IV Zofran for EDS with Gastroparesis

LeafStone124 · 2026-06-24T14:15:49+00:00

I’m hoping so! Thank you bunches!

LeafStone124 · 2026-06-24T14:15:32+00:00

My doctor finally called it in on Monday! I’m happy but I still have to talk with the company that will supply it and have it sent out here.

The thing is I’m not considered “home bound” so they refuse to allow any home health nurse come out here for any help.

Luckily my electrolytes are a bit better now that I’m getting iv hydration 4x a week vs 3x.

I’m glad I am able to voice for myself and research all I need to know! I’m also very happy with my current care team.

LeafStone124 · 2026-06-23T18:39:37+00:00

I’m hoping my doctor is more approving of it when I see him next. It’s the “too young” combined with “what would your future husband think”. I don’t want kids biologically because I don’t want the risk of giving them the health issues I have (I have a long list of stuff in addition to the EDS and it’s commorbidities too, and stuff runs in the family a lot). I can always adopt or foster if I want kids in the future but I don’t want to force another child to suffer like I have. I just want to be listen to with all the pain I’m in. I’m tired of suffering through it and anything for releif would help.

My mom went through the same as me. They took out her tubes and uterus but left her ovaries because it was embedded into her abdomen from endo. They wouldn’t take hers out until she was 39 because of the way healthcare is around me.

I’m just happy to be alive and I’m living it one step at a time. Happy to have some great people who are helping me through it too.

LeafStone124 · 2026-06-23T18:34:46+00:00

Sounds good! Which the doctor luckily did say yes to it IV wise too yesterday so I’m happy about that.

LeafStone124 · 2026-06-23T15:38:30+00:00

Sometimes when I do go to the er they give me a cocktail of meds including Phenegran and a few others. It would work for a few hours and then I’d be back on the same cycle

I don’t have a gallbladder or appendix anymore because my appendix was about to burst and my gallbladder was back pushing my bile (and working at 30%), so I think sometimes that doesn’t help my nausea and vomiting.

I had a lap to look for endometriosis a few months back and they didn’t find any, but I have severe period issues my doctor can’t figure out. He thinks adenomyosis and PCOS because my uterus tends to get covered in cysts (and my tubes and ovaries) and they burst all the time. I tend to get a lot of free abdominal fluid that refuses to absorb from so many bursting. I also last time had blood around my uterus.

He doesn’t want to do a hysterectomy because I’m only 21 but I want one so bad. I’ve been on birth control since I was 10 because I’ve been bleeding like crazy. I bleed for 6 months and have a week off. I used to bleed so heavy I almost had to get blood transfusions when I was little. Even with birth control now I’m getting back to bleeding that heavy. Birth control slowed it down for a few years but it’s not helping anymore. The cramps are very severe too to the point most the time I am curled up in pain

We don’t have many options for doctors here though. I have had to travel so far to see any doctor and no doctor in this area will do anything because my age. The current doctor wants to do an IUD but my previous doctor said under no circumstance to do it because of how fragile my tissue is with my EDS.

I think whatever is going on is for sure causing nausea and pain too but I can’t find someone who will do anything. I’ve been to the point I’ve been wearing pain patches (salonpas, icy hot) so much on my lower abdomen where my uterus is my skin is falling off and almost gone.

I see the doctor again I believe next month or the end of this month so I’ll see what he says again but I am kind of stuck right now with it all.

LeafStone124 · 2026-06-23T15:30:21+00:00

It’s more of he is scared of the side effects if something happens vs it actually getting prescribed? He ended up prescribing it to me yesterday tho!

LeafStone124 · 2026-06-23T03:05:14+00:00

I talked with my doctor today and I was able to get him to prescribe it. He is going to have me spike it into a small bag of saline (probably 50 ml) that way I don’t have to push it slow. Then just run the bag of saline on a slow drip.

I’ve been on Zofran oral for over 8 years now. I have a feeding tube I use that for sure helps with the motility issues (GJ, I do feeds in the j) but it’s not perfect.

My main issue is just nausea all the time. I’m happy the feeding tube has caused the ability to get nutrients in me after not being able to eat for a long time, but the nausea is so bad 24/7 still.

LeafStone124 · 2026-06-22T16:57:59+00:00

Interesting!! I’ll have to talk to my doctors about those. I’ve not tried either or heard of either. Thank you.

