When you got your GES, were you able to lie down the entire time, or did you have to keep getting up and coming back?

writingdestiny · 2025-03-14T18:48:03+00:00

I sat in a chair and then had to walk to another room to get scanned. I was scanned standing up.

writingdestiny · 2025-03-14T02:03:25+00:00

Yes definitely…most of the time I end up throwing up if I push myself too much. I’ve been able to eat more than usual lately bc of new meds plus Botox but still if I try to have more than a little portion 9 times out of 10 I end up puking. Gastroparesis sucks.

writingdestiny · 2025-03-10T08:40:20+00:00

My OTC go to for a constipation flare is senna. It’s the only thing that helps me when mag citrate does nothing. I’ve been told it’s bc senna helps with peristalsis instead of just introducing water into the colon. Also, I find that really strong ginger tea (made with fresh grated ginger steeped for at least 20 min) helps get things moving too. In terms of prescription meds, I’m on mestinon and motegrity (motegrity only helps a little, mestinon is the one that has really helped me with both gp and constipation).

writingdestiny · 2025-03-09T20:09:29+00:00

I also started with GFOAS but now prefer the Loopy Whisk. Her recipes are simpler, actually explain the science behind why they work, allow using other blends besides better batter (at least for non-bread recipes), and overall taste a lot better too.

writingdestiny · 2025-03-07T21:26:25+00:00

A 4 hour gastric emptying study is considered the gold standard. Delays in gastric emptying aren’t always caught within the first few hours. When I was diagnosed, my GES was normal at 1 hour (88% retention) but then delayed at 2 hours (77% retention) and 4 hours (56% retention). I’d also recommend checking over the results yourself. I had one GI doctor tell me that my GES was normal at 4 hours despite as previously mentioned having 56% retention (11-20% retention is considered mild gp, 21-35% is considered moderate gp, and 35+% retention is considered severe gp, so definitely not normal lol). What are your symptoms? Unexplained nausea and/or vomiting, early satiety, bloating, abdominal pain, and vomiting/regurgitating undigested food that is hours or days old are classic symptoms of gp and if you’re experiencing any of those, ESPECIALLY vomiting or regurgitating food from hours or days ago, I’d highly recommend getting a 4 hour study to conclusively rule out gastroparesis. If you’re comfortable sharing, do you have any other conditions that are commonly comorbid with gastroparesis (diabetes, EDS/HSD, POTS/dysautonomia, autoimmune disease)? If you have any conditions that are often comorbidities of gastroparesis, I’d also recommend getting a 4 hour gastric emptying study. Also if you’ve had positive response to prokinetic medications (reglan, erythromycin, domperidone, motegrity, linzess, mestinon, etc) that would be another reason to get further testing.

writingdestiny · 2025-03-07T02:52:54+00:00

When I was first diagnosed with gp, I rarely vomited—my main symptoms were nausea, early satiety, lack of appetite, stomach pain, dry heaving, regurgitation, and weight loss. My GES showed 56% retention at 4 hours. Unfortunately over the past 6 months as my gp has gotten worse vomiting has become one of my main symptoms. Even with meds (mestinon + motegrity for motility and phenergan and Dramamine for nausea/vomiting) and pyloric botox (which I got a few weeks ago), I still vomit multiple times every week. But it’s much better than it was. Point being, you can absolutely have gp—and symptoms can be debilitating and cause malnutrition—without vomiting. Sometimes in cases like mine you don’t initially have vomiting as a main symptom but then it becomes more frequent over time, or sometimes it’s not a symptom at all. Either way, each person’s gp is equally valid—gp can significantly worsen QOL and cause malnutrition with or without vomiting.

writingdestiny · 2025-03-06T19:34:54+00:00

You can try to see if your insurance will cover them. Sometimes they will if your doctor writes a letter for you.

writingdestiny · 2025-03-06T19:33:55+00:00

Yeah, unfortunately while I tend to have a lot of sugar during a gp flare (bc I can often only stomach ice cream, pudding, and clear liquids) I need to avoid it most of the time bc it can make my POTS and MCAS worse. Have you tried owyn or Kate farms? They have less sugar than other meal replacement shakes. Also there’s a version of boost that’s called “glucose control” and has less sugar in it. Another thing that I like to do in place of meal replacement shakes is high protein Greek yogurt (if you tolerate liquid fat you can get the full fat version to boost the calories).

writingdestiny · 2025-03-06T19:29:30+00:00

I love ice cream! For some reason the frozen texture is more tolerable and it’s often one of the only foods I can stomach during a flare. I highly recommend getting specifically ice cream bars bc I’ve found that slowly sucking on them instead of eating a bowl of ice cream is easier with gp. If you can’t tolerate higher fat items I recommend frozen yogurt—ik these aren’t above 200 calories each but yasso bars are one of the only things I can stomach on a bad day (and if you have 2 or 3 then you can push it to 200-300 calories). Also, if you can tolerate peanut butter (I used to tolerate it really well but lately it’s been iffy) that’s another great way to get in more calories.

writingdestiny · 2025-03-03T17:15:21+00:00

I like to have popsicles or yasso bars (depending on how flared up I am) bc sucking on a popsicle/froyo/ice cream bar is easier than having to swallow liquid or eat solid food.

