Ella Alston

Ella Alston's Story

My late husband was the only family member left in his immediate family. I have no one to accompany me to the cemetery when I visit. He was only 55. He started associating the hospital as a place to rest.

My husband passed June 1, 2019, from complications from Crohn's disease, which turned into small bowel cancer. I knew little to nothing about Crohn's disease and nothing about small bowel cancer. There is no direct treatment for small bowel cancer. I believe the African American population needs to be more inclusive in learning about the risk factors before the danger happens. Sometimes, doctors are so busy that they do not get a chance to explain everything they need to. I never thought my husband would die at 55 years old.

I think after being diagnosed with Crohn's and Colitis diseases, the patient and his family should be sent to classes that teach the risks of both diseases, just in case there are gaps in the patient care exactly like my husband's case. There were gaps in his care because he was a caregiver to his mother and father. My husband didn't know how to effectively care for his parents but he tried.

As an African American female, it feels like my illness and my husband's illness weren't as important as COVID. Although, COVID has helped initiate a lot of work-from-home options, which is excellent for those who can do it. However, at the time I needed to work from home, to keep my job, the work from home program didn't work out for me, it wasn't an option for me. I was told I couldn't work from home because of the privacy of Social Security Numbers. If I was allowed the option to work from home maybe my husband would still be alive if I didn't have a break in service and income. 

My husband passed away about a year after his mother passed in March 2018. He cared for his mother when he needed a caregiver himself. My husband was not going to refuse to take care of his mother. He put his health in jeopardy by placing his mother and father first. He loved his parents and that's what he was going to do, no matter what. I loved my husband, and I lost him. Did I lose him due to a lack of knowledge, or not being informed? I feel really dumb that I didn't know more about his illnesses.Because of the gaps in his health care, which people call noncompliance, he died because he cared more about his parents more than himself. I tried to convince him to think about both him and his mother.

I never knew he was in danger of getting cancer or dying. Things were happening so fast and I didn't know what to do for my family. The next thing I knew they were all gone. It seemed as though I was in some sort of fog as if I was in another world. The doctors ignored me when my husband was dying, I didn't know what questions to ask. I was very quiet, I become quiet when I am scared and I didn't know what was going on, especially if no one is explaining things to me. 

I felt like I failed my husband, I failed my family. I watched my husband suffer from dual illnesses or diseases. 

We know everybody's cancer is treated differently. Everybody's cancer is different, you don't use the same treatment for everyone. 

Family dynamics should play a significant part in the treatment.

I miss my husband; he was a good person. We must make the best of the time we have here on earth. Crohn's disease robbed us of that time we had to share with each other. In May and June 2019 I watched my husband suffer. He battled two illnesses: Crohn's and cancer. I can't believe he is gone. We were together 30+ years. I wish to talk with Congress about gaps in care, reasons and corrections for noncompliance status, and caregiving to the sick family members or friends when the caregiver themselves are sick.”

Ella Alston's Advice

Seek help as soon as possible. Try your best to understand everything about colon cancer. I think more media will help with screening. Please fight for more awareness.