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  • My Story

    My Story

    When I was fourteen, in the beginning of October I began having symptoms of a urinary tract infection, they came on very suddenly I remember that much. It was the weekend so I went to a acute care center, and they prescribed me an antibiotic, the first time it was liquid because I'm horrible with swallowing pills. They told me the symptoms should disappear within a week but to take it until the medication was gone (about 14 days). The symptoms never went away, so I went back and got a different kind of liquid medication, took it until it was gone and once again it did not work. The third time I went back my doctor forced me to take a pill type medication, and since I couldn't swallow pills we ended up resorting to crushing the pills to take it (turned tongue, fingers and urine blue) that also did not work. The fourth and final type of medication that we tried was an orange type, I remember it turned my tongue, fingers and urine a orangish type color.

    I do not remember the medication names off hand, my doctor has them in my file but as they didn't work I never bothered to remember them.

    After the forth attempt, my primary doctor sent me a urologist - Dr Janet E. Smith (Sioux Falls, SD), by mid December I had an appointment with her and we went over my symptoms. By the very end of December she did the cystoscopy with hydrodistention. By her criteria of Interstitial Cystitis I was between a 3-4 because of the glomerulations on my bladder wall, however I did not have any hunners ulcers. After it was diagnosed I was put on 6 pills of Elmiron a day (3 in the morning, 3 at night) after 17 days on it, I actually felt normal again at school.

    So I stuck with the Elmiron for as long as I could, even though after the first year of it I was having side effects from it, the most obvious one being chronic diarrhea (too much info, i know but important to the reasoning for changing it). I stuck with elmiron until I was 18 and a half, almost everyday going through the chronic diarrhea, which I ended up taking Immodium daily for. I rarely went to the urologist unless it was the required six month check up, as for the most part I felt fine, I didn't want to tell them about the side effects as I was afraid they would take away the only medication that had helped. Finally when I was 18, I had enough and started talking to them about it, as it had been getting so painful and at times I was bleeding. So then they took me off of it, did another cystoscopy with hydrodistion and this time around with there criteria I was a 4, worse then before but showing very few symptoms because of how well the Elmiron had been working to cover up the symptoms.

    Once off the Elmiron they had me switch to Installs, essentially using a catheter to get a elmiron cocktail into my bladder without the side effects. At first I was completely against it, but I grudgingly got used to it. I never did actually do them at home, always went to the urologist to have it done as apparently I need to learn to untense my muscles. (Long story there, dealing with going to a therapy thing to deal with said muscles but for me it didn't work out and I told them I refused to go anymore after about 5 times as it was making my symptoms worse afterwards...)
    Anyway after 1st I did the instills once weekly, then later once every two weeks.

    During this time the diarrhea hadn't gone away, they thought with the Elmiron out of my system that the Diarrhea should have gone away in about a week or two. So they sent me back to the doctor. I was forced to have a colonoscopy to make sure that the chronic diarrhea hadn't messed with my intestines too much, also because before my mom had been found to have non-cancerous polyps. Found out I did not have Crohns disease but then they told me I had IBS. Told me that if I needed help with pain management to contact them... I never contacted them. They essentially just told me live with it. Thankfully probably about two or three months later the symptoms stopped pretty much altogether for the "IBS" - left me feeling like it likely had to do with the Elmiron all along.

    So I kept with instills for the IC. They went good for over a year it seemed. Then I kept getting recurrent bladder infections. I'm assuming because my Uretha was opened up more? I have no idea actually why I was getting so many (this was happening all last year) but I found that other IC patients get them a lot as well. While I had the infections they had me go on antibiotics, and after so many of them they put me on a maintenance (macro-bid small dose daily), mostly helped unless I forgot to take it for a while.

    This past december was the last time I went to my urologist. Since then I have been on no type of drug for the IC or having any UTI's that I'm aware of. For the most part I'm doing fine, we're seeing how far we can stretch these instills out. Personally I'm hoping I'm in remission and that this never comes back.. I'm 21 now and will be 22 in June. I really do not want to deal with IC for the rest of my life. I've been pretty fortunate with how the treatments have been offered for me have been pretty good about treating the symptoms if not the underlying cause. As for pain management with it - well I've figured out that any type of drug and I don't get along very well, asprin included. I usually get side effects that I don't like such as nausea or fatigue with any antibiotics or any other type of drug I'm on.

    For now I'm taking it one day at a time and hoping that the other autoimmune diseases that are supposedly linked to IC don't bother me at some point later in my life.

    I want to raise awareness about Interstitial Cystitis and possibly the other autoimmune diseases as well, right now I'm trying to do this on twitter with trying to reach out to celebrities such as Ellen, Dr.Oz, Dr.Phil, among others. The more people are aware of them, the more people who can be helped. Also the more people who are aware of them who are in positions of power, the more likely they will be researched or have more funding for research. I'm hoping that they find a cure for it entirely. As undiagnosed IC can make quality of life pretty unbearable and even with treatment some people don't respond as well to the medication as I did...

    For the record, I adhered to the IC diet for the first two months of treatment when I was first diagnosed. Since then I've eaten for the most part whatever I want in moderation. I'm happy to say that tomatoes don't bother me much at all, although strangely enough grapes do...

    Obviously this is an indepth overview of what I went through, not a day by day account - I didn't say everything as I don't even remember everything at this point... But I do remember that in the beginning I felt isolated, embarrassed, ashamed to talk about it, and I don't ever want to feel that way again, I also want to encourage other people that it's okay to talk about this to be people they know (as long as it's in the right situation..)

    Diagnosed with IC when I was 14 (in 2003)
    Diagnosed with IBS when I was 19 (in 2008)
    -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
    -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
    -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
    -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
    -Did instills weekly for over a year (after that I got chronic uti's)
    -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
    -Medications that I'm taking right now that help with IC symptoms:
    -hydroxyzine hcl 25mg
    -amitriptyline hcl 35mg
    -Cyclosporine (unmodified) 400mg (dosage subject to change)
    Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.


  • #2
    Thank you for sharing your story. I'm glad you seem to be doing well.

    Warm hugs,
    Stay safe

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    • #3
      Thanks for sharing, I hope you continue on the road of great health.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily