If you think talking about sexual health and colorectal cancer is uncomfortable, then keep reading. This blog is for you.

Paula Chambers Raney, a stage I colorectal cancer survivor, Fight CRC Ambassador, and fierce advocate, shares her personal story about sexual health and colorectal cancer. She has tips to bring intimacy back into your relationship, advice on how to turn your libido around, and suggestions for how to make sexual health and intimacy a priority in your life.

Paula unquestionably believes that talking about sexual health and intimacy when dealing with colorectal cancer surgery and treatment takes the taboo out of these topics. She also believes people need to become comfortable talking about these topics because they are an important component of quality of life in survivorship.

Prioritizing Sexual Health and Intimacy

“Sexual joy after colorectal cancer has been a real journey of discovery for me,” said Chambers Raney, who experienced symptoms of body dysmorphia after her surgery.

She received her colorectal diagnosis in the emergency room, and her immediate main concern was survival. She remembered thinking about having an ostomy and wondering about foods she might never be able to eat again. But at no point did “Will I still be able to express myself sexually?” appear on Paula’s radar of questions to ask her medical team.

She realizes now that sexual health and intimacy are as critical as the other thoughts that went through her mind that day. “Today, I know it should have been a question at the top of the list. My body was about to change forever.” Paula wishes she had more information and knowledge about how her sexual health would be affected after her surgery. “I am a sexual being in a loving relationship. It’s part of the way I communicate love, and it’s one of life’s true pleasures,” says Paula.

Sexual Health and Intimacy Are Essential to Quality of Life

Grateful to be alive after her resection, Paula also realized that sexual health and intimacy was crucial to her quality of life and overall well-being. However, she wasn’t quite ready to bring sexual health and intimacy back into her relationship. As Paula healed from surgery, she felt that sex was awkward and uncomfortable.

“I was constantly in my head, making false judgments about how I thought I looked; what my partner saw: My body was so thin. I had staples, bruising from IV sticks and blown-out veins, and that darn port still bulging in my chest. I had chapped lips and dry hair. I didn’t feel good about my new body, and I didn’t know what to do about it.”

“Of course, I was telling myself cruel untruths,” Paula said. Fortunately, she realized that she was still reeling from the shock from her diagnosis and surgery, and she needed help.

Taking Steps to Improve Sexual Health and Intimacy

“I knew the first thing I had to do was talk to someone I trusted, so I made two appointments: one with my OB/GYN and one with my behavioral therapist.”

Paula felt fortunate to have a healthcare team that was able to help with pelvic floor therapy, creams for sensitivity, and a prescription for antidepressants to help with hot flashes and mood. “These things took time and patience to get right,” she said.

An important step forward in Paula’s healing came from a conversation with her wife. They were both vulnerable, yet they could talk about what they each wanted out of a sexual relationship after all they had been through together. Paula stresses there are many ways to express physical intimacy.

“When you have honest conversations about comfort levels, pain, fear, and body anxiety, it helps break down walls of embarrassment. It took away that awkward ‘taboo subject’ feeling.”

Paula affirms the importance of re-establishing relationship roles. “We were able to start the transition from caregiver and cancer patient to spouse and partner,” she said.

Finding Your Way Back to Pleasure

Counseling was essential in helping Paula get through this difficult period. She and her wife worked together, attending couples therapy and intimacy coaching.

“It was suggested that we look into ways to stimulate each other and bring back arousal to areas of the body that had become painful or affected by cancer treatment.”

She had no idea of the extent and variety of devices available to help her on her journey back to intimacy.

“Finding your way back to pleasure is a discovery process. Ways you may have found pleasure in the past may not bring you the sexual joy you once had,” Paula said. She took time to find out more about her own needs, and considered how she could be more proactive in discovering new, more enjoyable ways to explore sex and intimacy.

Paula also practiced ways to raise her self-esteem, such as exercise, drinking lots of water, affirmation, medication, and breathing exercises, which helped her feel comfortable in her own new body. “I am less stressed, which in turn, makes intimacy more pleasurable. I truly believe that my body is a precious gift. My sexual energy is natural resource of joy and pleasure,” said Paula. She is grateful for her “perfectly imperfect body.” She has decided to accept herself as she is, which in turn has given her the ability to allow and welcome sexual pleasure back into her life.

