Turning Disability Into a Business to Help Others…

 

By Sue-Ann Wayow

A MEDICAL condition more than three decades ago has changed the life of Charmaine Maraj-Edwards, 56, and solidified her career.

At age 21, Maraj-Edwards was diagnosed with ulcerative colitis – a long-term condition in which the colon, the body’s longest intestine, becomes inflamed.

She was hospitalised after suffering symptoms of heavy, bloody diarrhoea, drastic weight loss and weakness. An ostomy surgery was required.

At the time, she was the second person in Trinidad to do such a surgery on May 28, 1986. It was performed in Canada.

At that point, she felt as if life was falling apart and isolated herself for a year.

Since her ostomy surgery, Maraj-Edwards has had to use a pouch to relieve herself.

An ostomy is a surgically created opening through which a small portion of the colon is brought up to the surface of the skin. This can be a temporary or permanent procedure.

The opening is called a stoma and allows stool to pass directly out of the body.

After surgery, the patient has no control over their bowel movements and as a result an appliance (the pouch) that collects the body waste must be worn over the stoma at all times.

This pouch which Maraj-Edwards also refers to as stoma bag is worn outside of the body and comes in different sizes and shapes and can even be used for intimate moments.

Depending on a patient’s medical condition, some may only use the pouch during their healing period. However, others like Maraj-Edwards have to use one for the rest of their lives.

 

Out of her medical condition, she has founded Better Life Ostomy Care, a business with a focus on providing care, consultation and supplies to patients. It is the first ostomy store and clinic to be opened in Trinidad.

“I did not allow my disability to keep me down. I turned it around to help others and God led me to open my own business,” she told AZPNews.com.

She was an accountant but left for the US to take care of her ailing father and when she returned, it was difficult for her to be hired locally, but was encouraged by her husband Cleaver Edwards and her two brothers to start the ostomy business.

 

Maraj-Edwards received her qualifications as an ostomy wound care nurse and stoma consultant from the Wound Care Educational Institute in Puerto Rico. She did the courses online.

Her office at Mosque Street, Caroni, has been operational since September 2015.

Patients can access Convactec, Velaport and Kowander colostomy pouches and urostomy pouches as well.

Maraj-Edwards is also a founding member of the Ostomy Association of Trinidad and Tobago (OATT) which was started with an ostomy care nurse and the first ostomy patient in T&T.

Patients and Covid-19

Maraj-Edwards told AZPNews.com that there were about 4,000 people in the country who use pouches, the majority of whom are cancer patients – approximately 60% and that number was increasing daily.

Up until last year, Maraj-Edwards has treated patients at home and at hospital, in T&T.

She said, “I have treated many persons who were in need of a stoma bag. Apart from having a medical issue, persons also just do not know what to do and where to get help so I do a lot of consultation as well.

“In all my years of treating patients, my most traumatising experience was treating those in the hospital under police guard. Imagine, having to go and change stoma bags for patients surrounded by police officers with guns!”

As a medical consultant, Maraj-Edwards also has to deal with the reality that about 40% of her patients eventually pass away.

She said since the Covid-19 pandemic, she has stopped visiting homes and hospitals, but patients can still visit her place to receive treatment.

Maraj-Edwards was currently treating ten babies, about 30% of patients are between ages 20 to 50 and 50% are above the age of 50 with at least five per cent having a bowel obstruction.

In treating patients, Maraj-Edwards cleans the stoma area and fits the pouches for patients. She also teaches patients and family members or caregivers how to conduct the procedure themselves.

She advises not to pity the patient or show any scorn when taking care of them.

Usually, she would like to chat with patients before surgery to ease anxiety and fear that accompany such procedures as well as to educate them on the after-care.

“They will go into the surgery with a more positive mindset and the end results are more positive,” she said.

In treating patients who also contracted Covid-19, Maraj-Edwards told AZPNews.com, “We allow a relative to come in and we speak with them. They bring a picture of the stoma so that we can see what type of bag they may need. When the quarantine period for the patient has passed, then we deal with them directly. That is when they can come in to us.”

She still makes trips to Tobago since the island does not have a stoma supplier.

Pouch availability

All her supplies are imported and she is one of the few people in Trinidad from whom the specialised items can be sourced.

Sometimes, bags are available at the hospitals but on many occasions, they are not and that is why patients seek out Better Life Ostomy Care.

Most have personal medical insurance which works well for the patients in terms of financial compensation.

Others would either fund the supplies themselves or in the past would have requested a grant from the Ministry of Social Development.

It costs approximately $550 for a monthly supply of items Maraj-Edwards told AZPNews.com.

On previous occasions, she said she would sign a letter for patients to take to the ministry to receive their grants but at all times, the patients never returned.

“The cheque would be made out in the patient’s name instead of my business and they would go, cash the cheque but they would not come back by me to get their stoma bag. Unfortunately, there are a lot of dishonest people out there,” she said.

Maraj-Edwards said, “Many more people are having surgeries and they are looking all over for bags. They are anxious and lost and we would like to help them because I was once like that.”

She encourages all ostomy patients to persevere and that negative initial reactions were common.

Maraj-Edwards thanked her husband Cleaver for being a pillar of support throughout the years.

She is hopeful that soon, she would be able to have a recovery home for ostomates and was working towards achieving that goal.

For more information about ostomy and ostomy care call 308-6709 or 472-5878 or visit Better Life Ostomy Care on Facebook.