Dumb question - Does IC ever affect the kidneys?

[ICLori]

I'm just wondering about that because my creatinine levels jumped from 1.1 (pretty near normal) to 1.3 right about the time I developed IC and at that time I also started developing kidney stones. I felt as if the whole system was ailing - the kidneys all the way to the bladder.

I just found out that 1.3 is considered actual kidney disease for women because our levels of creatinine are supposed to be 1.0 or lower. It's considered early stage kidney disease.

And the last time I got my kidneys checked was a couple of years ago - and I've been taking doxycycline since then which is a nephrotoxic drug (bad for the kidneys) and you aren't supposed to take it with renal insufficiency, but I didn't know and my docs never noticed in my charts that I had a high creatinine level.

So I'm wondering if my kidneys have gotten worse. I am going to be tested soon but I'm sitting here just kind of thinking about things, wondering if the IC made my kidneys go bad just like it made my bladder go bad. Or if there is some underlying autoimmune disease that has caused both things to happen (I do have a high positive ANA test in my records, but I didn't test positive for lupus or rheumatoid arthritis so who knows what it is?)

Oh and ever since my creatinine levels jumped up to 1.3, I've been having problems off and on with high blood pressure. I could tell my blood pressure varied with how much water I was retaining - when I was really puffy, my pressure was especially high. But other times my blood pressure was just fine. I couldn't figure out what was going on.

Well I just read recently (learning about kidney disease now) that even early stage kidney disease like I have can cause blood pressure problems because your kidneys aren't filtering out the fluids like they should all the time.

I took the diuretic they prescribed (it hurt my bladder before so I didn't take it, but I went ahead and tried it these last two days, I just took an Ultram with it to stop the pain) and I lost 5 lbs. in two days and my blood pressure went from 150/95 to 114/78. Pretty big difference, huh?

Wow. Anyone else have this happening to them? Or does anyone else here know stuff about kidney disease? I'm kind of freaked out now that I realize I actually do have kidney disease, I'm not "borderline" like one doctor told me...he was probably thinking about the levels for men which can be much higher than for women...

Blessings,
Lori

[Katrina]

:grouphug: So sorry Lori...:grouphug: All I know is that kidney stones are common in IC patients and there is a reason why but I don't remember it.

[ICNDonna]

I take a diuretic full time with no problem. The one I take is HCTZ (hydrochlorothiazide) and I take 50 mg per day --- mine is for high blood pressure. I do have to control my sodium intake or I can gain five pounds in a day. If I eat ham, I know I will be pounds heavier the following day. I only eat it occasionally and always follow it with drinking lots of water.

I don't know about any connection between IC and kidney problems --- probably because in spite of having what my doctor called severe IC with ulcers, I have never had kidney problems. I also have an extra, partially formed kidney and three ureters (one is inactive).

Hopefully, by catching it early, you'll have the problem controlled soon.

Sending healing thoughts,
Donna

[green_the_fish]

Dang Lori, first the Cytotec stop working for you, now you're showing signs of kidney disease :(

I believe that, in the future, science will prove that IC and kidney disorders are genetically linked. They have already tenatively linked IC, kindey disease, and other disorders together on the gene PAND.
I believe that IC is an autoimmune disease as well.

It's also interesting to note that certain theories on IC, like the chinese medicine theory, teach that IC actually originates in the kidneys.

I have also wondered if all the medications we ICers take could negatively impact our kidneys. I have read that Pyridium, for example, can build up in the kidneys, which is one of the reasons that it shouldn't be taken long-term. Our liver and kidneys do have their work cut out for them!
I know I've tried enough stuff over the past two years that I wouldn't be surprised if my body had a hard time filtering all those meds. And some people have been on meds a lot longer than I have.

This is all just speculation, though. I really don't know how to help you. I'm sorry for all you're going through :grouphug:

[ICLori]

Thank you, everyone! I do kind of feel like I'm just falling apart, body-wise. And sometimes I think I'm just crazy. Why did the cyctotec stop working for me? I don't understand it. Maybe it was all in my head...or maybe the IC is all in my head? Thanks Katrina for the comforting words.

And I get relief from IC symptoms temporarily when I have a bowel movement. Why? That doesn't make any sense to me. Maybe I am crazy and just imagining things. I really doubt my own sanity sometimes.