Sexual health and intimacy after colorectal cancer may feel like it’s not an important topic as you are working toward survival, but Paula advised that it is an integral part of love and relationship as you heal mentally, physically, and emotionally from the effects of colorectal cancer.

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Resources and Shopping Lists

Paula recommends these podcasts, shows, and products which were exceptionally helpful and educational. Paula shared a few of her favorite sexual health and intimacy items. She hopes to provide assistance, education, and inspiration to survivors grappling with sexual health and intimacy issues after colorectal cancer. She even provided suggestions that she hopes spark curiosity and helps people reclaim their sexual joy!

Podcasts

• We Can Do Hard Things with Glennon Doyle: Orgasm: Pleasure is the Final Frontier with Dr. Lori Brotto
• Sensual Self with Ev’Yan Whitney: Episode 67: Sensual Sex Ed (with Goody Howard)
• The Dildorks: Sex Drive Nose Dive
• Speaking of Sex: Finding New Pleasure Pathways
• Ten Percent Happier with Dan Harris: #435. Mind-Blowing Sex | Dr. Lori Brotto

Netflix programs

• Netflix: The Principles of Pleasure
• The Netflix Series: Sex Explained

Products

Paula highly advises that you speak to your doctor about medications you are using and any pain or discomfort you might experience. Remember to always use the recommended hygienic care steps for each product.

Paula also highly recommends purchasing products at local shops, such as Adam & Eve®, where the people who work there understand the products and are happy to help you find what you want and are looking for. While not all products are available on the Adam & Eve site, all products are available online, and we’ve included links to help you find them!

Pjur med: Natural Glide is recommended for people with dry and sensitive skin. It protects and soothes dry skin. It’s also gentle on sensitive areas, so it’s ideal to use with toys. You can find it online, and at some Walmart stores as well as Adam & Eve.

Butterfly Remote Venus G was recommended after pelvic floor therapy as a way to explore my own personal sensitivities and to gauge what my body finds pleasurable now as opposed to trying to get back to something I thought I had lost. Also available through Adam & Eve, the butterfly can be used with or without a remote, and it comes with many settings.

Eve’s Bliss Vibrator was a popular item recommended by the friendly staff at Adam & Eve in Houston. All agreed this one is a shop favorite. The design is made to stimulate two zones at once with its dual motor.

The Lay-on Rabbit is another very popular recommendation, and it can be used alone or with a bullet vibrator like our No. 5 pick.

The We-Vibe Tango X is another great choice, which has eight types of vibrations and is also waterproof. The We-Vibe Tango X is also through Adam & Eve.

Wicked Toy Fever, Toy Breeze, and Toy Love are all natural and widely available. They provide long-lasting play with safe formulas.

Destiny Maia Novelties is another fantastic product that everyone can use. It provides a powerful suction and both vibration functions are controlled separately on a simple interface with dedicated buttons, so it is easy to customize for personal preference.

There is no typical financial situation

Karen Wehling received her stage IV cancer diagnosis just four months after her husband’s unexpected death. While grieving the recent loss of her husband, she had to maneuver a new diagnosis, new treatment plan, and new financial concerns.

While her situation wasn’t the typical situation of someone with colorectal cancer, Wehling believes there are no “typical” cancer situations. There are, however, common struggles – and, unfortunately, finances are among them. Here, Wheling shares a few of the lessons she’s learned about the intersection of finances and colorectal cancer.

1. Your health is your first priority. (But don’t neglect money questions for too long.)

“Think about your health first,” Wehling said. “There are ways to solve many of the money issues that can come up.”

But don’t put off money talk too long, Wehling said. She does wish she paid attention to financial matters earlier than she did, and she wishes she knew to apply for disability insurance sooner. Wehling thinks of a friend with cancer who did what she wished she had: First, she created a treatment plan with her care team, and soon after, she talked with her insurance provider to learn what was covered and then found financial support that could fill in the gaps. Focus on your health first, Wehling advises, then turn the focus to finances. Programs like Medicare and Social Security Disability Insurance may offer help.

