Kidney Pain

[IC/IBS Hopeful ICN Member Find all posts View Profile Close IC/IBS Hopeful]

Does any of you have stabbing or kidney pressure pains. If so what is your doctor doing for you and how do you deal with it. Is it only when you have an infection or at other times. I will post more once I hear for you all to see if our treatment is the same. I am having a horrible time with it and need some help to figure out what the issue is. Please let me know what you all think.
Remember I have had my bladder removed and have a ilial conduet. thanks
Lynn

[Mothergoose ICN Member Find all posts View Profile Close Mothergoose]

Yes I too have had trouble with this on and off over the years.

It first started with a kidney infection, the right kidney ached and had stabbing pains in it for over a year after wards. It also at times would feel hot or cold inside me and give me real sharp stabbing pains out of the blue which would nearly knock me to my feet.

It did eventually go away for a few years till I had another bd kidney infection, and it has never fully left since, It was pretty steady for a year or so then on and off for the next 5 years.

It will go away from time to time but the minute my bladder starts to act up at all, it starts to hurt again.

What scares me now is when I have a UTI or a bad flare it has started to hurt in the left kidney too, but that at least goes away after the infection goes away.

I don't think anybody knows for sure what is causing this, I have been told kidney stones, the Main artery feeding the kidney spasming and pressure backing up from my bladder, I have severe urinary retention as well as IC, probably from IC.

So I am sorry to say I have no answer for you, and the only thing I have found to help is pain meds.

So if you find anything out I would be glad to know to give suggestions to my Dr. what it could be.

MG

[IC/IBS Hopeful ICN Member Find all posts View Profile Close IC/IBS Hopeful]

Like I said I am bladderless and have the loop. When it started I thought it was an infection and my urine was positive and I thought okay antibiotics will take care of this it took till day 8 of the Rx before it started to calm down then once the Rx was done bang the sharp pains and pressure returned but I noticed that it was worse if I drank. I found if I drank a glass of water about 30 to 45 min later the sharp pains would start in until I urinated all of what needed to come out, then I would be left with just the pressure. My doctor did a ultra sound and the kidneys are not dilated so we think there is a problem in the loop it's self. He put a catheter in and the kidney pain went away just like that. well because I still had an infection the catheter after 2 weeks began to hurt my insides. We removed it and the kidney pains returned. I now have a catheter back in for 3 weeks along with a strong dosage of antibiotics for 3 weeks to get rid of this infection I have had for well over a month. It has been 2 weeks with the catheter in and this morning the kidney pains started back up again but went away after about 4 hrs. This is where I am at now. Not sure when the cath will be taken out or what we will do if the kidney pains continue. thanks for your info mothergoose I will pass on anything I learn.
Lynn

[Mothergoose ICN Member Find all posts View Profile Close Mothergoose]

I feel for you I spent all last summer with a kidney infection I just could not shake, I tried multiple ab's, I ended up having to go in to our clinic everyday for week and get IV ab's, and IV fluids, while taking oral ab's.

We don't have a hospital here, or else I am sure I would have been put in the hospital.

I started showing signs of it in May and finally at the start of Sept I started to feel better.

But for the most part it was my own fault. I have retention problems and I am told to ab's at first signs of an infection, I also have low immunity, a bad combo to have.

Sometimes it is very hard to tell if it is a flare or an infection, I went with a flare, but it was an infection and by the time I realized my mistake it had spread to my kidneys.

My Dr. was why do you think I give you ab's, to take at the first sign. I have this niggling in the back of my mind if I take too many ab's what happens if I get really sick and they don't work for me any more.

I hope this clears up for you, I don't envy the cath.

Heal soon MG

[Judith56 Support Volunteers Find all posts View Profile Close Judith56]

With ileal loops sometimes they can be a high pressure system. If this is true for yours it could be that pressure is building up in the loop and if you are getting lots of reflux that may possibly be the cause of your pain. I have an internal pouch and I get kidney pains too, though to be fair I have stones, but even before the stones I would get pains even when I did not have an infection. Some days it happens more than others and other days I have none at all. I have just learned to accept them, but if I get to the point where it gets worse and they are constant I will call the doctor.

[Mothergoose ICN Member Find all posts View Profile Close Mothergoose]

Speak of the devil.

I have been having quite a bit of problems with retention lately.

Since March it has gotten much worse, (ironically enough from end of Sept to March was the best it had been in years, this was after my last 3 month long kidney infection cleared up).

I was in total retention a week or so ago and had to go to the ER since then it seems like every 3 days I go into pretty bad retention for about 24 hours, ( I have no clue what is setting it off). Then just before it gets to the point of needing to go to the ER I seem to be able to pass urine and empty out quite a bit, only for it to build up over the next three days, and for the cycle to repeat it self.

I have been in to see my Dr. a few times in the last couple of weeks and email him almost daily. He is Trying to get me into a new uro, my uro whom I loved has had to close his office.

