Glendale College's Student Magazine
Monday July 16th 2018

Interstitial Cystitis: a personal quest for a cure

Intersitial Cystitis

9:30 p.m.: go to bed. 9:50p.m.: get up and go to the bathroom. 10:22p.m.: get up and go to the bathroom again… 11:00p.m.: get up and go to the bathroom yet again. Get up and go only to find that I don’t really have to go. So why does my bladder think I do? A day in the life of person with interstitial cystitis is unbearable. It is a rare disease that “has no cure” — or so I’m told. Some doctors believe it is an autoimmune disorder, while others say that there is not sufficient evidence to prove that it actually is. It feels like something is poking me from the inside of my abdomen, more specifically, the lower left side of my abdomen. I go through my day constantly feeling like I have to urinate. I have been living with interstitial cystitis, also known as IC, since early

Interstitial Cystitis can be painful and debilitating, but there is hope.

2009. As I go from doctor to doctor, I find myself growing more and more miserable. I think to myself, “How did this happen to me?”

As the nights grow longer and the pain intensifies, I finally schedule an appointment with my general practitioner, Dr. Mihaela Beloiu. I’m sure it’s just a bladder infection. Strangely, the lab results show not even the slightest indication of a bladder infection. So what is it? That’s just what Dr. Beloiu wants to find out. “I’m going to order more lab work on you,” she says with a curious and concerned tone. She orders more lab work, and still nothing. She now orders an ultrasound only to find… nothing. The process of elimination leads Dr. Beloiu to conclude that I have interstitial cystitis. I look puzzled while she explains the rareness of this disease. She says that there is no cure due to lack of research. She says that the cause is unknown… I could not believe my ears.

Dr. Beloiu refers me to an urologist. I keep saying, “Please give me something for the pain.” I am in total agony at this point. The urologist refuses to give me anything for the pain. He says he will not give me anything until he diagnoses me and only suggests a procedure called a cystoscopy that requires anesthesia. I had already been put under earlier in the year for removing my wisdom teeth and for removing my tonsils, and knowing all the risks of anesthesia I do not want to do that again. This specialist doesn’t want to help me. I am alone with this aching nightmare. I quickly begin my search for another urologist. Months go by and I have seen almost a half-a-dozen specialists.

It is sad to think that this disorder does not have the attention it deserves. I begin to believe that doctors and researchers have taken an out of sight, out of mind approach to IC.

But I finally end up at Dr. John J Martin’s office. Something feels different here. Dr. Martin and his nurse seem to really care about my pain. Their small office looks like it is stuck in the ‘90s and it somehow comforts me. They tell me that my severe pain is probably an ongoing flare-up. The nurse gives me a list of what not to eat or drink and tells me that this has to be a way of life now. The list has everything on it. With a panic, I think “I’m going to starve!” She tells me about an over-the-counter antacid called Prelief that can be taken before a meal to eliminate acid. It is only sold at Costco and on the internet. However, she cautions me about my symptoms. They are severe and I cannot eat anything acidic or anything containing potassium, even with Prelief, until the symptoms are manageable. Until then, I am to keep a food journal in an attempt to pin-point which foods I am most sensitive to.

Dr. Martin immediately starts me on a DMSO (dimethyl sulfoxide) treatment. I must endure this treatment weekly until my IC is under control. I wouldn’t wish this treatment on my worst enemy. It consists of the medicine, DMSO, being injected into the bladder through a catheter. Dr. Martin also suggests the cystoscopy. He tells me that it must be done in order to see my bladder and give a definitive diagnosis, but that I can be awake during the procedure. Not knowing what I was in for, I finally agree. This is worse than the DMSO treatment! First, they fill the bladder with a liquid, through a catheter; in order to stretch the bladder walls. In some cases, stretching the bladder gives the IC sufferer some relief after healing from the procedure. This relief may be for a few weeks or it may last for several months. Though there is a possibility of temporary relief in the future, presently, stretching the bladder creates a multiplied urgency to urinate. I am full of anxiety just from the pressure. Once the bladder is stretched and full of liquid the doctor begins the procedure. He inserts a long tube with a light and camera through the urethra into the bladder. As I lay there all I can think is “are they done yet?” it is complete discomfort. Maybe the anesthesia wasn’t such a bad idea after all. Dr. Martin tells me that he can see many blood vessels in the wall of my bladder. This is not typical of a healthy bladder. It is confirmed – I have IC. All hope has gone out the window. I rush to the restroom to finally get all the liquid out. My temporary relief from having my bladder painfully stretched never comes.

After months of painful DMSO treatments, taking medication that made me almost pass out, more often than not, and eating very basic meals like boiled vegetables and boiled bland chicken and water, I cannot bear it any longer. I find myself depressed and crying at the dinner table as I watch my family indulge in their delicious, flavorful meals. I look down at my plate to see a bunch of boiled mush — cruelly unfair. My dad says the doctors don’t know what they are talking about, but still he and my mother prepare separate meals for me every day. The worst part about it is that the pain has only slightly subsided. My food journal is nonexistent and I have been taking Prelief more often than my nurse knows about just so I can eat regular food again.

I cannot live with this agony any longer. I decide to do my own research. I search websites and articles and compare what all these urologists have told me about this rare and covert disorder. I now know that interstitial cystitis means inflammation of the bladder. Interstitial cystitis also means that there is a breakdown in the mucus lining of the bladder. I find that people with interstitial cystitis tend to also have low vitamin D and calcium levels. I have always had a problem with unexplainable inflammation throughout my body and I have never been a milk enthusiast. I am determined to eliminate all these contributing factors in hopes of feeling normal once again.

I head to the local farmers’ market to find natural remedies. I leave the farmers’ market with a dry vitamin D supplement as well as turmeric capsules (roughly $40 altogether). Turmeric is a natural anti-inflammatory agent, but it is risky because it is in the mustard seed family and mustard is on the do-not-eat list. Something is missing; I still need to try to rebuild the mucus lining in my bladder. Desperately searching the Internet, I come across a website that specializes in IC. As I stare at the screen with a humbled joy, I find a pure aloe vera supplement. This is the answer to my prayers. This will coat my bladder; it has to. The customer reviews give me hope. Eagerly, I place an order for one bottle of pure aloe vera. This alone is about $20 with shipping for only 30 pills.

I begin taking the dry vitamin D, the turmeric and the aloe vera supplement while I continue to take Prelief before each meal. Within the first month I notice something miraculous: I have no pain. I am so excited I call my boyfriend to share the news. I tell my family; I tell my friends. I had forgotten what it felt like to live without pain. The constant pressure is gone. Now I can cry because I’m happy, not because I’m in pain or because my pants are too tight around my waist, not because I like to lie on my left side when I sleep. Maybe now I can eat and drink without fear. This is truly a miracle.

Now, in 2012, I am eating and drinking whatever I want. I only take my self-discovered herbal remedy when I feel pain, which is less frequent than ever. It is not a permanent solution and Western physicians may argue that this is not a cure, but the pain is not running my life anymore. I could go weeks and even months living pain-free! My flare-ups are infrequent and usually related to stress.

I had a will and I found my way to live my normal life.

 

(Updated by author January 30th, 2015)

Interstitial Cystitis:

• Interstitial cystitis, or bladder pain syndrome (commonly abbreviated to “IC/BPS”), is a chronic, oftentimes severely debilitating disease of the urinary bladder.

• Both men and women suffer from this condition, however, it is more common in women than in men.

 • Women of menopausal age are the most susceptible but anyone, even children, may develop IC.

• Many researchers believe a trigger (caused by one or more events, such as a bacterial bladder infection) may initially damage the bladder or bladder lining, and ultimately lead to the development of IC.

• In 2009, the RAND IC Epidemiology (RICE) Study surveyed more than 100,000 US households and determined that from 2.7 to 6.5 percent of US women may have IC, which translates to about 3 to 8 million women. The same study suggested that 1 to 4 million men have IC as well.

• There is currently no cure for IC, but it is considered to be a treatable condition.

Information courtesy of The Interstitial Cystitis Association (ICA) http://www.ichelp.org

Marelle Reid’s blog on her IC journey  https://thehappybladder.wordpress.com/2015/01/19/stories-of-hope-my-body-was-telling-me-what-i-needed/

About Arlette Yousif
Arlette Yousif is an actress and a writer who is involved in all aspects of the entertainment industry. She is an assistant to Grammy Award winner Neal Pogue as well as a Production Coordinator and Assistant for Fulton Yard Unlimited. Join her on Facebook at: www.facebook.com/ArletteYousif Or email her at: arletteyousif@gmail.com

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