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Posted 9/9/2022 8:09 PM (GMT -8)
Clo the stent is done when it's an emergency and stone is blocking the ureter
Once my Doc knew I was chronic with stones he has me getting sonogram every 6 months
Just had sound wave procedure a month ago
Was only 1 stone but Dr said it would not pass so since I was going to Dominican Republic last week I wanted procedure done before I left
When I had stent it was removed 2 different ways
String thru penis that Dr just pulls out 1-2-3. Didn't hurt though I thought my life would end(Female nurse said she has seen biggest macho men worry like a baby- that includes me)
Other one is Dr insert a tool to pull stent out
Neither hurt. Both done in 10 seconds or less
Posted 9/9/2022 11:51 PM (GMT -8)
3x,
I'm a wimp. My spouse keeps telling me that it's much more painful for men according to his buddies...

How soon after your first surgery did you develop new stones? This guy just told me that since I've developed one I would probably develop more and to come see him when I do.

I'll go back in on Monday to get results from imaging and ask if he wants me to have imaging periodically. The ER doc said she I have some ulcerated areas that are healing. She repeatedly asked if I was allergic to plastic, rubber... Stuff like that... While she was watching the sonogram being done. She also said that according to the records I had a raging infection when the stent was done. (Hmmm...but the urologist/surgeon did not give me antibiotics after surgery....) So I dunno. She said it looked like everything was healing and I wasn't complaining of UTI symptoms so she didn't see a need for antibiotics and to call her if I started feeling UTI symptoms.

Of course none of these docs are my usual docs. They could be..... Well not so good.... And I probably wouldn't know if it until after.....

Clo
Posted 9/10/2022 12:03 PM (GMT -8)
Had 3rd colorectal surgery August 2018. First incident(horrible pain. Went to ER at 4 in morning) with stones was Nov 2019. Since it's been once a year. Stopped any nuts,chocolate etc. Iced tea is my weakness. Just drink much more water then ever
Posted 9/14/2022 5:17 PM (GMT -8)
How are you doing now, clo?
Posted 9/15/2022 12:59 AM (GMT -8)
I am not sure. I seem to be having a lot of times where I feel like I have to pee... But I really don't have to. I'm calling my urogynecologist in the morning. Maybe I have another UTI.

I finally stopped peeing blood. So that's good. But I also get these little pieces "caught" while trying to urinate and it's uncomfortable. Almost like little stones--but the surgeon said that he got most of them out during surgery. So I am unsure.

Plus I am balancing right on the 3dge of a flare. I can feel it...and smell it... Does anyone else have a "smell" in their output and sweat when in a flare,?

Remicade is in a week so hoping that helps.

Clo
Posted 9/15/2022 11:17 AM (GMT -8)
That sucks, I'm sorry. I had that smell thing when I first got UC. I felt like I could smell it through my breath or something, not quite sure, it was odd.
Posted 9/15/2022 7:45 PM (GMT -8)
Yep. I can smell it. When I first became I'll I kept telling my doctor's I could smell rotting meat. They thought I was crazy until the fistula broke thru..then suddenly it was... Yeah well sometimes people believe they can smell their flares. ( Like I was a crazy person. So I just stopped telling them that )

Now .. I can smell rotten meat. It's like the smell is getting stronger every day. That darn surgery. Remicade can not come fast enough.

In the past I prayed I would never have to use Remicade, now I pray that I can last until the next infusion and that it doesn't stop working for me. What a 180.

Clo
Posted 9/15/2022 7:54 PM (GMT -8)
I know what you mean. I once was so scared of any of the biologics or meds like Xeljanz. Now I'm so glad I found one that works for me and hope it lasts as long as possible.
Posted 9/16/2022 1:01 PM (GMT -8)
There’s been times lately that my urine has smelled strong but (knock on wood, cross finger & toes) so far I haven’t had a UTI since starting the raloxifene and estrogen cream.

Hope you feel better soon!
Posted 9/17/2022 6:23 PM (GMT -8)
Flowers Gal,
I don't know if I can put the brand names in here that I use or not......

My eurogynocologist told me to use Ellura, a cranberry supplement that has 36 PAKS in it that is made out of the juice--not the whole berry. She also told me to take at least 1.5 grams of powdered D-Mannose daily.... Along with the estrogen cream of one half to three quarters gram every other day. Some people are able to make due with just the powdered D-Mannose twice a day. Others the cranberry capsules. For me there is a HUGE difference when I use the cranberry capsules made out of only cranberry juice with 36 PAKS. It's expensive though. But if you only have to use the cranberry occasionally and you can make do with the D-Mannose it would cost less.

Just some thoughts.

Remicade this Wednesday....

Clo
Posted 9/18/2022 1:13 PM (GMT -8)
Wow that is expensive! But worth it if it works! I looked it up on Amazon and beneath it a “CranEaze” popped. Claims it has the same ingredient and strength and also has d-mannose. I might give that a try. I’ve been using the Costco brand but I know I got a UTI while taking it so it’s obviously not that effective. So far so good with the estrogen cream though. Although I often forget which day I’m on so miss doses. 😳

Thanks for the info!!!!

