Heidi

Age at interview: 42
Outline:

Heidi, age 42, tested positive for a polyposis syndrome about three years ago. After a few annual colonoscopies, at her oncologist’s suggestion, about three months ago, Heidi had a colostomy, J-Pouch, successful resection, and a benign pathology report. She is dealing with fatigue, pelvic floor issues, frequent bathroom trips, and severe food limitations. She worries about her now-teenage children, and enjoys the support of family, friends and coworkers.

Background:

Heidi is a White woman who lives with her husband and two teenage children in a rural area in the Midwest.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: A polyposis syndrome

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Heidi and another member of her family tested positive for a polyposis syndrome about three years ago. Heidi then had annual colonoscopies – the first discovered 13 polyps, the second found 30 polyps and they kept increasing. At her oncologist’s suggestion, Heidi had a colostomy about three months ago, a J-Pouch, and resection where “everything hooked up well.” She says, “it could have been worse. I could have had an ostomy. I don’t.” The best news in her six-day hospitalization was the cancer-free pathology report! She notes, they (doctor included) all cried with such good news.

The surgery has posed challenges, including fatigue, pelvic floor issues, frequent trips to the bathroom, and major issues with eating that she sometimes finds depressing. A huge lover of salads, she can’t eat vegetables or fruit (except bananas) anymore. Instead, she eats “all the fattening foods”— avocados, potatoes, pasta, rice and meat. Eating at a restaurant is now a challenge. She purposefully does not eat before going someplace where there might be a bathroom issue. She used to be that woman who would never use a public bathroom, but acknowledges, “there's no way of getting around it.”

She is happy she did the surgery, to reduce her risk of colon cancer. She watched her dad die from cancer and does not want her kids to watch the same. And if she does get cancer, she says “I am going to fight it, and I'm going to win this because I'm not doing this to my kids.” She’s confident, because as she says of her care team, “I work with the best of the best so they would help me get through it.” Her relatives understand what's going on with having a polyposis syndrome. To protect her now teenage kids, she will encourage them to have a colonoscopy when they turn 18 and to consider genetic testing. Meanwhile, she is keeping her fingers crossed for them.

Heidi has a lot of blessings. She was out of work for six weeks, and fortunately that was not a problem. She has good health insurance, enough leave time, and co-workers who were and continue to be supportive. She has a very loving family, husband and tight group of supportive friends. During her hospital stay and recovery, someone was visiting or helping out every day.

She also maintains a positive outlook on life, and while not strictly religious, she, like her family, believes that everything happens for a reason, noting, “we might not know what the reason is right now, but there is always a reason for it long down the road.”

 

Heidi talks about how she hopes her experience can help others.

Heidi talks about how she hopes her experience can help others.

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There's not much out there. And it's hard and when you go through this and you don't know. Walking through this blindly, and they give you stuff but it's really hard to know what you should and shouldn't do. Just more awareness for people, that they're not the only one out there. That there are other people going through the same thing as them. Which I find sometimes that there are-- people are going through the same thing, but everyone's different about what they can and can't put in their body and how their body reacts to it. And, just getting the word out, so more people know about it.

 

The plans Heidi and her doctor make for managing polyposis syndrome change as the number of polyps she has grows.

The plans Heidi and her doctor make for managing polyposis syndrome change as the number of polyps she has grows.

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Well it's nerve-wracking to go in to see, you know, for one-- having to have a colonoscopy is no walk in the park. And then having to wait to see how many you have, and what the next step is. And me and [NAME] always made the decision that we-- even this last time when I went in we were like, “OK, what are we going to do if—we always said that she— if there was ever more than 50 that I was going and having my colon removed.” So there's always that in the back of your head, what's going to happen then. Not going to lie, this time going in I never thought that I would have that many. Nor that I had thought that I would be on the road that I am now with having everything done. But it was worth it, and I can tell you if I would have had that the surgery 5, 10 years down the road, I don't know how people do it. It was not an easy walk in the park.

 

Heidi says that there is not enough information out there related to her specific experience.

Heidi says that there is not enough information out there related to her specific experience.

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There's really not much about this disease that that people know about. Or that-- everything you read is exactly the same.
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Yeah, so how does that feel to have not much out there?
Not very good. That's why I dec-- that’s for sure why I decided that I wanted to do this. Because I want to help people know that they're not alone and that there's other people out there that are going through the same thing. I was telling you earlier about diet. It's very hard when you ask about-- I even went to a dietitian, and they gave me the same information that I got in the hospital about what I should and shouldn't eat, is all the same stuff that people that have an ostomy. So there's nothing for people who don't have an ostomy, what they should and shouldn't eat-- just to follow the ostomy guidelines. Well, it gets hard to follow those all the time. And you wish there was more information on what you're going through then there is out there. And there's not much.