You know what I just read, though, when I was reading more about kidney disease? I read that one of the symptoms is changes in urination and some of what they described (frequency, but with little production of urine, and a feeling of pressure) sounds an awful lot like some symptoms of IC.

Donna, I've been prescribed the HCTZ, too, same doseage - does that bother your bladder at all? Mine seems to react to it some. But then, my bladder reacts to pretty much every medicine. But if I take an Ultram with it, I'm fine, it covers up the pain. It was awfully nice to finally see my blood pressure come back down to a safe level. I guess I need to be on diuretics from now on, my kidneys just aren't able to get rid of the excess water on their own. That's interesting that you have some duplication in the urinary tract - I have duplication in the reproductive tract - they are formed at the same time. They thought I might also have extra parts in the urinary tract because of that, but I didn't.

Thanks, Green, for the info about how these diseases are genetically linked. I remember reading about how cats that have IC have smaller adrenal glands than normal, and those are attached to the kidneys...I'll have to try to read more about this. I just thought it was weird that all of this would hit me at the same time - IC, kidney disease, kidney stones - I just felt that there must be some connection, in me.

Blessings,
Lori

[green_the_fish]

You're not crazy :grouphug:

You wanna know something weird? Sometimes my IC feels better after a bowel movement, too! Like, if I haven't had a bowel movement in a day or so, and I feel like I need to go... but I'm at school and I don't wanna go in their toilets or I don't have time between classes... that can bother my IC. If my IC was at a 2 before, it might be at a 4 by the end of the school day, and it stays that way until I go. I bet if I go make a post about this, we'll find some other people who have had the same experience.

Wow, I never knew that about the cats before! That's interesting.
The gene PAND (gene map locus 13q22-q32) has been found to play a role in bladder and kindey conditions, panic disorders, mitral valve prolapse, migraines and other serious headaches, and thyroid problems. You can probably find out more by Googling it. Oh, and they also talk about it here: http://en.wikipedia.org/wiki/Interstitial_cystitis#Causes

I believe that science will find a definite connection between all these things that you are experiencing, and that it will eventually lead to a cure.

[tigger_gal]

when my mother wanted to get her bladder removed, she was told that there is a chance that IC can go into the kidneys.. I beleive anything is possible with ic.. I have constant kidney pain, and wouldn't be surprised in the least..

[ICLori]

Thanks, ladies! I sure hope science finds a cure one day. More and more of us are getting this terrible disease - it makes me sad to think of so many people being miserable.

Wow, so my theory isn't so odd....maybe IC does sometimes affect the kidneys! Maybe there are sub-types of IC. Maybe there is an autoimmune IC, an IC from this, an IC from that - and maybe one of the types of IC can affect the kidneys negatively. I did read that autoimmune disease in general (especially lupus) can affect the kidneys and cause kidney failure.

Hmmmm...lots to think about...I sure hope the doctor will say "OK" to cyclosporine-A.....maybe that would help my bladder and maybe it would keep my kidneys from getting worse, too. Although with Cyclosporine-A you do have to worry about acute kidney failure - but that generally goes away once you lower or stop the dose.

Blessings,
Lori

[glenda]

Strange, I feel IC reliefe after a BM too.

Also, I have had an ache in the location of my left kidney for many years, but when I mentioned it to the first uro I saw, he ordered an MRI and IVP which only revealed a couple of tiny stones. I still have the ache in my side, but no definite explanations have been made for it. I reference it all back to a kidney infection that I had when I was small. Maybe it's scar tissue or maybe something more, I just don't know.

I was also just thinking about a visit I had with a naturopathic doctor a couple of years ago who told me that I had damaged tissue of my right kidney, and that it wasn't working to it's full capacity. I couldn't figure this out since I didn't feel any strange discomfort in my right side, (only in my left side). She told me that that can be normal, that some people feel kidney pain on the opposite side from where the problem actually lies. She discribed a particular patient that she new of that had complaints of pain in one side only to find his complete reliefe of that pain by removing the kidney that was located opposite from the side he felt the pain. He couldn't understand how this could be, but for some, this is how it is. Anyway, I thought that was interesting.