Had litho, still have pain and I can't get a doc to listen! Help?

I'm usually on the Crohn's Disease forum (dx '98) but I'm here because I am having trouble with my kidney and bladder. I've had so many stones in the last 12 years, I can't keep up with them. I just had lithotripsy a week ago. This was my 3rd time in just less than 3 years. I've had a total of 6 lithotripsy treatments altogether.

Here's my problem... I don't have that sharp pain in my kidney like when a stone is trying to pass but I have that pressure, that 'fullness' feeling. It's wearing me down! I've had much worse pain but it's constant so I just want some relief! It's just like the pressure feeling I get when I have a stone but without the sharp pain of my kidney trying to push the stone out (if that makes sense). And since a day or two after litho, I started having urgency problems. It's getting worse. I go to the bathroom, wash my hands, and feel like I have to go back to the toilet! I can't sleep more than 2-3 hours without the urge waking me up. And during the day, I try to wait as long as I can to go to the restroom but it's never more than 45 min to an hour before I'm about to die. I have to make myself wait because I feel like I have to go although I know it's not possible.

And since I had my litho, I haven't passed any sand/stone fragments. This is not normal for me. I'm drinking about a gallon a day and my husband is doing the percussion on my back - but still, nothing.

The urologist is a complete idiot. I called to let them know what was going on and they made an appt. I got there, and he wasn't even in the office. I had to see the nurse (although I'm not sure she was truly a nurse). They are checking to see if I had a UTI but I know it's not - there's no pain with urination, but they gave me Bactrim just in case. When I asked to have something to help control the feeling of urgency and always having to go, she told me there was nothing. Bull. The times I've had stents I'd been given those kinds of meds. I hoped that after taking a day and a half worth of the antibiotic, I'd feel better. But I don't. So I called back today and all but lost it when they once again told me there was no meds for the urgency/having to go. Finally they are calling me in some meds but I'm not going to go back to that doc.

So now I need to find another doc. But I also would like an idea of what could be wrong. I understand that I probably have a clump of the stone remnants in my bladder or still in my kidney. However, I still have a gut feeling that something else is going on. I've had so many lithos that I am concerned there may be damage or that I've had so many stones there may be scar tissue. Or for that matter, it could be something completely different.

Any ideas? Everyone on Healingwell is so awesome in giving advice. I should have written and asked this a few days ago. Thanks for your help!!


PS The only thing my doc's office told me is to exercise. What? I teach dance lessons to kids. I don't now how much more I can do! :P But right now, I can't be far away from the bathroom!

I know these posts are a few weeks old but I felt the need to respond anyway just in case :)

AuburnByrd - I have IBD too (undetermined type but I believe it to be Crohns) and calcium oxalate stones known as Randalls Plaque Disease. Im sorry you're going through this nightmare. I definetly think you need a new doctor. Any kidney problems is certainly nothing to joke about...neither is pain! So you need to find a doctor who will take your problems seriously. Uraxatrol helped me with urine flow (its actually for men for prostate problems, but it can also help females with urinary problems/stones). Those with IBD are more suseptible to kidney stone formation due to the constant dehydration IBD often causes and obvious decreased urine output/urine concentration as a result of the dehydration. It would be beneficial for you to find a doctor who would be able to (if I'm understanding correctly that you have Crohns as well) understand the complexity of Crohns and the problems it can cause to your renal system. In addition, you have mentioned that you have had several lithotripsies. Have they been successful to remove stones? I ask because mine wasnt (because I have Randalls Plaque which makes lithotripsy unsuccessful), so if not the next step may be to preform a Ureteroscopy which would also show any possible ureter obstruction or ureter abnormalities such as kinking in the ureter...which could be causing your symptoms. I wish you the best of luck and certainly am hoping you've found some relief since your post. Let us know!

SickOfIt74- As your post is old, it is likely your finance has already had his lithotripsy. But I felt I should answer your questions just in case or for anyone else with similar questions. For me, the lithotripsy did cause a lot of bruising on the side it was preformed. Which then caused pain for about a week or so after the procedure. I did not have a stent put in at that time, but later would after a Ureteroscopy. The stent (which is a tiny tube with two ends that are curved, one end curves in your kidney and one in curves in your bladder to keep the ureter open) is what causes the most pain, but it is important to ensure the ureter from not inflamming and help the stone fragments (especially for such a large stone as your fiance has) to pass. Some people do not have pain with stents, but I did as my body likes to reject them and bleed a whole lot. In my case, I didn't really get out of bed the entire time I had it in (5 days both times). Some stents can be kept in for much longer, in which case it is my understanding that they usually don't cause too many problems and the person would be able to go about their daily lives for months or even years with a stent in place. There are medications which can help with stent pain and the feeling like always needing to urinate they generally cause, so its important to discuss these medications with the Urologist to minimize symptoms. I hope your finance is doing well.