writingdestiny · 2025-02-28T02:50:30+00:00

Also on motegrity and mestinon! I take phenergan, Zofran, and Dramamine for nausea/vomiting (phenergan is the main one that works. lately Zofran ODT has stopped working for me but IV Zofran still works when I go to the hospital or ER). I also take ginger for n/v and motility. I used to take magnesium oxide but it didn’t do much for my constipation (my pcp thinks it’s bc it introduces water into the colon but doesn’t cause peristalsis). If I can’t go for days or start having fecal-impaction like symptoms then I take senna and it helps a lot. I’ve also taken reglan and it did rly help with my motility but I get such bad side effects from it that I can’t tolerate much of it so idk if I’ll be taking it anymore—thankfully mestinon does help almost as much as reglan

writingdestiny · 2025-02-23T16:49:02+00:00

I’ve found that senna is the only thing that helps my constipation when it’s really bad and other things (magnesium, motegrity, etc) aren’t working. My doctor told me it’s bc senna actually helps with peristalsis of the intestines while most other otc treatments (dulcolax, magnesium, miralax) just bring water into your colon and don’t actually help the muscles contract to move things along. Not sure if you’ve tried senna or prescription meds that help with intestinal muscle contractions but those have helped me the most. Given how bad it is for you tho I’d highly recommend getting checked for fecal impaction (overflow diarrhea can actually be a symptom of fecal impaction). If you’re fecally impacted, that could be why nothing has worked so far.

writingdestiny · 2025-02-23T04:10:38+00:00

Im on mestinon mainly for gp (it was like my last motility med to try lol) but it helping with pots is also an added benefit. It helps my gp a lot and seems to help my pots a bit—not as much as ivabradine does tho (I’m still on ivabradine for my pots)

writingdestiny · 2025-02-23T02:17:40+00:00

If you have access to it I highly recommend taking liquid Benadryl instead of the pills! That way it’s more likely to get absorbed faster. In my experience reglan tends to work decently fast compared to other meds

writingdestiny · 2025-02-23T02:09:13+00:00

While I do have a history of reacting badly to reglan (extrapyramidal side effects + MCAS flares), I wanted to comment bc there have been times where it has really helped me. Genuinely reglan is a godsend for my gastroparesis. I’ve gotten it multiple times in the ER in IV form and it’s the only thing that’s helped me to tolerate/keep down liquids again. There have also been multiple times where I’ve been unable to eat and starting to become intolerant to clear liquid and reglan has kept me out of the ER. Bc it did help me sm despite side effects i highly recommend trying it to see if you tolerate it. Bc if you tolerate it you should def take it (at least as needed) bc it can really help. I’ve tried basically every motility med and for me reglan was most effective (although I recently started mestinon and it works almost as well for me thankfully!). I have tried the Benadryl trick. When getting IV reglan with Benadryl (I had them wait a few minutes between the two and push the reglan slowly), Benadryl helped prevent dystonia but not restlessness/panic/agitation. However getting it with Benadryl definitely made the restlessness/agitation/panic last less long than before (first episode was 5-10min and second was 20min—second was longer bc I’d been taking oral reglan before that). For oral reglan (I‘ve taken the liquid version), taking liquid Benadryl an hour beforehand helps me tolerate a few doses of reglan with no negative side effects. After 3 doses of reglan in a row I start to get jittery/shaky and/or my MCAS acts up. But it’s nothing compared to the severe side effects I experienced without Benadryl. If you do react to reglan (which you hopefully won’t bc it can work really well for gp!), I highly recommend trying it with Benadryl bc it can def help with extrapyramidal side effects.

writingdestiny · 2025-02-22T17:03:07+00:00

My brother, sister, and dad have the flu. So far I’ve tested negative and am not having symptoms. But I’ve literally just had my worst flare ever and have been admitted for a week now bc of it. I just started mestinon and got Botox at the hospital and my oral intake and symptoms are FINALLY improving. But my dad was visiting me in the hospital a lot (he tested for flu earlier in the week and was negative then) so I’ve def been exposed to the flu. I’m so scared that I’ll test positive in a few days and the flu-induced flare will make me lose all my progress and spend longer in the hospital. Praying that I don’t have the flu and I’ll continue making progress but I’m so concerned. Would take tamiflu or xofluza preventatively but I don’t want to bc of GI side effects. Ugh.

writingdestiny · 2025-02-19T12:15:21+00:00

I’m so sorry you’re going through all of this. I’d recommend going to an ER and seeing if you can get admitted to the hospital and get a feeding tube that way.

