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IC, is it just a manifestation of a larger problem?

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  • IC, is it just a manifestation of a larger problem?

    I am a 42 year old male with IC. I am of the belief that many more men have this disease than is generally recognized. I was diagnosed about four years ago. I have periodic bouts with severe bladder pain and painful urinating. Elmiron has really been a godsend for me. I went a few months without it a couple of years ago, and had a major relapse. I take it every day, and it has really helped me more than anything else.
    However, I wanted to share some things with this group and see if anyone has any thoughts or has had similar experiences.

    I read Lindsey's post about the yellow bile movements, and her concerns about the medication affecting her liver. I don't recall having this experience, and I've been on the drug for four years. However, I really wasn't looking for it, so I may now do so. I have experience some mild abdominal discomfort, and occasional constipation.

    What I really wanted to discuss here is what are the effects on the liver. All the literature I've read merely state that it affects liver function, but not in what way. Also, what, if any, connection IC may have with other diseases.

    My interest in this is that in the last week I have developed acute gouty arthritis in my left elbow. The pain and swelling is severe.

    I have been reading a lot about gout in the last week, and what I've read causes me some concern. Gout affects mostly men between the ages of 40 and 60 and post-menopausal women. It is caused by a build up of uric acid in the blood. When the level of uric acid goes above about 7 mg/dl and stays there for some undetermined time, crystals of monosodium urate will form in the joints. In response, the white blood cell count elevates as the body trys to fight of the mineral invader. Hence, the pain and joint swelling. Eventually, if not treated, the joint can be destroyed. Although there is a genetic component in some patients, I've yet to find anyone in my family that has ever had it.

    Anyway, the interesting thing about this disease is that uric acid is eliminated from the blood via the liver, and expelled from the body via the kidneys.

    My question is this: Could the four years I have on elmiron have impaired my liver's ability to eliminate uric acid, and so have caused the gout? Has anyone else had these problems/questions?

    Also, I have read some recent literature which suggests that IC may be a manifestation of an underlying systemic disease. This is an interesting question, because I have had severe allergies most of my life, and have taken anti-histamines (actifed) for many years. Since recent research has implicated histamine production from mast cells as one possible complication in IC, and that there may, in fact be an as yet unknown bacterial causitive agent, could the IC I have developed be symptomatic of my severe allergies? If a baterial agent is eventually implicated in IC, could this bacterial agent also be a causitive agent in some severe allergies, especially since histamine is implicated in both?

    I have thought (contrary to popular and medical opinion) for many years that some allegies could be caused by infectious agents. My wife never ever had allegies until we began having unprotected sex. Now she has allergic symptoms similar to mine, though not as severe. Coincidence? I wonder.

    Think about it. Things to ponder late at night, when both elbow and bladder ache.

  • #2
    To both of you, I have been researching and speaking to many ICers and a friend who has written a book on IC. My opinion along with my doc and many of my IC friends is that first and fourmost we believe there is an autoimmune componant here. I think it leaves us open to systemic diseases and allergies to many things because we are predisposed. Besides inherent factors, a shock to the system such as a loved one dying, a severly stressful situation (such as what happened to my body, although I feel I was predisposed). Also menopause, or for men the drop in testosterone as one ages (hormone related.) These can trigger chemical sensitivities and other autoimmune diseases. I remember in my 30's developing what I look back on now, as an allergy to my husbands seman.It just always felt like I was getting inflammed and so we used a condom. Then a bladder infection at 42 and on to the diagnoses of IC. Now of course due to the IC pain, sex as I once knew it no longer exists. Also since then, I have developed other autoimmune problems such as Hashimoto's Thyroiditis and Arthritis, all autoimmune. Of course Gout is a form of Arthritis. I think many of us are different in the sense that IC manifests itself in different ways. Some do escape the misery of other diseases such as Fibro etc. and I think their pain is really more connected to the bladder along with much frequency. I have much more pain than frequency but that is because I have much more pain in my entire body The bladder is the worst kind of pain because of the fact it is an organ and that creates a different pain that is hard to tolerate for a length of time. Bladder pain affects the nervous system and the left side of the brain where are emotions are. Maybe that is why when my bladder pain is at it's worst my body shakes as if I am cold.
    Anyway, I just wanted to share with you both because it is nice not to feel so alone. I am sure you are wishing their could be more research going on as I. I would like some answers in my life time and a cure would even be better!
    Hope this helps,
    Cora(:

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    • #3
      I'm in agreeance here. I think IC is an autoimmune disease. Someone somewhere just hasnt figured it out yet and I think they need to look at it from the autoimmunity perspective.

      i was fine until 1996. I developed Graves Disease, which is autoimmune. Not one year later to the day...I came down with IC. Since July 1997 when I was diagnosed with IC..I now have severe IBS, spastic colon, Pelvic Floor Disfunction, allergic reactions to meds I've been able to take previously and cant take now, worse Migraine headaches, and fibromyalgia. Somewhere..something in my body triggered all of this. I dont know how..I dont know why. I know stress aggrevates everything. But...almost EVERY ICer has one or more of the symptoms I've described...there HAS to be a connection somwhere. So far, I have yet to find someone on here with Graves Disease, however, I have found many of you with Hashimotos Disease, which is the opposite of Graves, but both thyroid related and both are autoimmune diseases.

