Interstitial Cystitis: One Patient’s Journey (ongoing)

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In June 2012, I had flown to Chicago to meet up with a poetry friend and attend a socialist conference. After having a great time with my poetry friend, I went to the conference, which soon led to an excruciating couple of days in which I spent hours on the toilet with painful and frequent urination. I kept my anguish a secret. When the plane landed in Boston, I already had a doctor’s appointment for the next day. The doctor did a urine test to run a sample by the lab and he figured I had a routine UTI, so he prescribed an antibiotic. The antibiotic, however, didn’t work, so after coming home again, this time from Portland, OR, I again went to the doctor who never got results from the lab but gave me another round of antibiotics anyway. A week and a half later I returned in even more pain radiating throughout my lower pelvic area into my back and chest. This time the doctor said there was no presence of bacteria found in my urine, so I must not have a UTI. He referred me to see a urologist.

This was actually the second time I had seen a urologist. In my early 20s, I went to see a urologist after spending a night in the emergency room over a severe UTI, which doctors called pyelonephritis, a urinary tract infection so serious that it infects the kidneys. I remember the doctors in the emergency room arguing with each other. One said, “The leukocyte count is only plus 2. That isn’t serious enough to indicate an infection like pyelonephritis.” The other doctor said, “It could still be pyelonephritis.”
After that, I went to see a urologist who did a test of my urine, but he said everything looked good. He claimed, “Well, there is nothing wrong with you.”

So, it was my second time seeing a urologist. My girlfriend at the time was with me. During the visit, we regularly exchanged glances because the doctor was so rude and idiotic. He claimed that I must be sipping too much water to cause so much urinary frequency. He said, “Lots of women have bladder problems. Just go home a wait six weeks. You’ll get better.” He also performed a pelvic exam, which was pointless because he did not get any information from it.

After that terrible visit and still in terrible pain, I asked the Doctor Finder phone line operator to please find me a female urologist. After a long wait, the Doctor Finder person admitted that there aren’t many urologists who are female. In fact, there was only one that was coming up in the system. I made an appointment with her. Right away she said I had a condition known as Interstitial Cystitis, a chronic inflammation of the bladder lining. She said the cause is unknown and the condition is incurable, but the problem can be managed with diet and medication. She handed me two slips of paper that detailed what foods to avoid, such as citrus, processed tomato products, citric acid, coffee, caffeine, alcohol, spicy foods, soy, chocolate, vinegar etc… Over the course of many months, I tried taking antispasmodics and an antidepressant, neither of which seemed to help that much long term. I cried in her office many times. She was very cold and detached, ready to dispense medicine, but that was about it.

My primary care doctor noticed my distress and wrote in my medical report, “Patient has anxiety and depression.” He wanted to prescribe me an antidepressant. I refused to take that medication, and I soon got off all medication. I read the Better Bladder book written by a health care professional who has Interstitial Cystitis (IC) and has spent a decade researching the disease. The thesis of her book was that patients with IC should not eat gluten or dairy. In November of 2012, I realized that I really wanted to go gluten and dairy free, but I felt lost. Gluten and dairy are the primary foods in the Standard American Diet (SAD), which I had grown up with. I remember going to Morrison’s, a smorgusboard, where my favorite foods to eat were creamed corn, Mac and Cheese, mashed potatoes with gravy, and chocolate milk. I loved the combination of pizza and ice cream. The temptations seemed overwhelming. How could I give up such food? On the other hand, I worried about becoming disabled. If my health kept spiraling out of control, I would lose everything. I was already becoming isolated from the major relationships in my life. I hated my painful body. The standard for a good day consisted of a day in which I could imagine that one day I would actually be able to touch myself again without wincing from pain. I wanted to heal from IC more than I wanted to eat delicious American foods, so I tried going gluten free first. The reason that people with mysterious, seemingly incurable health problems go gluten-free is because sometimes there is a theory that their condition could be an auto-immune disease. One theory is that the consumption of gluten is difficult for the body to digest, so food particles seep out through the small intestine, get into the blood stream, and cause the body to attack itself. Another theory suggests that consuming gluten-containing foods leads to inflammation in the body. Dairy can have a similar affect when not properly digested and can also cause inflammation. (Think of how a bowl of ice cream makes you have more mucus when you have a cold.)

