View Full Version : Kidney stones and kidney issues

05-16-2010, 02:24 AM
Hi all. Miss my whl buddies, but have been really sick. Had a 6 mm stone that wouldn't move, got stuck in between the kidney and bladder. I had an emergency visit and was "given" a urologist (I didn't get to pick a doc) that is gruff, doesn't care to hear about anything about autoimmunity, just your typical over all lousy experience. They said the kidney has swelling and I'd HAVE to have the surgery. They went in and broke it up this week, put a stent in, told me that i'd still be passing fragments, and visit them in two weeks to have the stent removed. Unless I'm running a 101 degree fever, unusual bleeding or pain, or have trouble urinating, according to them I'm dandy and shouldn't call the doctor. Tell me if you've heard this one before...I'm supposed to just go through this like everyone else...When I didn't, he didn't seem to care, and his NA just kept talking to me in this tone of disbelief because I'm "not supposed to be having any problems like this." I kept bringing up I have MCTD, before and after surgery, and tried to explain that I rarely ever go through something like everyone else, but they didn't hear a word I said. Except one nurse and the ER...and I really missed the er after they admitted me.

I didn't get to go right home after the surgery because I had the worst bladder spasms. For a while we didn't know what it was. One nurse finally got a different doc on the phone and he suggested that was the cause of my misery and it was. They gave me something for it and that was so much better! I got to go home soon after that. So I go home the night after the surgery. I felt rough for a couple of days. I was feeling a little better yesterday but last night I felt chills, flank pain, the ibs went up a big uncontrollable notch, and felt so weak. I drank more water anyway, I took my Cipro and went to bed, finally slept for a little while...and woke up feeling like I've been sleeping in a sauna and feeling so worn out, but better than earlier.

My guess is the stone fragments may have been moving around although I never felt that bad when the solid stones moved around. (this makes stone number 4, but this was the first i couldn't pass) I never had chills or felt weak before. Just flank pain from hell and the ibs was crazier than usual. I cannot eat anything it seems but toast. Everything else makes my gut sound like ww3 is going on and the pain that comes with that is awful. Even my pain pills are intolerable to my gut. My diet has been in trouble for months now and now it's worse. Anyone else go through bowel trouble with kidney stones or kidney trouble? i can find nothing on the net about it but ever since the kidney problems have been troubling me more, i can't eat much of anything without the ibs going up a notch and none of my ibs meds can control it. I still haven't found a GI doc yet. I keep losing weight without any exercise. I feel like I've spent more time in bed the past 3.5 months than I have in my whole life. I lost 23 lbs in three months. Which, if I felt better and could eat better, I'd be thrilled about.

I also need some advice about the doctor thing. I'm thinking I need another doctor. This guy is an ass and scares me. I don't want to go back to this urologist's office later to get the stent removed. But I wonder if I can do that since he's the one that treated me and is supposedly still treating me. Can you change doctors in the midst of a procedure like this? Will I run into another urologist who will say "You can't do that." or will my insurance have a fit about it and say no? Has anyone else done that before, when you've had surgery done, change to another doctor? I really don't care to see this guy again. But I also worry if I could pick another one, will that doc also be an ass. This is so frustrating!

05-16-2010, 12:04 PM
Wow, Abbasgirl, sounds like they've put you through the wringer!

I've (thankfully) not had any of the issues that you've described, but they sound just awful. I hope you're able to change doctors to one that that his an idea of what autoimmune issues are and what those stones can do to someone with your medical history.


05-16-2010, 12:21 PM
Hi Abbasgirl,
You were missed here! It sounds like you had a really rough time with all of that. It seems that you should be able to refuse to see that doc again, but I don't know how your insurance would take it. Would it be possible to have a consult with your PCP or your rheumy on this? Perhaps the urologist would believe what you were trying to tell him if he gets a friendly reminder from one of them.
My daughter just dealt with kidney stones while she was pregnant, and it made her pregnancy miserable. They couldn't treat her to get rid of them until after the baby was born. They were able to break hers up with ultrasound, but she was miserable and couldn't stand to lift the little guy for a few days afterward.
I hope that you feel better soon.
Gentle Hugs,

05-17-2010, 09:21 PM
Hi BonusMom. I hope you're doing well. Thanks for the hugs. I'm sorry I haven't been keeping up with ya'll well lately. I miss my whl pals.

