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Posted 8/9/2023 11:21 PM (GMT 0)
🙏 🤞
No pain for Clo!
Posted 8/10/2023 3:05 AM (GMT 0)
FlowersGal,

You made me laugh...
Thank you!! Keep those fingers crossed!

Michelejc,

The old pills stated to take once a day. The new script is twice a day. The old pills made me sleep pretty deeply.

I took the new pills today at 3. I'm just now sorta coming out of the fog but am still really tired and sleepy....(I didn't check the strength of old pills....but maybe older means they've lost some of their oompf..?)

But I can tell you that the other name for the medication (FlowMax) is appropriate....and when I had to go I had to go right then.... Running to the bathroom. Feels like old times before my colostomy....lol....

I've only had to take the 1 celebrex at 300.

Pain level is ok...

Clo

Post Edited (clo2014) : 8/9/2023 7:09:06 PM (GMT-8)

Posted 8/10/2023 12:06 PM (GMT 0)
Did you talk to Urologist about Potassium Citrate??
Works for me and I was getting chronic stones.
Had 5 procedures/surgeries since 2019.
Posted 8/10/2023 2:07 PM (GMT 0)

3timechamp said...
Did you talk to Urologist about Potassium Citrate??
Works for me and I was getting chronic stones.
Had 5 procedures/surgeries since 2019.

I asked my doctor about that. He said it depends on the type of stones.
Posted 8/10/2023 11:52 PM (GMT 0)
Were you stones Uric acid stones??
Posted 8/11/2023 2:48 AM (GMT 0)
I did talk to the doctor about Potassium Citrate. He said that he wanted to wait until after I passed this stone, and that he didn't want me to take it with the meds I'm currently taking. Celebrex with the FlowMax......

I can tell you that either I am really tired and run down or these meds are making me sleepy....plus the lights are on and no one is home.....

Good thing no pain... Bad thing no kidney stone yet....

How long does it take a distal ureteral stone to pass? I've read so many things...anywhere from 12 to 31 days... Yikes!

Clo
Posted 8/11/2023 1:17 PM (GMT 0)
I believe I’ve read any supplement with citrate in its name helps break up kidney stones. Or keeps them from starting.

And I am also pretty sure you have to be careful of taking potassium supplements.
Posted 8/12/2023 2:21 AM (GMT 0)
Thanks for responding all!

I spoke to my doctor again today. Still no darn Kidney stone... Do they have a designated time frame and if it doesn't come out they go in and fish it out? I asked him and I think he evaded...or else these meds are messing with me more than even I thought.

The FlowMax can cause low blood pressure? And with everything else he does not want me to take the potassium Citrate right now. So I'm waiting.

But that stone is stuck and spinning in circles. Its just not completely obstructing. I've walked, jumped, hot baths, drank the vinegar/lemon juice/olive oil....nothing is moving it. 😡

And while the pain meds and Flow Max was ok the first night...I'm tired of sleeping all the time, being zombie like when I am awake and confused while not having anything happening.

They should make a little portable kidney stone vacuem that we could use...lol.... J/K.....

Thanks for you knowledge, experiences and support. I appreciate you all.

Clo
Posted 8/12/2023 3:18 PM (GMT 0)
Best thing to do is lead a somewhat busy life.
I've had stones in kidneys that did come out without me using painkillers when I thought the SEVERE pain was coming on. By working,going to gym etc etc etc it keeps me out of myself so I'm not obsessing on stones or anything else in life we can obsess about.
Again in my case potassium citrate has definitely helped. With UC it's same thing. When possible don't obsess with UC(not easy when in a severe flare-been there done that). UC Surgery gave me my life back. Potassium Citrate has done the same just on a much smaller table. Good luck and God Bless to all
Posted 8/14/2023 3:56 PM (GMT 0)
Thanks all..

I talked to my doc. He's a PCP. He knows some things about kidney stones but usually refers to a urologist.... But the urologists here are all booked for a month and won't give meds until after they see you, --even if they are your urologist and they did surgery on you 7 months ago. (I'm finding a new one... But new patients are booked out at 2 months...)
Anybody else notice that doctors are so busy it's difficult to get in quickly? Or is it just in the Dallas area?

