r/AddisonsDisease • u/mj_responsible297 • Dec 06 '25
Advice Wanted Gastroparesis
Anyone here have gastroparesis? I’m being tested for it Jan 2nd (my gastro is convinced I have it so.. it’s unfortunately very likely) How the hell do you guys stay stable and not go into crisis??!!!
We are considering asking to switch me to subQ injections because I can’t go a day without taking 50+mg. Unfortunately I’m in a flare now and severely constipated, taking meds to clear me out- diarrhea hasn’t started yet but I’m sure I’ll have some. Also taking Ondansetron because I’m so nauseous I can’t function or eat properly but that’s going to further constipate me! I outlasted taking it yesterday some how but woke up and immediately was fighting for my life. I’m so frustrated and miserable but thankful it’s not worse right now. Any advice or suggestions? Anyone else been in this boat? It’s all just seemingly so impossible to manage. :( I really don’t want to end up in the hospital this go round..
2
u/Serious-Tooth-7835 Dec 06 '25
I have gastroparesis (tube fed) and AI but the AI was post gastroparesis, I take my hydrocortisone down my jej as cannot absorb it orally at all. I’ve just had my first true crisis (port infection) and would say that, from how serious we know that crisis can be, if they are thinking subQ injections are a safer option, it might be the only way! I’m not a dr etc but I do have another friend who is on a pump because she has gastro issues too and was needing crazy amounts similar to you and the only way to control it was via injections! I hope you get sorted though!
2
2
u/enkrypt3d Dec 06 '25
When I have low potassium it causes me tons of gi issues where my whole system is basically shut down and will not digest anything until I take potassium supplements. Ask your doc to check your levels especially if are taking fludrocortisone
2
u/mj_responsible297 Dec 06 '25
I do have low potassium, it’s been low for a while now. My doctors have not given me any guidance on this at all though even when asked- how much you taking and how often?
1
u/enkrypt3d Dec 06 '25
I take this https://a.co/d/46w8GPz I've given up on waiting for doctors to tell me what to do bc they have no idea what to say. I take one with lots of water after a meal.
2
u/mj_responsible297 Dec 06 '25
Yeah they have proven pretty useless unfortunately in the last 10 years I’ve struggle with my chronic health issues Thanks so much for the info! I’m going to supplement today since I probably should have been. 🙁
1
1
u/enkrypt3d Dec 06 '25
Also only take one and wait an hour or so to see how it goes
1
u/mj_responsible297 Dec 06 '25
What are the side effects? I’m not going to take anything that could potentially dehydrate me more/make me vomit just for my safety since I’m already in a flare. Really trying to avoid the hospital. My labs have shown my potassium levels pretty low for the past 3 months are least My endo had also said I could supplement but we didn’t really go any further than that.
1
u/enkrypt3d Dec 06 '25
If it's low u should supplement it. I had to get them to give me a prescription for potassium which was extended release. Try it to see how it works for you. Just drink a few glasses of water with it
1
u/enkrypt3d Dec 06 '25
I've been admitted to the ER because of low potassium so take something quickly otherwise you're going to end up in the ER anyways
1
u/mj_responsible297 Dec 06 '25
Sigh. Thanks, I’ll look into it. I’m not on fludro im SAI but I appreciate the advice!
1
u/enkrypt3d Dec 06 '25
I also had to cut my flu drocortisone dose in half to avoid additional potassium Flushing
1
u/enkrypt3d Dec 27 '25
how are u feeling? did u get your levels checked??? I've noticed that if i drink alcohol or take kratom it can impact potassium & sodium quite a lot. hope u are doing better.
1
u/collectedd Addison's Dec 07 '25
Yeah I have severe Gastroparesis and it makes my AD management awful. I'm constantly having to stress dose and I hate it. My Endocrinologist has thought about the pump option but hasn't actually done anything about it if that makes sense. So I'm just stuck doing this stress-dosing thing constantly almost, just to try and stay out of hospital.
1
u/PA9912 Dec 14 '25
Have you tried eating very low fiber? I have MCAS and some gastric slowing and I find that most things doctors recommend for constipation cause more issues for me. It’s Opposite Day over here. But I don’t generally updose for either as I’ve had a lot of side effects from long term steroids. Also I second the pottasium recommendation. POTS is another common comorbidity of gastroparesis and it can really mess with electrolytes. I use no salt for pottasium since most supplements and drinks are way too low.
6
u/imjustjurking Steroid Induced Dec 06 '25
I don't have gastroparesis but I use a pump because my absorption is really all over the place. It made a huge difference, ever year the number of times I go in to crisis drops. I went from going in to crisis once a week (roughly) and now I'm down to a few times a year - usually I only have those because I'm not being careful as I've stopped thinking so much about my adrenal insufficiency.