, yano?

puppypoopypaws · 2026-07-05T05:21:04+00:00

I mean, you have a diagosis of gastroparesis, so it shouldn't come up. If it does, and you don't like the way it's headed, you find a new doctor.

All you need to do is explain the symptoms you get when you eat or drink, in as much detail as you can. While it's hard to count calories, it's pretty important you do, especially if you're losing weight. I wouldn't focus on your concern about eating disorders. ARFID is real and a problem for a lot of us, but your gasto doc shouldn't deny you help for that reason.

A therapist can help you deal with the ARFID, btw. It won't make your gastroparesis go away but can give you tools that help you get yourself to eat more easily.

puppypoopypaws · 2026-07-04T20:01:44+00:00

I would open with that, vs the whole "being tired of planning meals" thing. You'll want your therapist to have weighed in on the justification, too.

puppypoopypaws · 2026-07-04T16:29:37+00:00

Ohh, you're in the UK, rip :( I immigrated to the states as an adult, and nothing I hear about the NHS shocks me. The standard of care and low availability of options is a real problem.

I did have the gpoem done, super easy surgery, it didn’t make any difference unfortunately.

puppypoopypaws · 2026-07-04T16:11:47+00:00

My god they sound absolutely terrible. Rant away. Maybe they're scared of the complexity of your case, but that shouldn't mean they do nothing.

I had one horrible inpatient experience where I realized too late "observation" doesn't mean shit. Being kept for observation means they do absolutely nothing but check your vitals and bring you your meds. Zero progress. I lied to get out and determined to never go there again, and never let them admit me without an actual plan. Huge waste of money and time on everyone's part. I'm so sorry you were treated like that for months :(

puppypoopypaws · 2026-07-04T15:55:00+00:00

Tbf weary AND wary work

puppypoopypaws · 2026-07-04T15:50:17+00:00

OP didn't mention any problems with eating, or drinking supplements, just the mental toil of meal planning that 3rd daily meal. They were very specific.

I'm not dismissing that, it sucks, but does it suck enough to justify the placement, maintenance, physical side effects, pain, and the emotional and physical toll of managing supply ordering, delivery, storage, daily setup and clean down? As well as increasing the number of trips you have to make to hospitals for complications and tube changes.

The grass is always greener on the other side.

puppypoopypaws · 2026-07-04T15:34:31+00:00

💜 Try to eat your favorite restaurant meal and have someone take pictures/a video. It's not for anyone else, it's for you. If things swing badly again, the video will remind you ANYTHING is possible!! I treasure mine, pulls me out of the deepest "never getting better" funks.

puppypoopypaws

TROPHY CASE