Coping With A Serious and Potentially Life-Threatening Condition When You Have IC
Although having IC does not mean that one will become ill with another condition, the IC patient is as vulnerable as the rest of the population to serious and sometimes life-threatening illnesses, such as diabetes or cancer. Of course, no one is prepared for the abrupt interruption of a severe illness in her or his life. There are tests, specialists, treatments, medications, and sometimes hospital stays and surgeries. The good news is that modern medicine has improved and minimized radical treatments. However, the patient with IC must consider her or his special needs, and work closely with an urologist.
Six months after Flo was diagnosed with IC she was told she had diabetes. Having already modified her lifestyle to suit her IC needs, she now had to make more modifications. Before leaving the house she had to pack snacks to take with her. She had to give herself injections before meals. She experienced tremendous thirst, but drinking too much water brought on bladder pain. She also experienced a lot of yeast infections with the diabetes, but she could not tolerate the yeast medications (she found she could use powdered acidophilus). The good thing, though, was that the medications for her diabetes did not bother her bladder.
When newer drugs for diabetes became available Flo's doctor wanted her to try them. Flo refused to take the chance. However, just recently, Flo's blood sugar levels elevated and her doctor put her on a new medication. After a couple of food-associated flare-ups, Flo is wondering if the cause is actually her new medication. She's giving it a week, unless her symptoms get out-of-control. Fortunately, she likes and respects her doctor, and thinks he will work with her. She knows her urologist will be there for her, too.
I know how unfair it is to cope with an acute illness. When I was faced with a life-threatening illness, after we moved back to New Orleans six years ago, I was shocked. During my first visit to a new primary care doctor, I was told that I had a large lump on my thyroid (in my neck). The doctor moved fast, which I was not accustomed to. Three tumors showed up on my scan. When I saw the referred surgeon, he told me that I needed surgery. My husband Andy was terribly upset and did not think that I could go through surgery, because of my IC. I, on the other hand, agreed to the surgery because I had lost both my father and grandfather to cancer. Actually, something amazing took over inside of me, something I had not experienced with IC. It was this overwhelming desire to survive and I would do all that I could to live.
I had two surgeries in three days. My biopsies showed both follicular and papillary thyroid cancer, which luckily had not spread to my lymph nodes. My surgeon and his sister, my urologist, were wonderful, as was my previous gynecologist. My IC friends were also great. By my second surgery I knew the ropes, thanks my dear IC friend Sally, who had also experienced two surgeries. However, when it was time for treatment the oncologist I saw would not take my IC needs seriously. He had patients to attend to that were dying, and my thyroid cancer and my IC needs were insignificant in comparison (thyroid cancer is not life-threatening if it does not spread).
Naturally, I was very nervous about my radiation treatment, which consisted of a so-called oral cocktail that contained iodine. The doctors told me that the iodine would go to my thyroid (a tiny nerve bundle was left in my neck), but I couldn't believe that it wouldn't hurt my bladder. Fortunately, they were right, but I surely didn't feel well and I had to stay in isolation for four days. When I told my oncologist that I felt very ill, he actually told me to "suck it up!"
After being released from the hospital I began taking thyroid replacement, which hurt my bladder. I went to see a new oncologist to find an alternative replacement. This doctor too, was angry with me and unsympathetic. She asked why I hadn't consulted an endocrinologist. Gosh, I thought, how am I supposed to know all of this? So I found a nice endocrinologist and bladder-safe thyroid replacement.
I realize that my experience could have been much worse, but the surgeries, treatments and disagreeable doctors were extremely wearing and humiliating. And, although I now know what I needed to do then and I would approach it all differently, every experience is unique.
Not long after my ordeal with cancer I was treated for a bad skin rash (the rash was there before my surgeries and radiation treatment). The doctor I consulted thought that my problem was psoriatic arthritis, and he had me try the cancer-fighting drug methotrexate. I first asked if it would affect my bladder. Two doctors actually said that it would not, but it surely did. Had I looked up the drug, I would have known what the doctors obviously did not know, or did not want to tell me: methotrexate affects the cells of the intestine and bladder, and can cause stomach pain, as well as difficult and painful urination.
Like so many others with IC, I am suspicious of medications and treatments for new conditions, because they may affect my bladder. I also get very tired of dealing with new doctors. It is emotionally draining (even when a doctor is very supportive), and I often feel that I'm in a big tin can when I'm in a new doctor's office; I can hear my own voice as I echo my complaints and concerns. I know this stress comes from too many bad experiences that have left me hesitant to try a new drug, go to a new doctor, and/or get a second opinion. However, when I received a serious diagnosis I had an urge to move quickly. I know that this urge is very normal and healthy. It is the will to survive. Luckily, I was correct to trust my surgeon, and although my treatment has so far served me well, I should have seen more than one oncologist.
This year I am
scheduled for a scan to make sure that everything is okay. I feel
that I'm fine, but I do wonder what I would do for pain management
if I ever had to have chemotherapy. I imagine that I would learn to
self-catheterize liquid Elmiron bladder installations to protect my
bladder (bladder instillations are the most direct method of treatment
and they don't have to go through the stomach). And, I absolutely
know that I'd get a second opinion.
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