2. Assemble a team of people willing to help you

This team may include the social workers at your hospital who can connect you to all kinds of resources at the hospital and in the community, and it may include friends and family who may be financially savvy or willing to help you do research. Consider hiring a lawyer, who may assist in applying for disability insurance. Wehling also said that bringing in mental healthcare support can be crucial as well. The stress of cancer combined with the stress of financial concerns can be overwhelming, and therapy can offer valuable support. You don’t have to go through this alone.

“You’d be surprised how many people are willing to help you when you ask them.”

3. Think of new possibilities, even ones you didn’t entertain before

In just one year, Wehling lost her husband, got a stage IV cancer diagnosis, and lost her ability to work. She had to entertain options that she didn’t consider before – and that, to Wehling, was the key to finding solutions that worked.

“You have to be willing to think out of the box. Suddenly, I had no money, and I couldn’t work. What can I do?” Wehling asked. “Your life may not be what you thought it would be, but be open to the things that change.”

Even if everyone’s situation differs, almost everyone with cancer faces new questions and uncertainties. Wehling moved in with her daughter, and together they pooled their resources. It’s a situation that’s worked out very well for her family.

4. Connect with others who are going through similar things

Wehling went online to find others who were dealing with colorectal cancer, especially through groups like Fight Colorectal Cancer and COLONTOWN. Connecting with others with similar struggles and questions was very helpful and reassuring. Wehling also began to mentor people just starting their cancer journeys, offering her insight, support, and compassion.

“Support groups are good for when you’re scared and so unsure of what to do. They’ll give you the emotional support you want, and sometimes, they’ll teach you about places you can contact for help,” Wehling said. “When you talk to other people who’ve been through similar things, you feel more like you can go through these, too.”

5. Don’t take “no” for an answer

If you initially get turned down for financial support, keep fighting. Wehling learned that sometimes people are initially denied for Social Security Disability Benefits, but they can apply again and may get approved on subsequent applications. (A lawyer may be helpful here.)

“Don’t give up and think that the world is ending,” Wehling said. “Try to find the light. For me, the light was all the people willing to help me through this.”

Resources

The Patient Advocate Foundation Co-Pay Relief Fund offers a metastatic colorectal cancer co-pay fund, which is currently closed, but offers an opportunity to “get notified” when new funds open or current funds re-open. The Patient Advocate Foundation Co-Pay Relief Fund also has a metastatic colorectal cancer health equity fund, which is currently open to patients within specific ZIP codes who must meet other eligibility requirements, as well.

The Cancer Support Community posted a blog How to File a Health Insurance Appeal for a Denied Claim: What Patients Need to Know, which contains helpful information and tips about your right to appeal, preparing an appeal, and getting help in the appeals process.

The National Comprehensive Cancer Network^® (NCCN) provides a downloadable, helpful tool for patients in need of financial assistance.

When Molly McDonnell, Fight CRC’s Director of Advocacy, sends you a note asking if you’ll testify before the New Jersey State Senate in support of legislation that would increase access to colorectal cancer screening, you don’t say no. You may want to. You may mentally come up with 10 reasons in less than 30 seconds why you can’t do it.

Close your eyes. Believe in the power of your story. Just do it.

Testifying was one of the most scary, yet tremendously gratifying, experiences I have ever had.

For real: I knew at the moment Molly asked me (with a quick check of my calendar) that I COULD attend the 11am Senate Committee Meeting. But immediately after saying I would, I had cold feet. I committed, but I was terrified.

I am an unlikely – dare I say – reluctant advocate. I am completely unfamiliar with most political processes. I mean, who wants to admit their ignorance? It’s embarrassing.

Nevertheless, I agreed to go before the New Jersey State Senate Commerce Committee to testify in support of S2305, legislation that requires health insurers to cover colorectal cancer screening beginning at age 45 (as recommended by United States Preventive Services Task Force) and removes out-of-pocket costs for people needing a colonoscopy after a positive noninvasive screening test.

Here’s why: When you tell your story to your elected officials, the impact is far greater than random facts and statistics read from a sheet of paper. Your testimony breathes life into those statistics and reminds our elected officials that the policies before them impact real people.

Reluctant, yet excellent, advocate

My husband, Joe, has spent the past 27 years humoring me. Joe is quiet and doesn’t say much. He is the opposite of me. And four years ago, both of our worlds got turned upside down when he was diagnosed with rectal cancer.