Good luck with your infusion. Hope it makes you feel better (after you first feel worse. If I remember right it puts you down for a day or two).
Posted 1/4/2023 5:05 AM (GMT -8)
Hi everyone. I had colitis for 6 years. And 7 months after I got diagnosed and started mesalamine and prednisone I had my first attack. The pain like giving birth. Nothing worse. The doctor said it was sand. Then I started getting one every 7 months. But this already happens with bloody urine. Then it becomes normal again. Doctors keep saying it’s just sand but it’s awful and super painful, to the point where I can’t breath normally. The y once found a small stone and gave me cranberry pills for kidneys. That’s it.
Posted 1/4/2023 8:27 AM (GMT -8)
Anas. I had colon removed in 2018. Since then I've had frequent stone attacks. Pain is incredible.
If stone is big enough they do a procedure/surgery to remove it. Sand imo would be something small. I have seen every stone size bc Dr sends me for Cat Scan or sometimes Sonogram. Mine are usually on the large size unfortunately. I'm having the stent procedure done on Jan 27(they brake up stone with laser). Does Dr send you for Cat Scan or Sonogram??
Posted 1/4/2023 1:10 PM (GMT -8)
Anastasia,
That sounds painful! I think I would ask my urologist if there's a special diet you need to be on to help... Although many of my friends have said diet didn't matter with their formation of recurring kidney stones. If you haven't gotten a scan to confirm stones I'd talk to the urologist about getting that asap. When 3x posted that he about passed out from the pain I remember I thought how bad can it be? And then one day I was falling of the toilet almost passing out.... Awful.

3X,

Yikes!!!!! Wow you are a kidney stone producing machine! No offense meant. They couldn't do the sound waves? I'll be saying extra prayers for you. Please let us know how it goes.

I've had another image done and the imaging company keeps seeing shadows on my left kidney. Apparently that shadow was there after... But not before... They lasered the kidney stone. They think it's a remaining fragment over 1mm. The urologist keeps saying he doesn't see it. This week... I got that scraping going thru the tube feeling I got last time... But so far nothing has come out. 🥴. So I sorta feel like I have a UTI coming on.. but I think it's that fragment.

FlowersGal,
I've actually upped the Estrogen cream from half a gram every other day to 3/4 gram every other day. Then a friend called and said that estrogen helps with osteoporosis. I've been wondering if I should ask my PCP to add the pills to the cream mixture. I have started struggling with joint pain in my shoulders and feet. Gosh I'm just falling apart in some ways...but the cream, dmannose and cranberry pills make me better but not quite all the way. I feel like I am just on the edge of a UTI....

I wonder if that stone fragment is making me feel that way or if I need more estrogen cream....hmmmm. Thoughts?

Clo

Post Edited (clo2014) : 1/4/2023 1:15:22 PM (GMT-8)

Posted 1/4/2023 1:42 PM (GMT -8)
Clo. I mentioned to my Dr that after last sound wave procedure(summer 22) I got a feeling bunch of times in same spot on left side where pain usually is. Mostly in morning and nothing horrible. Like a soreness. So he wonders if sound wave broke up stone enough???. Not sure if they cleared all stones out?? Really have to tighten up my diet. Less salt more water and more water. Less foods with oxalates. Can't go on having these procedures done often. Wonder when Kidney might get damaged???? Like I said I have seen every stone on image in Dr office. It shows up very white in the kidney. This one is a big one. Going to Aruba Friday so Dr gave me heavy duty pain killers to take with me just in case. He said it shouldn't move. Let's hope not

Post Edited (3timechamp) : 1/4/2023 5:02:25 PM (GMT-8)

Posted 1/5/2023 4:25 PM (GMT -8)
Clo — re estrogen and osteoporosis. I’ve a friend who has osteoporosis and has been on just about every med for it there is. She last had an injection (yearly or biannually?) but stopped those when she had to have a tooth implant. She’s now on an estrogen patch for her osteoporosis. I think she just wanted to give it a try and it seems to be working. She’s been doing that for a couple years now. The patch is not as systemic of course so less chance of breast cancer. I’m taking raloxifene which is synthetic estrogen for uti prevention. I’m taking that every other day and still using the estrogen cream. So far no more uti since I started that regime. I also take a cranberry supplement daily. Costco brand but I checked and it has the same strength and ingredient as yours. I do know what you mean about feeling on the verge — I always feel that the first few days after a antibiotic course for uti.
Posted 1/6/2023 9:18 PM (GMT -8)
FlowersGal,

Is the Costco cranberry supplement cost less than the Ellura? That stuff is costing me a fortune! If it is I think I will give Costcos a try.

On the Powdered Dmannose. I was able to find a cheaper brand that still works for me.

I did reach out to my euro gynecologist today to ask if we should add something else to our mix. I take a half gram of the cream every other day---and by the time I take it 48 hours later I feel like I'm going to have a mini UTI. It's frustrating. I've asked to go up to a gram every other day and to add something else.

I'm very disappointed that my rheumatologist didn't suggest estrogen for my osteoarthritis in 2014. I spoke to 2 of my older sisters... (87 and 78) and they've both been on estrogen for 10 or 15 years now. And they haven't had any UTIs...or any issues. Plus their osteoarthritis isn't as bad as mine is....

