u/Sad-Vanilla-6877

hi i’m kinda just looking for some advice. i’ve had about 5 episodes of kidney stones (in 1.5 years) with typically 2 or more stones (calcium oxalalate ones i think) they’re always small enough where my drs haven’t been worried about obstruction. i’ve had a lot of symptoms the past year like utis, regular burning when i pee, need to pee but little to nothing comes out, only peeing 2-3 times a day regardless of how much fluid i’m drinking, some urinary incontinence, blood in my pee, dark brown pee, foamy pee, pain, and obviously kidney stones.
although my current one has supposedly passed since they can’t find it on ultrasound or x ray but im still in pain/ other symptoms and they didn’t see a stone pass when they kept collecting my urine but nonetheless back to my point.
i had met with a nephrologist a couple months back and when my mom mentioned her history with kidney stones (same type and had hers for 20+ years and had well over 60 stones passed with needing surgery 2 or 3 times) he immediately was like i wanna get genetic testing done for this rate kidney disease primary hyperoxaluria 1.

does anyone have experience with this?
i have quite a couple symptoms and so does my mom along with other family history of kidney stones etc but like how scared should i be? i know it causes kidney failure eventually and that terrifies me i have a lot of medical problems and this was the last thing on my radar.
how is living with ph and what has your experience been?
how do you manage it? (i’m already in extra fluids and potassium citrate)
what were your first symptoms?
any advice you have for me?

hi i honestly need to vent a little and hear others experience with family members having symptoms of ibd too. i apologize that this is so long.

for context and a little bit of me just venting
i got diagnosed with uc in august but had been undiagnosed for 3 -4 years. my symptoms started slow until december 2024 i started having bloody stools and it cascaded from there 2 colonoscopies/endoscopies later i started medication in june 2025 and officially diagnosed august 2025. i have moderate uc in my rectum and a mild patch of ulcers in my cecum i’m on 4 g of oral mesalamine and suppositories during flares. my oral meds have been upped 2 times and my last colonoscopy in march 2026 showed active uc in my rectum and cecum on biopsy but not visible by eye (or scope pictures i guess) . i’m not sure what that means mu gi dr said it’s healing but i got a second opinion and they said it’s not healed it’s just not in an active flare?
Im waiting to start biologics (by what my gi drs want) as ive been flaring every 2 weeks for months (even on steroids) and lost close to 20 pounds in 3 ish months and my symptoms have been insane plus i was/going to the bathroom 10+ times a day for weeks which i didnt even do prior to being diagnosed and was flaring with insane amount of rectal bleeding for 8 months. i now only go that much while i’m actively bleeding or fully flaring. on a good day i go 2-4 times. flare ups it’s 6-10+ a day. i just need to do a calprohectin which my drs have been begging for.
(but honestly ive been avoiding it as im so incredibly over dealing with this and dont want to have to face the fact i might have to actually start biologics)
i am incredibly worried my uc has spread as ive been having bad pain in my lower left side and my symptoms are more extreme but honestly im just so over this. i didnt call my gi for my symptoms when i was on steroids cus for the first time in over a year i thought maybe just maybe i didnt have to monitor my symptoms and have to deal with them. so for once i just ignored my symptoms and let myself just move on. bad fucking idea genuinely so dumb because again i lost 15-20 pounds and was having extreme symptoms. Idk i feel so dumb cus liek the one time i drop the ball my entire body shits the bed and decides now is the time to get more extreme. It’s like i can’t even take a break of stressing over my uc constantly monitoring or doing blood work or stool test because when i do my life falls apart.

any advice to figure out how to manage my uc without feeling like it’s taking over my life or how to deal with the fact i’m gonna have this forever cus rn ive hit a new low of ignoring it completely. i know it’s my fault but there’s something in me that’s like what is the point of doing another test for nothing to change for my body to never get better from this stupid fuvking disease.

But anyway i’ll have to try and figure that out another time.

back to my point
i got diagnosed relatively recently and got diagnosed in my teens and i have been on my family members ass’s to be aware of any symptoms they may have like blood in their stool and whatnot.
no one in my family has ibd my mom has almost every symptom but colonoscopies and calprohectins are normal.

However my sisters who’s in her early 20s recently started having bloody stools. she’s been under so much stress recently and has been feeling like crap but she’s one of those people to push these things aside until her body forces her to deal with them (which is okay i was the same tbh).

i’m not sure how common it is for your siblings to get ibd too but i do know my gi recommend my family is aware and cautious of any symptoms they may have as they would need to get a colonoscopy to rule out ibd.

anyways so shes had bloody stools for over a week im not sure if they’ve stopped but she also has been having joint pain the last couple months, feels sick all the time, been fatigued and napping way more then usual, had dry eyes and mouth ulcers. She basically is having some of the same symptoms i did prior to being diagnosed and i know stress can trigger ibd (our life’s have already been incredibly stressful our family is rough and we grew up in a very chaotic abusive household) plus she’s the oldest sibling and i know she’s taken on a big role of helping and mediating everything
i swear i’ve never seen this girl relaxed so stress could definitely be part of it.

side note she did start acutane semi recently but some of her symptoms started prior to starting liek her joint pain and mouth ulcers but the bleeding did start like 2 months after starting it.

anyways should i be worried for her? i mean the bleeding without any haemorrhoids is enough for me to be concerned about it.

what is the real risk for siblings of a person with ibd? i keep pushing for her to get a colonoscopy but once again she’s very like i don’t have time to do deal with this. I’ve tried talking to her because i know she’s stressed but this is something you have to put first but she doesn’t feel like she has the space to deal with it rn.

does anyone have any advice for me or for how i should go about talking to her and does anyone know the real risk she carries with me having uc?

thanks for reading if you’ve made it this far i really appreciate it.