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Dx'd w IC yesterday - "kidney stone attack" last month

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  • Dx'd w IC yesterday - "kidney stone attack" last month

    Hello all,

    I'll give a little background.. lupus, crohn's & ankylosing spondylitis are all present in my family. I developed an allergy to life in general around March of last year - during a time of some of the highest stress I've ever been under. Had dermatographism, hives on the outside (and inside!) of my entire body, went into anaphylactic shock 3 times & had to have ER treatment. Eyes swelling shut, tongue itching constantly, was diagnosed with asthma (which I'd NEVER had) and after being tested for every common food in the American diet, I showed as allergic (3+) to every single one of them. The skin allergy test pretty much turned my back into one indistinguishable hive. The allergist was at a loss and I was pretty much told to subsist on rice & water (just about the only things I could eat!). Oh, and don't breathe bc I was highly allergic to every single tree & type of dust/mold that exists.

    I went to a naturopath who suggested I go on a type of cleanse eating only kefir & berries for a while. It worked. She felt my gut was out of balance & it had microscopic tears, allowing my food to enter my blood stream which was of course causing my body to attack it. Within about two months, I was able to eat regular foods again, the "asthma" (my lungs were inflamed & filled w fluid from leaking mast cells) subsided, and I was pretty much back to normal. About two months later in August of last year, I developed a terrible kidney infection. The urine WBC count came back as TNTC (Too Numerous To Count) and I had terrible right-side flank pain. Kidney infection. A CT scan revealed a tiny 1mm stone, as well.

    The kidney infection resolved with IV meds but the right-side pain did not. It has stayed with me ever since. There are times when it goes away for a half a day but it's present every day. I thought it was from the stone, and maybe my kidney would just be "angry" for the rest of my life from the infection. Last month, in late June, I thought I might be getting another UTI. I thought I'd let it go a few days and drink cranberry juice, as sometimes before my period I get really uncomfortable weird symptoms related to peeing and they always go away. Waiting didn't work, and about two days later I developed a fever and worsening pain. By the evening, the fever was so high I wasn't thinking straight, but the pain was so bad I couldn't move or be touched. It felt like labor. Not in the vaginal area, but my entire torso was contracting & spasming. It wasn't one-sided either, it was my entire back, stomach, from ribs to hips. I had to get up to pee a few times and while there was some blood in my urine, there was no more or different pain associating with peeing, than there was when I was just sitting there trying not to die. It was unbearable & my boyfriend tried to talk me to going to the ER but I was in too much pain to move. I remember thinking "if I wake up in the morning, I'll go to the ER then..." (I think the pain & fever had me a little delerious bc that is a STUPID thought!). When I finally fell asleep/passed out, I woke up the next morning and felt FINE. F.I.N.E. .. the usual kidney ache, a bit of blood in the urine, but fever was gone, and excruciating pain was gone. I thought I was in the twilight zone!

    I went to Urgent Care that evening, because I was still feeling the "usual" UTI symptoms - urgency, uncomfortable, burning, etc. Plus, the whole episode was just so strange and I wanted to know what happened. Knowing I had a kidney stone, they thought I'd had a kidney stone attack. The pain I felt is called Renal Colic, and a dip test showed a UTI so they put me on antibiotics and had me follow up w a urologist.

    That leads me to now.. a CT scan showed the kidney stone has grown to 3mm and hasn't moved AT ALL since last August. Plus it's so tiny, I would likely not have much pain at all when it passes anyway. With the other symptoms I've had for a year (right flank pain, I can't make it 2hrs without peeing, pain that is much worse if I have even 1 drink of alcohol or don't stay over-hydrated) he did the cystoscopy (OWWWW) and is nearly positive I have IC. I had strong bladder pain just from the procedure with the camera, and spasming pains for the rest of the day. I'm going in for the inflation procedure under anesthesia on 22 Aug, but I have all the symptoms.

    My question now is, when you have IC can it cause an "attack" such as the symptoms I had last month? The only time I've felt pain like that was during natural childbirth, and it was every bit as bad, if not worse. I mean, how could I have had a kidney stone attack (which happens when one dislodges and either moves or gets passed) if the kidney stone hasn't budged?? Over the next week or so after that horrible attack, the burning, urgency, aching (esp in the morning, my kidneys ache the worst first thing in the mornings) subsided to their usual, more manageable levels.

    Also, the opening on the r-side of my bladder leading to my kidney is more like a "long slit" than a "tiny hole" as the urologist put it. So, it's constantly backwashing into the R kidney, which is was created the stone. This is the side that always aches. Do you know if the r-sided aching (the left hurts sometimes too, but it's a different ache than the right) is related to IC or to the urine backwash thing? And, are kidney stones more common in IC? I'm only 29 -- pretty young to have a stone at all.