At first I just asked him to come with me – to help me figure out where I was going. When he agreed, I said, “Well, if you’re going, you really need to speak as well.” He should have seen that coming.

I told him it didn’t need to be a long speech. We had three minutes each to speak. He just needed to tell his story. I was thrilled when he gave me the short draft of his speech. This is progress! Joe was diagnosed four years ago, and until Thursday, June 7, he had never told his story to anyone.

I wrote my draft. I read it out loud (I cried toward the end, and I was OK with that because I thought it was good to get the emotion and tears out of my system). I did not get them completely out apparently.

Later that morning, we drove to the State Capitol. Between finding parking, navigating to the building, floor, hall, and then room we needed to be, by the time we got there, I already needed a nap.

As I walked into the Senate Committee Meeting room, I felt insanely intimidated and like I didn’t belong there. I just wanted to go home.

But instead of running for the exit, I persisted. The meeting was late getting started and the colorectal cancer bill was the second to last to be considered. It was going to be a long day.

Telling our Story

More than two hours later, the bloom far off my bud, and it was time for the committee to consider S2305. We were called up to the dais, and a representative from the American Cancer Society Cancer Action Network (who works closely with Fight CRC!) spoke first. Next, a gastroenterologist who lost his father to colorectal shared his story.

Then it was my turn: my testimony was a sheet and a half of paper. I read it, but looked up every so often to make eye contact. Each time I looked up, I saw the Senate Committee Members looking back intently at me. I did a great job of reading my testimony, loudly, clearly, and expressively. I was so proud of myself. Until I got to the final paragraph:

“We respectfully request you pass this bill: If Joe had been screened at age 45, we could have had a completely different outcome. Again, while we are thankful that Joe is here today, every day is a struggle. Every day cancer is on his mind, my mind, and the minds of our kids. This battle never ends: even as he is cancer free today.”

That last sentence devastated me to say out loud. “The battle never ends.” It just doesn’t.

Joe was extremely emotional as he started to read his testimony. His face was red, and he could barely speak. His voice choked with emotion. I squeezed his fingers hard to encourage him to keep going. Before we knew it, our time at the dais was over. The senators thanked both me and Joe for our bravery and for sharing the most personal parts of our lives with them.

Advocacy and attitude of gratitude

I am so proud of Joe for telling his story – and this was just the beginning – he was recently interviewed by our local news station. I am so proud of myself because in those moments of Joe and I telling our stories, I could see empathy, compassion, and caring in the faces of the senators. At Fight Colorectal Cancer, we always say, “No one fights alone.” In that moment of testifying, I felt seen, heard, and supported.

The Committee voted unanimously to approve the bill. In the fall, the bill will need to clear another Senate Committee and be approved by the full Senate. The same process will need to happen in the Assembly, after which it will be sent on to the Governor for signature.

There aren’t a whole lot of things I have done that I am supremely gratified by, but appearing to testify in support of bill S2305 will always be one of my proudest moments.

While it feels uncomfortable sharing such personal details of our lives, I am 100% sure that because we did, we made a difference – a difference that may be too late for Joe – but it will make a huge difference in the lives of those who can get a colonoscopy covered by insurance at age 45, or who won’t have out-of-pocket costs if they a colonoscopy after a positive, noninvasive test.

Our testimonies will save lives. Sharing your story helps others. And when you share your stories with elected officials, they feel the impact because they now have a face with your story. It becomes “real.” They learn details of your struggles that they would have never known about had you not shared your personal story.

Say “Yes!” to advocacy

Do the thing that scares you: Say “Yes!” when someone asks you to testify before your legislature. Share your story in your local community or even among friends and family. No one else is going to do this work if we don’t. Sharing your story may not be the easiest thing to do, but it does make a difference. Plus, it’s empowering! I promise you won’t regret it!

Pro tip: Become involved with the Fight CRC advocacy community. Sign up to be an advocate to get notified about opportunities to engage in your state. There are so many ways to support the colorectal cancer advocacy community. Take action or donate. We are stronger together. We will make progress faster together. No one fights alone.

sign up to advocate

The dictionary defines survivor as “a person who copes well with difficulties in their life.” You are a survivor from the moment you are diagnosed. Every personal cancer experience is unique and so incomparably hard.