I'm taking Moonstone Kidney Stone stopper... 3X a day. Which is the same as taking the potassium Citrate but with other supplements added in which should help in dissolving/preventing stones. The OTC capsules are cheaper than my prescription deductible amount because Insurance wasn't covering the script for potassium Citrate as they consider it a supplement....(But pharmacy is still trying to get it to go thru.) I'm also going to take the ACV and lemon juice 2x daily. (That stuff is Nasty!) 3XThank You for keeping on me about Potassium Citrate.. I probably would not have pushed it... And after talking to my doc today... he thinks that this may work for me too....and I might not have irregular heart beats with it and it's worth a try if I'm willing. Rusty, Thanks for the recipe. My doc looked that up too and there's actually a study where they used double your amount--thats why we tried the 2x daily. Everyone.. thanks for your kind words and support.

The constant feeling of irritation finally abated yesterday and today its moved to my bladder with intermittent irritation/pain. I forgot to ask if I should still take Tansulosin 2x a day now. ... Sigh... I'm trying not to take pain meds.

3X... I don't know how you went thru it so often. Yikes!! I know I don't want to do this again. Doc said the Cranberry pills along with the extra salt I take (my body cramps up if I don't take it. I'm not digesting it correctly.) and the vitamin D are probably helping to develop kidney stones.. but since I have to take those we are going to have to figure a work around... And hopefully the stone stopper and ACV/lemon juice will do it. Didn't know about the cranberry though.... And honestly I drink a huge glass of cranberry juice daily... Lol...

I'll let you know how it goes.

Thanks again you guys!

Clo

Post Edited (clo2014) : 8/14/2023 8:11:13 AM (GMT-8)

Posted 8/14/2023 4:06 PM (GMT 0)
I take two of the moonstone gummies every day. Keep us updated!!
Posted 8/14/2023 4:21 PM (GMT 0)
Clo, back on the 8th you said you had made an appointment with a new urologist that you were seeing that Thursday, what happened?

You seem to be on a mix of things, hopefully the stone will pass.
Posted 8/14/2023 4:22 PM (GMT 0)
Hey Michelejc...

Thanks for posting about the Moonstone. I wouldn't have known about it and I'd have been out a bunch of money. Pharmacy wanted almost 100.00 for the script. I haven't shopped that amount at other places yet because I have the Moonstone.

Thanks again! I'll keep you posted.

Clo
Posted 8/14/2023 4:40 PM (GMT 0)
Straydog,
New urologist wanted yet another CT scan before seeing her..... And my insurance said no. (I'd just had one) She said she couldn't treat me without the new CT... As the old one (a week or two old) would not suffice to protect her on her liability. The stone could have moved or gotten larger. (My old urologist couldn't get me in until after the 25th... And I only used him for my surgery because he was the ER doctor and could work me in sooner... But he left at least 1 stone behind after surgery...)

So I cancelled my appointment with her. Why go see her if she's not going to give meds... Or treat because she wouldn't accept an "old" CT. She doesn't usually use X-rays because she feels they are not as reliable... Or so her office manager said. I asked to speak to the doctor or PA but they refused because I am not yet a patient.

Catch 22.... I couldn't afford to pay for another CT scan on a cash basis. Plus my PCP said that getting those scans alot is not good for you....

So.....I'm going thru my PCP for now.... I don't know what else to do as the other Urologist are 2 months out. They all told me to go to the ER if I'm in pain and after that they could work me in sooner.... What????

I feel like I'm in a maze and running into dead ends repeatedly. When did it get so difficult? And when did Urologist think they should only work during office hours??? I hope it's not coming to that with my other doctors.... My nephrologist moved away... Didn't tell anyone until 3 days before.. so she wasn't available either.... I've gotta start over from scratch with my kidney doctors....

What a hot mess...

Post Edited (clo2014) : 8/14/2023 9:11:34 AM (GMT-8)

Posted 8/14/2023 5:28 PM (GMT 0)
Oh.... And my urogynecologist... She doesn't treat kidney stones..... So she could only offer referrals which pushed appointments to other urologist to the 25th ... And some urologist only treat prostrate, others kidney stones, others cancer. They've got it broken down so much--with no qualifiers on the web--that you don't know until you call in. And those large practices where they combine doctors to one call in scheduling place and supposedly your records are on line... That you're supposed to have more options when you get sick.... The doctors I called from there didn't want to see me cause I already had a doctor ... And when I tried a "work around" of you are physically closer to me.... They wanted me to come in as a new patient... Two months out from when I called. If I tried the "I'm sick and need to get in sooner they referred me to the ER.