      Wonder who we can write to to see if they are researching a "trigger" in the immune system??

      hugs
      deb

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      • #4
        My vote go to autoimmune disease. I have IC and another autoimmune disease(crohn's disease).

        Comment


        • #5
          I too vote for the autoimmune connection (I know this isn't answering your question about gout, sorry).

          I have Hashimoto's thyroiditis (autoimmune), migraines, severe allergies, not bacterial stomach ulcers... more but I can't think of them (tells you that I must be feeling good ). For myself, it only makes sense that it's autoimmune related. I read somewhere that (don't remember the percentages) that people with one autoimmune disease quite often have more than one (hey, it's logical).

          As for the gout... I have kidney problems (not function, just hydronephrosis) on and off it seems, and I'm beginning to think that there is a connection with my IC... perhaps it's that my bladder is so small that if I don't void it backs up? who's to say. Sometimes I think when it comes to things like your issue with gout, we have to listen to the doctors and still in the back of our minds come to our own conclusions...

          I wish you all the best with the gout issue. My grandfather and uncle both had gout (in their feet) and it wasn't pleasant.

          Liisa
          All obstacles in life are mere opportunities.

          - Jesper Larson, Danish Mathematician

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          • #6
            One more for the immune connection.
            My problems started when I moved into an apartment that had been newly renovated. The carpet still smelled. I developed what I thought was pink eye after eing there for a day, but actually turned out to be an allergic reaction to the apartment(never had allergies to ANYTHING before)Then, I stated having allergic reactions to just about anything. Interestingly enough, my roomate developed this HUGE growth on her foot, the doctors never found out what it was. She always walked around barefoot on the carpet. Anyways, my bladder problems developed about 2 months after moving out of this apartment, I started getting bladdder infections with a new partner, then I had about 10 of them, and they developed into IC(Never had bladder infections before this either). My roomates foot got better when we moved out, but it still has not gone away completely. I think the chemicals in the apartment turned on an immune response that can't be turned off now. Sucks to be us, don't you think???

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            • #7
              I think it is an autoimmune disorder too.

              Mine started 20 years ago, after having about 4 bladder infections over a years time, and then a major bladder infection, that went away, but the frequency, urgency, etc. never did. Also, was diagnosed after a week of being hospitalized with some wierd liver thing,... Anyway, I suffered with IC for 10 years longer, had to have my gall bladder out, that was a weird one too, as I didn't have stones it took forever for them to figure it out, but I had cholesterol crystals, and I believe an enlarged lymph node in the area, have also had endometriosis, (doctor's don't know what causes this one) And finally diagnosed with IC in 1991, biopsied and hydrodistention.
              They found hunners, and mast cells.

              I cannot tolorate artifical sweeteners, and cleaning agents such as bleach set it off too.. Plus I have one lymph gland that always seems to enlarge with IC in my neck.
              Not sure about the gout question, sorry.
              Wierd disease!!! Dmso seems to always work, except this flare is not responding as well.

              hope this helps,
              Ruthie

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              • #8
                I have to agree with you all about the
                connection to autoimmune disease. In my
                family My oldest son has Rheumathoid Arthritis, my oldest daughter has Fibermralgia, my youngest daughter has Chrones and I Have IBS and IC.
                Lovely family history. I sure do wish
                I had better genes to pass on to my kids.
                Hope you all are having a good day.
                (((HUGS))) Rita

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                • #9
                  Auto-immune or allergic yes! Fibromyalgia, rheumatoid arthritis, IBS, GERD, migraines, hormonal problems, skin problems, and the mother of them all-TA-DAH---IC !!! (I need more initials for the others-the older I get,the longer the list!) Every time I get depressed, I just thank God that these haven't been fatal!
                  We can help one another here. Sue

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                  • #10
                    My ic was/is caused by mastocytosis. That determination has been made after the realization that i have severe systemic mastocytosis. (over 40 times the number of mast cells are present than should be there--even higher concentration in my gi tract

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                    • #11
                      Meghan, how are they treating your mastocytosis?
                      We can help one another here. Sue

