Raising Interstitial Cystitis awareness

Amanda DeMasters hopes to start an IC support group in Oakhurst

Tiffany TuellSeptember 20, 2012 

In May, 2010, Amanda DeMasters heard two words that would forever change the course of her life -- Interstitial Cystitis. Since then she has had to give up her IT career, change her diet and lifestyle, while suffering daily from excruciating abdominal pain.

Since September is the official Interstitial Cystitis awareness month, DeMasters is hoping to raise awareness for the painful, life-changing disease that has no cure -- a disease that affects about four million Americans, while researchers continue to to find what cause of it is.

For DeMasters, it all started when she began suffering severe abdominal pain about two years ago. Her husband, Justin, was in need of knee surgery at the time so she kept putting off seeing a doctor. She then began to notice she was making frequent trips to the bathroom, and soon her coworkers noticed it also.

A few months later, a urologist finally diagnosed her with IC. She had no idea what it was and had never even heard of the disease.

"At first it was very shocking," Amanda said. "When I was first diagnosed I felt alone. I felt like I had this crazy disease that I'd never heard of ... and I was scared because I didn't know what it was. When you go to the doctors you have your time slot ... and when my 15 minutes was up, I was given a piece of paper and out the door I went and still had no clue what IC was ... I had to figure it out on my own."

So Amanda went online to learn about IC and met another woman that introduced her to a whole new world of fellow IC friends online.

"This whole life opened up to me," Amanda said. "I met thousands of women, and a couple men, and it was wonderful to have that support."

Amanda said support from the IC community has also been very beneficial.

"I can talk to my buddies in the IC community when I'm having a cruddy day and they understand what daily life is like because they're going through the exact same thing," she said. "When I have questions about different treatments or therapies, they can tell me whose been through it and who to talk to. It's really helpful because we all work together to try to help each other out. I wish I could have something like that in the mountains because I know there are people out there who could use support."

Since her diagnosis, Amanda has spent countless hours at the doctor's office. Last year she had 85 doctor visits and two surgeries and this year she's had even more visits and three surgeries. She underwent a trial surgery procedure, which unfortunately didn't work. She takes Elmiron, the only FDA approved drug for IC, but it has bad side affects including hair loss, nausea, upset stomach and migraines. The medications only treat the symptoms, not the disease.

As part of the disease, she also continuously suffers from glomerulations -- pin-point sized areas of bleeding inside the bladder wall. She said the disease feels like a constant urinary tract infection and it keeps her up at nights.

According to the IC website, some patients have to use the bathroom as much as every 10-15 minutes, making it hard to travel or live a normal life. Amanda herself has to go 20-25 times a day, sometimes even more during flare-ups. Her last resort to deal with the disease is to have her bladder removed -- something she is now looking into.

She has also had to give up some of her favorite activities -- 4-wheeling and riding motorcycles -- because of the pain those jarring activities now cause her. The disease has changed everything down to her clothes. Because it causes bloating -- called "swelly belly" -- Amanda fluctuates between a size six and 14.

Because many foods cause the disease to flare up, Amanda is now on a very strict diet. She was forced to cut out all acidic foods, spices, processed foods and can't eat anything with pesticides or preservatives -- even fruit is restricted. Her diet now consists of a lot of organic chicken and brown rice. Even a handful of barbecue potato chips will make Amanda sick for days. To help IC sufferers with their new diet, there's an app now that people can download onto their phones to help them with their diet at home, grocery shopping or when eating out.

When Amanda was first diagnosed, she said she was worried how her husband would take the news. His reaction -- "What's the next step?"

"He's always there for me," Amanda said. "He's amazing and I could not ask for a better husband. He's my rock. He's just an amazing man and I'm blown away by the amount of support he gives me. He's the best husband in the whole wide world. He's amazing and the best father.

Justin said the changes have been hard, but he knows Amanda's done everything she can do.

"Everyday life is a lot rougher with a wife in pain 24/7 and a little one running around," he said. "The way it touches her touches me inside, but you do what you've got to do."

Both Justin and Amanda say the ordeal has brought them closer together.

"We have more conversations now, more communication," she said. "When I was first was diagnosed and read that 75% of marriages (with spouses who have IC) ended up in divorce, I looked at my husband and said, 'We are going to be one of the 25%,' and he said, 'Yes, we are.'"

Justin even goes to Amanda's support group meetings with her. The two work as a team, doing everything together down to making their daughter, Allison's, school lunches.

"The three of us and our bond and love -- that's what's most important in life," Amanda said. "We fight together against this disease. Even though there's a lot of sad things about IC, you have to stay positive because so many things can cause it to flare up. Having faith is really important and strong support from your family and an amazing husband like I have."

A resident of Cascadel Woods, Amanda hopes to start an IC support group in Oakhurst, but needs a good location to do so. Anyone interested in helping Amanda's support group come to fruition can contact her at demasters@netptc.net

For more information about Interstitial Cystitis, visit ichelp.org or www.ic-network.com or Facebook.com/causepage.

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