It was a terrible month-November 2012. I didn’t know much about going gluten-free. I ate a lot of broccoli with rice pasta, day after day. Even now, certain kinds of rice pasta make me feel sick because I ate so much of it. I also forced myself to eat salad even though I’ve always hated salad. Because I couldn’t have vinegar, the only dressing that I knew of was olive oil. At this point, I was still trying to be vegetarian. I had been vegetarian for five plus years and didn’t want to go back on that commitment.

At first, I gave up on gluten-free because I was still in so much pain. It didn’t seem to help. But taking the medicines didn’t help me either. I was lost. I made a YouTube video about the failure of Western AND Alternative Medicine in the treatment of IC. I was so angry and hopeless and worried that I would have these razor blades in my private interiors forever. I considered whether or not life was worth living with such a broken body. Then the idea of being gluten free came back to me. I decided I would make one meal a day gluten free until that felt comfortable, then I would make two meals a day, then three… I needed to try again because I wasn’t sure if I had given the diet a fair shot. By March 2013, I had finally worked up to having all three meals be gluten free, and I had learned things along the way, how to make gluten free bread in a pan, how to saute vegetables, how to eat a lot of asparagus and sweet potatoes, how to make green smoothies. I realized the error of my ways. I had been gluten free in November but I had not considered eating anti-inflammatory foods, like greens in green smoothies. I also had relied heavily on grains for my calories even though grains are inflammatory (some more than others). And I had been using canola oil rather than something less genetically modified and less inflammatory like coconut oil.

Since March 2013, I have been completely gluten free, though I may have experienced some accidental exposures. I also added in being dairy free a few months later. I wish I could say that I am completely better, but I’m not. I’m a little better. I’ve also struggled with yeast infections since May 2013. The $60 probiotics that I bought at whole foods didn’t seem to help at all. I’m now trying a new probiotic called Restora and am feeling a little bit better, but I have my ups and downs. It’s too early to tell if it is working.

I’ve also been experiencing chronic dental problems, which is a whole other can of worms, but might be related. My dentist cannot find anything wrong with my front two teeth despite the chronic pain that I have in these two teeth following an infection in one of my front teeth that resulted in a root canal and an additional surgical procedure to remove the tip of the root.

I’m thankful that I moved into a gluten-free dairy-free home at the end of August. One of my roommates has Celiac’s, one has a kidney condition, and another is healthy but health conscious. Having the support at home is so important, but it’s still challenging when I work two jobs and attend a weekend school. I don’t have time to prepare enough food. I’m almost always hungry. This whole experience has resulted in me dropping 30 pounds. No one said anything or noticed that this happened, however. I tend to keep it a secret, my private turmoil.

To make matters worse, people often think of being gluten free as “elitist,” because gluten free foods are more expensive and buying organic is also more expensive. I feel like I don’t belong in public spaces when I go out unless I take a risk. I hate this American mentality that in order to belong somewhere out in public you must buy something. In order to use the restroom, you must buy a croissant. Toilets should be available to everyone who needs them whenever they go out. Instead, I have peed on trees in the Arboretum and in places behind bus stops. I have taken shits behind gas stations. 

Obviously, I have a lot of anger. The food system created my illness by getting me hooked on gluten, dairy, processed foods and sugar. Without these foods, I probably wouldn’t have gotten sick. But once you damage your body, it’s hard to undo the damage. I believe that we’re all addicted to the foods we eat. At least, I was. I would eat candy instead of a meal sometimes. I would really have to think about the last time I ate a vegetable. It’s easy to not eat vegetables in America.

I have so many questions: Am I allergic to gluten or does going gluten free simply decrease the amount of inflammation that I have? Is IC an autoimmune disease or an un-treatable infection without a trace? Should I consider going on the GAPS diet ( a very strict diet of no carbs and a lot of broth? Or should I stop torturing myself with diets due to the stress that they cause? 

Unfortunately, I think the GAPS diet is my next journey. I’m reading the book right now. It involves following a very strict diet of broth and low-carb. My IC symptoms are less severe, and I don’t have urgency or frequency as often now, but I still have severe yeast symptoms, which I’ve had since May 2013, and the current month is January 2014. That’s more than 8 months! Can you imagine how horrible that is? Have you ever had a yeast infection? How long did it go on before you felt insane? Doctors simply cannot help me. All they want to do is give me antidepressants or antibiotics, two medicines that are partially responsible for the decline of my health. I’ve used various alternative treatments for yeast, such as Grape Seed Extract in pill and tincture form, Baking Soda with water, garlic, Oregano Oil, Probiotics, Herbal Detox for Candida, Green Smoothies (raw foods) etc…  So far, no consistent luck. That’s why the GAPS diet appeals to me because it is the one thing I haven’t tried, but I do worry that I’m making a mistake. What else can I do? 