3X,

I haven't heard that having the procedure is harmful... But I too would be concerned. I haven't had tea since they diagnosed me with a stone. The urologist said to stay away from that... And salt. Now I crave salt. I could make a meal out of a glass of tea and a salt shaker.

On the laser breaking up the stone....my last images showed a shadow. It was there a few days after surgery also. The radiologist said it was a portion of the stone that didn't break up. The urologist swears he can't see it sigh . This week I have felt that feeling of a sharp pointy object traveling when I go pee. I'm trying to get in to another urologist for a second opinion. So far they are booked til May.

I hope you vacation goes well. Don't fall down or jar your body--thats how I knocked mine loose....

Please let us know how it goes. I'll be keeping you in my thoughts and prayers. Stone pain is worse than natural childbirth for me so I feel for you.

Stay safe and healthy!

Clo
Posted 1/13/2023 7:06 PM (GMT -8)
Ok.... I spoke to my urogyncologist about increasing the cream to 1 gram every other day. At that dosage I don't feel like a UTI is coming on. She said I could increase it but she does not write scripts for any more than I am currently taking... especially for people on biologics. What???? So I would have to check with my PCP and see what he thought.

Today I checked with PCP and he said I could increase it but he would not recommend it. I'd have to sign a waiver indicating the risk had been thoroughly explained to me and I accepted all the risks before he'd write a script for more. Aaaaggghhh. Instead he wants me to up my cranberry supplements back up to 2 a day and increase my Dmannose powder back up to 6 or 8 grams a day. He thinks that's safer.... So now my cranberry pill bill aline is gonna be 115. Every 45 days... 😭... Plus the Dmannose powder and the script. This is so expensive!! Insurance refuses to cover supplements even with a doctor's prescription. 😈👿👿

And the PCP saw the fragment of the stone... More like 2mm plus. But the good news is I should be able to pass it myself....the bad news is it's gonna hurt ...

AND.... No Norco... He's sending me to a pain management place to prepare. Aggghhh!!! ER here I come when it starts down the tube!!!

How do the rest of you get pain meds? I've always refused them before the stone... (Then I was begging for them and they were prescribing 5 at a time.....geez...and I used all those.) So now unsure how to proceed or with whom?

Clo

Clo
Posted 1/14/2023 10:27 AM (GMT -8)
Clo do check out Costco for the cranberry. It’s TruNature brand and less than $30 for 180 capsules. Might have a coupon this month through the 22nd.

Ingredients: cranberry proprietary blend 650 mg (standardized to 36 mg cranberry proanthocyanidins (cPACs))
Pacran whole cranberry fruit powder 500 mg, cranberry fruit extract 150 mg.
Posted 1/14/2023 11:50 AM (GMT -8)
With all your insane medical issues, no doctor will give you pain meds?! That's ludicrous.
Posted 1/14/2023 9:24 PM (GMT -8)
It the opioids. They make you go thru the pain management team before your opioid drugs are prescribed.

They will give me Tramadol for my knees. No norco...so far. UTI they are telling me Tylenol... And if that doesn't work go to ER.

What's wrong with these people? I'm going to go see my knee surgeon and my arthritis doctor this month. Maybe I'll get something that I can use multi purpose. The tramadol does not work that well and it gives me these awake nightmares. They are scary and seem real.

I am going to go into Costco and take a look see. That's a much better price.

Cross your fingers for me guys.

Clo
Posted 1/14/2023 9:39 PM (GMT -8)
Tramadol messes with my dreams/sleep, too. Ive had a lot of nightmares like that so i understand. Yeah, it definitely isn't very strong. Hope you can get what you need for some relief.
Posted 1/17/2023 7:14 PM (GMT -8)
Ok, I didn't find the Cranberry at the store.... It's probably online.... but I don't have the membership. I went with a friend who has one. I'll have to try again another time.

Clo....
Posted 1/18/2023 7:39 AM (GMT -8)
Clo Maybe your friend would order the cranberry for you from Costco.com? 2 day delivery for $22. I checked and Amazon has them also — for $50 but it looks like you get 2 bottles for that price.
Posted 1/18/2023 7:50 PM (GMT -8)
FlowersGal,

I found it at Walmart.. It was a little over 50.00 for 2. I'm probably going to just order it from them.... My friend was a PITA and there is no way I'll ask her to go in on her card again. Shes a very anxious person (which I hadn't noticed before,) and she was very uncomfortable with anyone buying anything off of her card... They should get their own card. I just don't know if Costco is a good deal for me. The closest one is over 40 miles away. I buy locally - my 4 farm neighbors take care of most my meat, milk, cream, eggs, and veges. They are organic and I can see what they are doing so I feel good buying from them... (Although I gotta admit I don't want to eat the animals I've made friends with... Just the thought had me eating salads for a month.) So I probably won't get the card and I'll just shop online. I'll check Amazon before I order. Thanks for the heads-up!

Thanks Sara... It's good to know that I'm not the only one that Tramadol doesn't seem to work very well for.

Clo
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