Marla, I hadn't thought to ask if my rheumy could talk to the urologist about it.That's a good idea. I dread getting the stent removed, but hubby is thinking we should look into finding some other urologist that will do it instead. We're not sure yet. We know it needs to come out sometime around 2 week's time so at least there's time to consider what to do. I hated having a specialist picked for me by the hospital. I understand it was an emergency but he and his NA were so awful. He just simply didn't care. The NA never heard a word I said and later was freaking out why I was in such agony... "Why are you having such a hard time? This is strange! You should be fine." Meanwhile I'm in agony while she's going on and on. She wouldn't stop freaking out about it and asking me over and over, that I lost it a little and told her off..."I DON'T KNOW! I TOLD YOU, I have autoimmune disease and there's always something strange going on. Would you please stop talking to me like that?!" Of course she heard me that time but said the ai disease should have nothing to do with this. UGH! I just gave up. The nurse that had been caring for me at least knew to call another urologist and he suggested it was spasms and prescribed some meds for me, but the NA wouldn't even listen to her that I had just taken the drugs and it will take a moment to see if they help. Which they did thankfully.

I'm so tired of finding bad medical care, you know?! I had a nice break from that. Stupid kidney stone!

I've found others online complaining that stents aren't always so simple for them to endure either. Lots of people get really bad pain from them and/or infections due to them. And I've learned that I HAVE to rest more than usual whether I like it or not. All I did was stay in the sitting up position a little too long this morning and I was miserable all over again. I rest, rest, rest, and will feel a little better. But I can't be very mobile or sit up too long for some reason. I can't lay on the side the stent is on for long or on my back, I have to stay mostly on m left side and that eases some of the pressure I feel on my kidney for some reason. Why that is I don't know but it's the only thing that's working for me right now. Ugh, this is hard. BUT I haven't had any more fever and chills, thank You God!

Your poor daughter! What a time to go through such a horrid experience. Kidney stones are so awful.

Did you know sjogren's can cause them? That was news to me.

Thanks for the hugs. (((Hugs))) back.

05-25-2010, 01:25 PM
hi leslie,

i saw your note that you were off to the er again this morning....i hope everything is ok. I will try again to call you later, need to keep a check on you.

i have a urologist in atlanta, but i am not competely happy with her....however, i do know for a fact that dr. kim will talk with your urologist, or even recommend another one for you....however, it would probably require you traveling to atlanta....you deserve to find some decent medical care closer to your home....

hope you are ok...i will check on you.

05-26-2010, 10:39 AM
Hi Abbasgirl;
I am so sorry to hear that you've been having such a horrible time with the kidney stones and uncaring doctors. I know that you and your husband discussed finding another urologist to remove your stint, have you done that yet? I do hope that you are able to find one who will listen to you, believe you, and do what is best for YOUR health!
Please let us know how you are and what decisions you've made. I am keeping you in my prayers!

Peace and Blessings

05-30-2010, 09:27 AM
I am so sorry to hear about all that you are going through. My grandaughters boyfriend suffers from a certain type of rhumetoid artherist that produces kidney stones all the time. He is all crippled up in his joints from this and is in a great deal of pain when this stones present themselves. His stomache is so messed up from the meds he takes also. But when they put a stent in him they kept it in too long and he got a massive infection and the doctor was not as caring as he should of been so they got another one. My grandaughter is graduating from nursing school this month and helps him with all of this especially when they had to put drain tubes in his kidneys through his back. This poor boy is only 23 years old and has a 6 year old son. But he is a good person and suffers alot. I hope you find a more caring and compassionate doctor they are out there. Love Bonita

05-30-2010, 07:23 PM
hey les....

how are you feeling?

i tried to call, but could not get through...give me a call when you can.