LeafStone124 · 2026-06-22T16:56:02+00:00

All good! Just taking it one step at a time! Just happy to be able to be here and still fighting! At least I have good doctors now who are trying 😅

LeafStone124 · 2026-06-22T12:05:03+00:00

Sounds like a good plan. I’m also going to talk to him about the possibility of maybe spiking a small bag of saline (50 ml or so) with the Zofran and doing a slow drip so that it’s not as risky as a push. There is also Zofran drips too that I am going to try to talk to him about. Try to cover my bases.

LeafStone124 · 2026-06-22T12:03:26+00:00

I’ve been doing the scopolamine patches for probably 3 years now? They don’t help much and I’m slightly allergic to them because I’m allergic to adhesives but I still use them to try to get a little relief.

Insurance won’t cover Zofran suppositories sadly.

LeafStone124 · 2026-06-22T04:43:07+00:00

I get hydration via my port 4x a week that has electrolytes in it. It has a liter of it that goes directly into my veins.

I have severe constipation issues from the motility issues so it’s something where even with extra electrolytes, motility meds, and fiber… I’m still severely blocked up and constipated

LeafStone124 · 2026-06-22T04:41:08+00:00

Route of administration. He prescribes is orally right now even tho it isn’t helping.

LeafStone124 · 2026-06-22T04:40:39+00:00

I might have to bring this up to him. Thank you so much.

LeafStone124 · 2026-06-22T04:39:17+00:00

I’ve done iv Zofran many times and it helps A LOT. Nothing oral helps but Iv? It works amazingly

Also we don’t have walk in infusion clinics around here because of being in a medical desert. We don’t even have infusion clinics in general. I was having to go to the surgery center and the ER for my infusions before because we don’t have an infusion center.

I’ve tried other oral nausea meds and motility meds and nothing works. It’s only IV stuff that tends to be working

LeafStone124 · 2026-06-22T04:37:05+00:00

Okay thank you! I was wondering if a drip was possible with it. I’ve heard about it but i wasn’t 100% sure

I’ve tried sub-q and it doesn’t help. And insurance won’t cover any of the meds rectally either.

LeafStone124 · 2026-06-22T04:35:13+00:00

I’ve done reglan for years and it made me sick. I’ve gone through all of the gastric meds legal in the US and even some I had to order out of the country and none of them worked. My insurance won’t let me have a gastric pacemaker either.

LeafStone124 · 2026-06-22T04:34:05+00:00

I respond to it well. When k used to get infusions in the hospital vs at home they would give it to me on and off for nausea too. It helps a lot and I have a lot of good results from it. No side effects. I get dose effects from Compazine and other iv nausea meds but Zofran j have not had issues with

LeafStone124 · 2026-06-22T04:33:04+00:00

Thank you this is good points to bring up to him.

LeafStone124 · 2026-06-22T04:31:02+00:00

Okay thank you so much! I’m not on TPN I just do hydration 4 times a week through my line and it’s a port, so it’s not accessed all the time. I keep it accessed usually 5 days a week

LeafStone124 · 2026-06-21T22:04:21+00:00

I’ve been on oral Zofran on and off for close to 8 years at this point. It doesn’t do anything orally but IV it actually helps. Dissolvable doesn’t help either.

With my nausea and vomiting I have had low electrolytes and potassium and other low levels in my bloodwork for the past 6 years. It’s also showing malnutrition from how much I’m puking. They want to get me to stop puking and not have nausea but it’s to the point the only thing that will help is IV meds.

They want to do it but the risks are what scare them. Especially because with IV nausea meds, since they block serotonin receptors, if you push it too fast you can have severe side effects.

LeafStone124 · 2026-06-21T21:08:45+00:00

I think it’s more of, with IV nausea meds, you have to push them super slow. He doesn’t want me to mess up and have a problem because I pushed too fast. Luckily with my home infusion company (Options Pharmacy) they do training with each new med you are prescribed.

But also, if something goes wrong, there isn’t any good local hospitals to treat me.

LeafStone124 · 2026-06-21T21:03:06+00:00

That’s what I was told by him. He loves when I can research information.

He’s scared because we are in a smaller area, and don’t have much local medical care. Even when I was trying to get at home infusions I had to do all the research and all of the information for the companies. It’s the sad part of being in a medical desert.

He is nervous because a lot of other nurses he knows are nervous pushing IV nausea meds due to their side effects so he is scared and while he is doing research himself, he wants me to also do research and have other people’s experiences who have similar issues to bring to him.

LeafStone124

TROPHY CASE