Is it like this everywhere?

Clo
Posted 8/14/2023 6:28 PM (GMT 0)

clo2014 said...
Hey Michelejc...

Thanks for posting about the Moonstone. I wouldn't have known about it and I'd have been out a bunch of money. Pharmacy wanted almost 100.00 for the script. I haven't shopped that amount at other places yet because I have the Moonstone.

Thanks again! I'll keep you posted.

Clo

You are very welcome!!
Posted 8/15/2023 12:02 AM (GMT 0)
Clo, Sorry to hear you’re having all this trouble, the stones sound awful and the mess with getting in to see a doctor in a timely manner is so unreasonable. I know it’s become the norm in Canada too, and I’ve heard the same 'work around' of going in through emergency as a way to move things along quicker. Given the overstretched situation of emergency rooms, sometimes forced to close due to understaffing even in large centres, that's just not a viable solution from so many angles. That's here - I’m not sure how things (don’t) work elsewhere.
Hope this all works out for you as quickly and painlessly as possible.
Posted 8/15/2023 5:55 AM (GMT 0)
Sorry for whining so much guys.... But I don't think I've ever felt this frustrated. I spent another 3 hours or more trying to get into a urologist..... Nada... Zip.... ER is something I was thinking of but it's so expensive!

But my GI called me to tell me that I could go back to a urologist he wanted on our "team" back when the kidney infections first started...(like that doctor was now doing me this huge favor) but I was unable to develop a good relationship with him during 10 months...he didn't check my hormones or recommend a urogynecologist... recommend any imaging or scopes... he just prescribed antibiotics until they didn't work on the infection any longer and I had to have IV antibiotics daily for a whole month. (Thank God for my infectious disease doctor and urogynecologist.) So I told my GI I'd find my own urologist but.....I ran into that big conglomeration of doctors that do not accept you if you've seen someone else on their staff without a really "good" reason.. (GI urologist was part of that) The ER urologist (also a member) that did my surgery was an hour closer to my house and he did treat me in the ER... So they were willing to transfer me to him.....He's still booked til next month now.... But when I tried to get any other doctors to see me this time I had to get it approved thru their office manager and they all had to be new patient appointments with a delay time of 2 months. I felt like they were trying to force me to go back to either the ER doctor or the first doctor who didn't really want to see me but would because my GI asked him to.. Such a nightmare....

Thankfully my PCP Called in another batch of meds. He just got the rest of my paperwork (post surgery..CT, X-rays and scope) from ER urologist and apparently there was scar tissue in the ureter and urethra plus folds in my bladder... so it might take a little longer to pass the stone and the narrowing might make it a little more uncomfortable.... The good news is he did give me some heavy duty pain meds and I didn't have to ask. Celebrex for light pain and Norco (10 whole pills..) for bad days.

I'll touch base with him again on Friday.

Staying active....

Anybody else have "folds" or wrinkles in their bladder? I can't remember the name for it.....

Getting old is no Bueno.

Clo
Posted 8/17/2023 4:43 AM (GMT 0)
🥳🥳🥳🥳🥳Bingo!!!! Party time!!!
No pain!!! 🥳🥳🥳🥳🥳🥳

Going, going, gone!!!!

Bet you all are relieved... No more of my whining... TG!!! I was getting sick of it too---and I had Norco to numb the pain... Lol....

Thanks All!
Posted 8/17/2023 12:50 PM (GMT 0)
YAY!!!! Keep taking the Moonstone....
Posted 8/17/2023 3:15 PM (GMT 0)
Hey... Please let me know what your images show.

I'm still taking the moonstone 3 times a day with 1 shot if ACV/fresh lemon juice. (That organic lemon juice taste is too gross for me... I'll use it for cleaning... I hope the fresh lemon juice works as well.)
Posted 8/17/2023 5:13 PM (GMT 0)
So you passed the stone? Just curious how you could tell? Did you feel it pass or could tell from the lack of pain? (Have never had a stone, TG, so just curious.)

I believe I have folds or something like. Lately when I pee I stop and have to wait and then go again a bit — 3 times! Used to be just twice but is worse now.