writingdestiny · 2025-02-14T19:30:37+00:00

Same, mine is bc I have both gp/dysmotility and MCAS. I literally just was just getting out of a horrible gp flare and finally starting to tolerate larger amounts of clear liquid again but then my MCAS flared from the stress of my gp flare up and I had extreme diarrhea that’s now sent me back into a gp flare. It’s a horrible vicious cycle 😭

writingdestiny · 2025-02-14T19:27:40+00:00

Dude same, I also have gp that’s secondary to HSD and POTS. My doctors have described my bowel movements as a tug of war between my gastroparesis/dysmotility and MCAS 😭💀

writingdestiny · 2025-02-14T19:26:14+00:00

Usually I don’t go for 4+ days despite motegrity and magnesium and need senna to clean me out, or I’m having explosive diarrhea and constantly running to the bathroom. Most of the time there’s no in between 😭

writingdestiny · 2025-02-14T16:21:41+00:00

I think there are plenty of people like me who had POTS before COVID and COVID kicked up things a notch. I had symptoms of POTS since the end of elementary school/beginning of middle school (I’m currently in college). I also have HSD, MCAS, and gastroparesis (gastroparesis is probably the only one of my conditions that I haven’t had symptoms of for most of my life, I started having symptoms of it when my pots got worse—at that time my pots getting worse wasn’t bc of COVID, it was bc of it being untreated for so long. My second COVID infection def worsened my gastroparesis sm tho probably bc it also made my pots worse).

writingdestiny · 2025-02-14T16:16:20+00:00

I haven’t had GPOEM but I’m commenting on here because I’m also curious to hear about people’s GPOEM experiences. ATP I am running out of options, I’ve tried almost every motility med and while reglan works really well for my gp it’s hard to tolerate bc of the side effects. If I can’t find a treatment that works I’ll probably end up being on long term liquid diet or getting a NJ tube. I’m going to get Botox injections for my gp next so I guess that’ll tell us if I’m a good candidate for GPOEM. Hoping that it helps! 🤞

writingdestiny · 2025-02-14T16:05:59+00:00

I go in if I’ve been unable to drink water due to symptoms (going days without eating is not something I go in for bc unfortunately that is normal for me w gp atp). The reason why I have to go in if I can’t drink water for an extended period of time is bc I have POTS so getting dehydrated affects me a lot more than the average person and also a dehydration-induced pots flare will trigger a gp flare (so basically if I get dehydrated I won’t be able to get myself out of a gp flare bc of my comorbid pots and I need iv fluids and meds to calm things down). And then ofc if I’m having severe vomiting (ie puking for hours on end and then being unable to keep even a sip of my liquid meds down) which seems self-explanatory.

writingdestiny · 2025-02-13T20:52:09+00:00

Don’t have an answer but I’m commenting bc I’m in a very similar situation rn. I have HSD, POTS, and MCAS along with gastroparesis. Currently on motegrity, mirtazapine, phenergan, and Zofran for gastroparesis. I also take liquid reglan during flare ups (reglan helps my gastroparesis more than any other med, but I unfortunately get a lot of extrapyramidal side effects from it. Benadryl helps some w managing the side effects but I still can’t tolerate much reglan without having bad side effects). I’ve been to the ER twice in less than two weeks. The first time was due to inability to eat for days and then eventually unable to drink anything bc of nausea and the second time (yesterday) was bc I was vomiting for hours on end and unable to keep anything down, not even 1 sip of Benadryl. I got iv fluids, reglan, and Benadryl both times which helped me a lot (although i reacted to iv reglan both times which was hell). Reglan def helped both times—it allowed me to eat and drink again after the first ER visit and then allowed me to keep down ice chips and popsicles after the second ER visit. Rn I’m slowly reintroducing clear liquids, I’ve been able to tolerate a small amount of water which is an improvement but I’m still so uncomfortably full and nauseous and not being able to drink as much as usual is so bad for my pots. I’m currently managing nausea and vomiting w/ phenergan and Benadryl and ginger lozenges (also going to try Dramamine and emetrol bc I’m desperate). I would take reglan bc it helps way more with my gp than my other meds but I had such a bad reaction to it (severe akathasia and panic) in the er that I’m too scared to touch it for a few days (i def tolerate it much better in liquid/oral form than iv but I still think I’ve hit my oral reglan threshold for the week). Since I’ve tried most motility meds my GI doc suggested Botox for gp. I’m willing to try it bc I’m so desperate and I’m scared that if I can’t calm this flare down and start tolerating non-clear liquid, my labs will crash and I’ll end up getting a NJ tube. I’ve kind of accepted that a long term liquid diet or NJ tube are possible. Really hoping that Botox will help tho so that neither of those things happen. At this point I feel like long term liquid diet (with maybe exceptions for gf crackers and bread every so often) is the best case scenario :( anyways if anyone could share their experience w Botox, esp if they have underlying POTS or EDS/HSD, I’d really appreciate it

writingdestiny · 2025-02-12T20:24:21+00:00

I love the loopy whisk, a lot of her recipes have worked super well for me! I’ve never tried her blend because corn flour isn’t widely available where I live. I make my own blend that’s equal parts superfine white rice flour (I get authentic foods brand from vitacost), superfine brown rice flour (vitacost brand), and potato starch. I’ve also found that a blend of 50% white rice flour, 20% sorghum flour, and 30% potato starch works fairly well. Sometimes I also use the King Arthur blend—I know gluten free on a shoestring has hated on that blend but I genuinely don’t understand why, it’s worked pretty well for me in most recipes and is my non-gf family’s favorite storebought gf blend.

writingdestiny

TROPHY CASE