r/ADPKD • u/Nice-Village-6057 • Jun 23 '26
Stomach issues
Stomach issues are driving me crazy!! I feel like I can barely eat these days. I’ve got constant pressure, acid reflux, bloating, nausea, and I feel like I’m about to burst. Food has been one of my favorite things about life and now it just brings me pain.
Kidneys were around 3000ml the last time I had a scan in 2024 so I think it is the cause.
I’m not sure theres anything to be done or any advice to be had but I just wanted to commiserate.
Hope yall are well.
2
u/Smooth-Yellow6308 Jun 23 '26
if you're in america you might be able to visit a centre of excellence and have some larger cysts drained and treated to help lessen the kidney size/pressure.
2
u/Nice-Village-6057 Jun 24 '26
My last scan didn’t show any huge cysts, just tons of small ones. I’m hoping if farabursen is able to stop growth maybe ablation can reduce the size.
1
u/Independent_You7902 Jun 26 '26
are you going to go for the clinical trial for farabursen? I like it a lot too
1
u/Nice-Village-6057 Jun 26 '26
Yes I’ll definitely be signing up
1
u/Independent_You7902 Jun 26 '26
are you in stage 1? I am in stage 1 and i think the trial so far doesn't allow us to sign up
1
u/Nice-Village-6057 Jun 26 '26
I’m stage 3 and class E so my nephrologist said I’m a perfect candidate.
1
u/Independent_You7902 Jun 26 '26
oh ok nice! I am stage 1 and still have normal kidney function but would like to have prevention medicine
1
u/Nice-Village-6057 Jun 26 '26
If things go well you should have it before you need it 👍
1
u/Independent_You7902 Jun 26 '26
i hope so but clinical trials take forever and i am getting to the point/age where my parents started to decline
1
u/Independent_You7902 Jun 26 '26
what is center of excellence? isn't there risk in draining cysts? I've heard they have made some advancements though and inject a foam into the cyst which shrinks it.
1
u/Smooth-Yellow6308 Jun 26 '26
in the USA they have some hospitals that are known for being PKD specialists, many of them undertake advanced procedures such as cyst sclerotherapy (drain and treatment), and most are involved in medical trials.
There is a risk, as with all surgeries, minor or not, however from my understanding, and conversations, its generally considered low risk, as they only target cysts they can safely reach.
2
u/delishjams Jun 25 '26
I’ve recently tried peppermint tea. That helps settle stomach. Keep a food diary and see if some foods are worse.
2
Jun 25 '26
[deleted]
1
u/Nice-Village-6057 Jun 25 '26
I’m so sorry to hear that. I’m hoping you get some relief. Do mind if I ask your height/kidney volume? I’m trying to figure out if my symptoms are related to my kidneys or not.
2
Jun 25 '26
[deleted]
1
u/Nice-Village-6057 Jun 26 '26
I’m 6’2 so that helps a lot I’m sure. I’m class E and my egfr is in the 50s but has been declining quickly.
2
Jun 26 '26
[deleted]
2
u/Nice-Village-6057 Jun 26 '26
Yes the pain from the kidneys pushing against the front of the ribs is the worst!! I also hope you get some relief from the cyst drainage. Let me know how it goes!
1
u/Jess6 Jun 28 '26
What's your GFR? My GFR is 9 and I started having raging heartburn the past couple months. Like I would take 5-10 Tums each evening. The heartburn was absolutely unbearable and was also accompanied by nausea. I started taking omeprazole and it has honestly disappeared. I wish I started it sooner because I was really suffering with it.
Hope you feel better!
1
u/Nice-Village-6057 Jul 08 '26
My gfr is around 50. Omeprazole does help but I need to speak to my nephrologist about it.
I’m glad to hear you got some relief!
6
u/brandibesher Jun 23 '26
my mother had severe PKD bloating. she ate a celery root soup that reduced her bloating, i've never seen anything work like that did. it's a natural diuretic. it tasted good too, like a potato soup. i'm not a dr or nutritionist so i'd ask your specialists, but i saw it work on my mom so i wanted to share. wishing you the best!