In other news, I know we both are on cranberry and estrogen cream for frequent UTIs. I am also taking raloxifene (synthetic estrogen). Regimen was working great until yesterday when I developed (suddenly without any warning) another massive UTI. Started my antibiotics yesterday and already feeling a bit better but a little discouraged to have another one. It’s been almost 2 years since my last infection so it is a big improvement — so I guess I’ll be grateful for that!
Posted 8/18/2023 2:31 AM (GMT 0)
Oh FlowersGal... That sucks about the infection. I'm sorry.

Hey on the infection.. I had a UTI test done before the scan and it was high in nitrates but they could not get the bacteria to grow. My urogynecologist said that was because of

1.) Estradiol (vagina cream), it raised my PH from 5 to 6. It used to be 7 prior to the beginning of the UTIs...so now I am wondering if I should be on pills also or instead....
2.) Ellura cranberry pills,(I use the ones you recommended but had Ellura stashed for just in case I started a UTI...I restarted using the Ellura when I felt the UTI starting... A few days before I saw her. She swears that when you are starting a UTI to switch over to the Ellura brand at least for a week or two and then I can go back to the generic). She just thinks they work better fighting the infection and clearing it....
3.) D-Mannose powder which should be increased from 2grams 2x daily to 2 grams 3 or 4 times daily. (The D-Mannose powder is from CNPUSA. You can order from them or from Walmart online. It's app.25.00 a tub which has 140 (2 grams) servings per tub.) She said you need to take powdered D-Mannose with cranberry and Estradiol. No pills...use powder. It helps block the bacteria from attaching. There's a different portion of the bacteria that the cranberry impacts, the Powdered D-Mannose attaches to yet another part making it even more difficult to get an infection.

I hope you get better soon. 2 years is pretty good....

My infectious disease doctor tried to get me into a UTI vaccine trial phase 3. They would not accept me because of my steroid usage in the last 6 months. It something to look into. He said that the vaccine works.

Kidney stone...Well it sorta just "plopped" out when I drank a bunch of water after drinking that awful lemon juice/ACV/oil combination. It was sorta weird cause when I wiped only the urethra area I had this remaining glob of something sorta hard surrounded by mush. I wondered if it was a part of the stone that the stone stopper had started dissolving...but there was that plop into the toilet. I had a slow urine stream, I heard a plop and things picked up. 30 minutes after that plop my bladder stopped cramping and it didn't feel like it had red hot jalapenos stuffed in it...or a very thick string hanging from my bladder all the way thru my urethra. Lol.. so I guess that was the stone. It missed the "hat" I was peeing into and I could not see it in the toilet--, it might have sunk to the bottom... but I haven't had cramps, hot pain, or feeling like a very sharp object was spinning around in there since the plop... I have a normal urine stream again. I stopped the meds and so far I feel better but sorta raw in the bladder and urethra. I'm.still taking the increased amount of supplements per my urogynecologist for another 2 weeks. She wants to be safe. (A urologist I saw for about 20 months didn't do any scopes and just kept giving me antibiotics. When I got my last UTI the antibiotics didn't work on it...we had to use IV antibiotics daily for a month. My infectious disease doctor was very upset that nothing had been done and he's the one that rushed me into my urogynecologist. TG.) My PCP said to wait and see how I feel in a week and I'll go in for an X-ray if I feel like I need to but he thinks it was the stone. He told me to keep taking the stone stopper and we'd see what it did to the other stone...

I hope you feel better soon!

Clo
Posted 8/18/2023 2:38 AM (GMT 0)
Oh.. and urogynecologist told me that if/when I start having issues like that when peeing to watch for pain.. and the inability to restart...especially with UTI. If you get nauseated or get a fever...call your doctor. UTI can cause inflammation and you don't want that urine stream to be stopped up.

If it is happening when you don't have a UTI your supposed to start kegel exercises and go in to see your urogynecologist. It could be due to pelvic floor weakness and there's physical therapy for that.... But you want to do the PT sooner rather than later.

Sorry for the long post...
Posted 8/18/2023 2:41 AM (GMT 0)
Midge22,

Thanks! I just noticed your post--sorry first pain free and medicine free day in awhile. The lights were on but no one was home...

Welcome to the forum! I'm glad you found us and are participating!

Clo
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