    Thanks, and I guess I'll be around :-\


  • #2
    Hi Ivy, I can't answer all of your questions, but can comment on a few areas. First of all, welcome to the board! Sorry to hear that you (likely) have IC.

    Let me start by saying I don't have kidney stones, but I always experience right sided flank (kidney) pain when I have a flare. If the flare lasts 3 weeks, so does the kidney pain! And I have the same type of spasms you talked about. Often at night when I lay down in bed, my low back/bladder spasm so bad that I writhe around in pain trying to find a comfortable position (there isn't one). Then I do deep breathing and try to wait for the immediate spasm to pass, and wait for my sleep meds to kick in so I can fall asleep.

    As far as the allergies - my goodness. Thankfully you found the naturopath. Have you seen them about your bladder recently? Just wondering what they would say.

    With IC, cranberry juice is evil. This may be causing some of your problems if you're still drinking it. You'll want to look at the IC diet and follow it religiously, trying to find which foods bother you. Eventually you and your dr. will work to find the best combination of meds to help your symptoms as well.

    Best of luck, you've got a lot to learn but you're in the right place!
    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

    Elmiron 3x day
    Trazadone at bedtime
    Tramadol as needed for pain
    Monthly B-12 injections
    Continuous Birth Control (even though I had a hyst, to control cysts)
    heating pad, hot epsom salt baths, strict IC diet
    Interstim implant 9/11
    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

    Failed Bladder Treatments
    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching


    • #3
      I, too, have right side kidney pain

      Hi Ivy,

      Let me start by saying that I have not yet been diagnosed with IC, but am seeing a urologist and am on the IC diet-- I hope to have the hydro w/distention soon so that I will know what I'm dealing with.

      I had an "attack" similar to what you described, only no where near as painful. The interesting thing is that I drank a ton of cranberry juice the night of the "attack" since I was trying to head off what I recognized as a possible UTI. I was in a lot of pain, having spasms, was up all night, could not find a comfortable position to lie in, etc. I went to the Dr. the next day and a UTI was confirmed, and a kidney infection also. I do have kidney stones but they are very small and a CT scan showed they are not obstructive. Whether they moved or not, I don't know. Funny thing is, they are in my LEFT kidney, not the right where I have all the pain. At any rate, my theory is that the cranberry juice really damaged my already vulnerable bladder. I am not saying it caused my possible IC, (because looking back I started with some symptoms a year or two earlier) but I do think it was a major contributor to how bad my bladder is feeling now.

      There are times when my right flank does not hurt and times when it hurts a lot. Usually it is in conjunction with lower back pain that rises up into the flank. I am not sure why this is, but I know I do not have an infection. (All urine cultures have been negative since I was treated for the initial UTI mentioned above.) I wonder if it's inflammation that travels up to the kidney? Or "just" the pain that radiates there? I don't know...

      Take care.
      very mild symptoms since at least Jan. 2010
      (But wonder if I've had it longer due to some signs, looking back...)
      painful symptoms since Feb. 2011
      diagnosed with IC Aug. 2011

      Medications: Elmiron, Elavil


      • #4
        Very interesting. I've actually considered pounding some cranberry juice again just to see if I can provoke another attack.

        I mentioned the allergy history bc I kind of believe the allergy stuff was the kickstart to this IC issue. It's also apparently autoimmune.. mast cells leaking in the bladder wall.. I think once my immune system got halfway back to normal, the damage was already done and it sort of "settled" into my bladder.

        I could not imagine having that severe pain on a daily basis. It hurt so terribly that I preferred to lay still than go to the hospital. Even though I was wondering if I was dying, that was preferable to moving. I even tried to breathe as little as possible. I thought this condition just caused bladder pain, but it sounds like I may not be the only one who went into full renal colic from an attack. The pain I have daily is uncomfortable and prevents me from doing some things (jumping on the trampoline w kids, have to be careful giving me a back massage etc) but it isn't paralyzing.

        I'm glad this forum is here. Since finding this out, I'm walking around wanting to tell people hey, did you know I just found that the inside of my bladder is basically leaking and peeling all the time, and eating itself from the inside out?

        I'm thinking of just describing it as "Crohn's of the bladder" ... It's crummy news to get, and not exactly the kind you can share.


        • #5
          I can't even guess what's going on with your body. I do think it's good that you are working with a urologist to find an answer to your bladder problem. My IC was diagnosed 46 years ago and so far no kidney pain or stones.

          Sending welcoming hugs,
          Stay safe

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