One uro he sent a referral too is about a 4 1/2 drive away and they want me to go there twice before I see the uro, just for a 5 min app to see how much my bladder is retaining, this drive will make me retain, so i need to talk to my Dr. this week to see if I can get the test's done closer to home, but they for what ever reason want it done with just the portable handheld ultrasound that just measure bladder volume. I have called around and none of the hospitals with in a 2 hour drive have this, the hospital that is 2 hours away has a reg ultrasound machine, so I know they can do this test with it, I am going to see if I can get it done there and the results forwarded to the uro.

I don't actually mind making this 2 hour trip, i usually get a friend to go and go shopping while I am there and make a day of it. Our little town has one grocery store, doesn't have much room so he only carries things ever one wants, I can't blame him, but he has no competition so he charges what he can get so it is nice to go to a bigger place that has a few grocery stores and has better prices and selections.

Anyway I wrote in to complain I guess, yesterday after noon I was in pain from retention and was really tired, almost feeling like I am getting a UTI, I can never really tell if it is a flare or a UTI till I am actually quite sick. I have been not feeling great for a few days but I figured it was from the retention.

So I went to bed at about 8 pm, took a vaginal valium and later in the night I was up peeing a few times and not just a dribble a good sign.

Then I woke at 3 am with bladder burning and both of my kidneys in a lot of pain, needless to say I did not get much more sleep last night even with pain meds. I got up at 6 am to get my husbands lunch made for work (I knew last night I should have made it before I went to bed, I feel it is the least I can do for him, he has been work long days and is really tired, last night he got home and I had not cooked any dinner, he never complained, yet I knew he was tired and hungry, he then cooked me scrambled eggs)

He took one look at me and asked if I am going to the walk in today, it is Sat. and there is no walk in. I was in tears this am from the kidney pain, it takes a lot to bring me to tears from pain.

As agreement with my Dr. as soon as retention starts I am to use VV in the am and the pm, which seems to be a lot lately, and keep on top of my pain meds, rest relax and use my heating pad, I do all of this.

I always have AB's at home to start at first sign of infection if I can't get to the Dr.

I figure now from the retention I have another UTI, I am just getting of the yeast infection from the taking the ab's for the last one.

So my debate is do I start the ab's which he has given me and go into see him on Tuesday at my reg scheduled appointment, or do I go to the clinic today and see the nurse, who then will call the Dr. The Dr. could be one that live here or one in the next town. Only one other Dr. knows anything about IC, and the nurses for sure don't know about it. If they test my urine it will for sure be neg. I don't make what the dip test, tests for. I have to have it cultured which they can't do today, they sent them all to a lab in the city.

I deal with this type of thing all the time, but usually it is not quite this painful and I seem to get retention or UTI not both together.

I am leaning to wards taking my Ab's going back to bed see if I can get any sleep, and see how I feel later. The nurse is there till PM and on call all night. I just hate to call anyone out, so i feel I need to make a decision by 4 pm.

I do know if you are genuinely in need they don't mind being called out, but it is a small town and I am friends with the Dr.'s and their families and I just hate to call them on days off.

Anyways I think I answered myself if anyone has any suggestions feel free to let me know.

Part of the problem is I feel somewhat better now, I always do in the am, later I will be wondering why I didn't go in, but then I am not sure what they can do for me unless, I go back into total retention.

Thank for letting me rant this is so frustrating.

MG

[IC/IBS Hopeful ICN Member Find all posts View Profile Close IC/IBS Hopeful]

Hi all
my son graduated last friday. I get out of graduation very hot and thirsty. I went home and could not wait to drink a glass of water. I did and then had 2 more while we were getting ready to leave to go celebrate with some friends. As we were on our way I realized the pain in my left side is getting worse. by habbit I feel to see if I have urine in my bag. no urine. I let a little more time go by and still no urine. we arrive at our friends no urine but horrible pain in my side and back. I go inside and decide to take the catheter I had in my stoma out in hopes it will drain thinking the catheter must be plugged. well I pulled out the cath and no urine came out the stoma at all. the pain was just increasing and we left at that point to go to the local ER. They were able to get another cath in it drained somewhat and ended up draining more over time. They kept me 2 nights to monitor the pain and drainage. Has anyone ever had thier stoma just stop working???? if so please tell me your story. thanks Lynn

[Mothergoose ICN Member Find all posts View Profile Close Mothergoose]

Sorry this happened to you on your sons grad day, my daughters grad day is a fog to me I spent the day in the ER, with what they figured were kidney stones, I din't want any strong pain meds as I had to get up and give a speach that night, they gave a few shots of something which didn't help, and Demerol to take after I had given the speach.

It is just so hard when we miss these miles stoones in our kids lives.

I do feel sorry for you. I don't know anything about the stoma, I am still plumb as nature made me, but it is not working I was within a hair of being in total retention again today, last time was just a couple of weeks ago.

Not sure how long I will be keeping this bladder anymore.

hugs MG

[Judith56 Support Volunteers Find all posts View Profile Close Judith56]

I Lynn, no mine has only stopped when I still had my ileal conduit. It did not drain properly, they had discovered the whole thing was poorly constructed and the conduit was not actively moving the urine along the tract. I had a revision done and then at a later date converted over to my continent pouch. Is the pain better now?