I’m tired of people thinking that I’m “crazy.” Recently, I had a doctor’s appointment in which the doctor’s aid responded to my dietary restrictions by saying: “Really, what do you eat? How do you go out with friends?” He didn’t understand why I would be on a strict diet when I don’t have Celiac. I’m frustrated with the lack of understanding that people have toward those who are on medically necessary diets, particularly if the medical necessity is determined by the individual patient rather than a doctor. Doctors do not know what causes IC or how to effectively treat it. Alternative medicine doesn’t have all the answers either. Overall, both kinds of medical communities are failing IC patients. Therefore, IC patients are the experts on the disease. We should be taken seriously, even our questions and confusions are an important part of the puzzle. 

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About pennapril

feminist, activist, poet
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4 Responses to Interstitial Cystitis: One Patient’s Journey (ongoing)

  1. Brittany Marie says:

    I dropped about 30 pounds as well!! Keep strong 🙂 🙂 🙂

  2. Brittany Marie says:

    I also believe that my binge eating problem and being addicted to dairy, gluten, sugar and processed foods is what helped contribute to my IC!

  3. amfw37 says:

    Thanks for sharing all of this information about your experience. I realize that this post is now a year old but it resonated with me insofar as it recalled my own encounters with IC. I started having IC symptoms several years ago but fortunately was already avoiding dairy and gluten. I would later–after numerous obnoxious conversations with naysayers–get tested and find that I do, in fact, have a serious gluten allergy. In any event, I write this little missive in a show of support and solidarity.

    I also have a secondary motive. It seems that IC and Celiac are inflammatory responses. I’ve recently added another health challenge to my list of probable inflammatory responses–another IC–specifically, a threat of an incompetent cervix. Of course, current medical research is uncertain about the potential causes of this condition. This uncertainty leaves those of us dealing with roving inflammation and/or persistent discomfort and/or obnoxious health challenges to speculate wildly (and often also intuitively and correctly) about the causes and potential resolutions to our conditions.

    Perhaps you have zero intention of carrying children. Or perhaps you’ve already done so without incident. As a self-identified QPOC with a laundry list of health issues and discomforts over the years (most of which I have fortunately mediated with altered patterns of nutrition), I definitely wouldn’t have thought pregnancy was in the cards for me but here I am, totes preggers. I find myself contending with a slightly terrifying situation. My bladder, the one that I thought I “fixed” by drinking tons of green juice, eating tons of vegetables, and forgoing caffeine/wheat/dairy/fried food/packaged food/etc, seems, in pregnancy, to be suffering. Moreover, it seems that there is a correlation between my bladder and my uterus. Eg, when I’ve eaten even the tiniest amounts of bladder-triggering foods, I also experience contractions.

    In short, it may be possible that there is a relationship between IC and IC (which in my case is technically not an “incompetent” but rather a “dynamic” cervix that will, with medical and dietary intervention, hopefully stay closed until I reach full term). I wanted to mention this to you not in the interest of fear-mongering or misinformation-spreading, but simply as a word of caution. Should you, or anyone in your community of folks with IC plan to become pregnant, perhaps it would be a good idea to do a couple of things: 1) get the IC under control if possible, for as long as possible, and 2) make sure to have your midwife or doctor check the length of your cervix with some manner of vigilance throughout your early-mid pregnancy. Honestly, the two things may have absolutely nothing to do with one another… but in my case, they seem to be interrelated.

    Thanks again for sharing your story.

    -aw

    • pennapril says:

      I think you’re right to link the bladder to overall pelvic and cervical health. I hope you’re able to find balance again after the birth of your child. One of the women who inspired me on the ICN thread was a woman who had several children and actually became pregnant again. She ended up doing a Paleo kind of diet and says she is mostly healed. I personally never want to have kids, especially because of all my health problems, but I understand that sometimes one takes risks with their body for a larger goal of having a child. Good luck to you.

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