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                      • #12
                        Mastocytosis treatments:
                        I take tons of medication, here is my list:
                        benedryl 100mg four times a day
                        atarax 50mg three times a day
                        claritin 20mg twice a day
                        celexa 30mg
                        prazosin
                        estrostep
                        advair 500/50 inhaler
                        singulair 10mg
                        phenergan 25mg three times a day
                        zofran 4mg four times a day
                        xopenex nebs
                        protonix 40mg
                        pepcid 40mg twice a day
                        gastrocrom 1200mg
                        vioxx 12.5 mg twice a day
                        i'm sure i am missing some
                        unfortunally, the doctors have not managed to get my symptoms under control, so i still feel horrible on all of this medication
                        thank goodness for prescription insurance, this is about $5,000 of meds a month
                        if anyone has questions my email is [email protected]

                        Comment


                        • #13
                          BLESS YOU, ACTUALLY BLESS THE DOCTOR THAT DIAGNOSED YOU, SO RARE FOR ANYONE TO BE DIAGNOSED PROPERLY, AND EVEN STRANGER FOR A MALE TO BE PROPERLY DIAGNOSED. IT TOOK ME OVER 6 YEARS TO BE DIAGNOSED CORRECTLY, AND THIS WAS AFTER I HAD BEEN TOLD TOO MANY THINGS TO MENTION...BUT I HAVE ALWAYS FELT THAT IT IS JUST PART OF A BIGGER PICTURE.
                          O HAVE HAD KIDNEY STONES(2x),BLOCKED RIGHT KIDNEY(3 SURGERIES)(THIS ALSO WENT UNDAIGNOSED FOR 4-5 YEARS WITH SEVERE PAIN IN THE RIGHT LOWER PART OF MY PELVIC AND ABDOMEN IT WAS ASSUMED IT HAD TO BE FEMALE RELATED BECAUSE ANY FEMALE OVER 13 THAT HAS PAIN BELOW THE NECK IS EITHER PREGNANT OR SOMETHING ALONG THAT CATAGORY..IT WAS ONLY DIAGNOSED WHEN MY URO, REVIEWED X-RAYS FROM ER VISIT, WHICH I WAS TOLD I HAD KIDNEY STONES FOR THE 3RD TIME, AND THOUGHT IT TO BE ODD THAT SOMEONE COULD HAVE A STONE LODGED IN THE EXACT SAME SPOT AS A STONE TWO YEARS EARLIER. I WAS TAKING MEDS AND DRINKING TONS OF WATER TO PASS THE STONE, THAT WAS NOT THERE...AND I WAS MAKING MY CONDITION WORSE BECAUSE THAT KIDNEY ONLY WORKED AT A 30% RATIO COMPARED TO MY OTHER ONE). I HAVE ALWAYS HAD A HISTORY OF ASTHMA AND SEVERE ALLERGIES(EXTREME WITH SOME THINGS
                          THE DYE IN IVP TESTS TO BE SECOND ONLY TO CATS)THE MEDS FOR IC, LEAVE ME CONSTIPATED A GREAT DEAL OF THE TIME, AND BELIEVE IT OR NOT I WAS A MODEL CHILD IN THE HEALTH CATAGORY...OTHER THAN THE ASTHMA, I WAS NOT SICK VERY OFTEN, BUT AFTER A SURGERY FOR MY ANKLE AND HAVING TO BE CATH. TO URINATE I HAVE HAD SEVERE PROBLEMS EVER SINCE THAT DAY. I HAVE LOOKED FOR FAMILY SIMILARITIES AND THE ONLY ONE IS MY MOTHER WAS ASTHMATIC AND HAD TWO ILLNESSES AS A CHILD, POLIO WHICH EVERYONE THOUGHT SHE HAD NO PERMANENT DAMAGE FROM AND HAD AN ABSESSED LIVER(RARE ILLNESS), SHE SPENT ALMOST TWO YEARS IN THE HOSPITAL WITH THAT ONE AND SHE WAS TOLD MANY TIMES IN HER LIFE SHE HAD A WEAK IMMUNE SYSTEM BECAUSE OF THE LIVER PROBLEMS. I WISH YU ALL THE LUCK IN THE WORLD...AND KEEP IN TOUCH...

                          Comment


                          • #14
                            Meghan,

                            just curious....how does your uro know for sure thats what caused your IC? I'm not being facetious or anything, I'm just wondering how he came to that conclusion as the IC community still doesnt know what causes IC? I know there are mast cells present, I have them as well, and most IC patients have allergic reactions to odd things or things they've eaten/drank/taken orally tons of times..suddenly a reaction. Sounds like you're on a ton of meds, and most sound like antihistimines *I could be wrong though*...but is that treating the problem or making it worse? As I said, please dont take this the wrong way, but if your uro is saying thats whats caused your IC...what study does he have that concludes his descion? I'd be interested in knowing..maybe he knows something my uro doesnt??

                            hugs to you
                            deb

                            Comment


                            • #15
                              i will explain the reasoning sometime tomorrow when i have time to write a long message

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