I was diagnosed with breast cancer on Feb. 4, 2020. I didn’t feel like a survivor at that moment, before or after surgery, or during treatment. I, for sure, don’t think I was coping well. In fact, it took me a while to pull it together. And I don’t mean “a few hours.” I mean several months. Several CT scans and surgeries later, I am cancer free.

Then two years later, when I finally felt mostly over the trauma of my cancer diagnosis – because you never are fully over the trauma – my brother and I had to tell my mom that she had cancer. The flood of emotions came back, and our whole family was impacted physically, emotionally, spirituality, and socially.

As a family, cancer impacted us physically, emotionally, and socially. We all had moments where we fought hard to move past the fear of cancer because we all knew we had to keep moving forward. Some days we felt like we were stuck in tire ruts and spinning. But it was OK. We may not have moved forward those days, but we sure didn’t go backward. Some days, it’s OK to stay where you are.

Cancer Survivorship and Never Losing Hope

Moving forward after a cancer diagnosis is a process: Every day, every month, and every year is different with fears you didn’t have before the diagnosis, but now you wake up to every day. But I am determined to redefine my own story of hope as a patient and caregiver. There is a saying in Tibet, “Tragedy should be utilized as a source of strength.” No matter what sort of difficulties we endure, or how painful the experience is, if we lose our hope, that’s our real disaster. Part of living as a cancer survivor is never losing hope.

Currently, my goal is to reach five years cancer free. Until then, I am going to enjoy all the colors of life and embrace all of it – even its flaws. It’s my choice every day to hold on to hope, because what I have learned is that hope is the gift you create for yourself. Hope is the tenacity and the relentlessness within yourself that keeps you fighting. Hope pushes you on. Some days, when I don’t want to get out of bed, hope tells me I have to keep going. Two years ago, I found a tiny seed of hope, and shared it with my family. That seed has been nurtured by the love and support of friends, fellow survivors, and family. It takes time, and it takes a community to thrive. That is the miracle of hope.

For some, you may be in the throes of resistance and striving for recovery. You may be disgusted, discouraged, and frustrated. You may be furious because you don’t want to be strong and you don’t want to fight, and it’s not fair that this battle is even your battle. It’s not easy; and it’s not the same for everyone. But when you take a breath, and you realize and acknowledge that this is how it is, you can choose to find that seed of hope – and it may feel buried, but I assure you, it is in you – and share it with the people who support and love you. It takes dedication and work to nurture that seed of hope. Some days that seed of hope may be getting out of bed and starting your day. Sharing a smile with someone during chemo may give them hope they desperately needed that day. Telling your story to a fellow survivor and giving each other a hug may provide hope to someone when they need it most and remind you to keep moving forward.

As cancer survivors and as caregivers, we share a bond. We all know what it’s like to look into the eyes of someone who is relentless and never gave up, and feel the gratitude of the power of hope.

Celebrate this month with your people – your tribe – your family and your community. Never lose hope and never forget that you inspire us to keep going.

Diarrhea. Rectum. Stool. Ostomy. In a culture where adults feel shame or embarrassment about anatomy and body functions, it’s no wonder that people with colorectal cancer can internalize that shame. Especially for people with stomas and ostomy bags, this creates a negative body image, which can compromise mental health at a time when cancer triggers plenty of stress already.

Julie Brown, a stage III survivor and Fight CRC Ambassador, wants people to know what she wished she learned sooner: Being open with a community of fellow survivors can empower you to feel more positive about your body.

“When you hear you have cancer, it already has such a huge effect on your mental health. You’re thinking about so many things, potentially—about losing your life or the impact on your family. A lot of times, people don’t think about how cancer affects your body image, too,” Brown says. “It’s not a cancer most people want to talk about. Not that any cancer is glamorous, but colorectal cancer involves things that are on people’s taboo list.”

Brown says that doing the thing that most people don’t want to do—being open about what it’s like to have colorectal cancer—can be freeing. This openness changed her cancer journey and improved her mental health.

Being Young and Active with an Ostomy

Brown got a permanent ostomy in her early 30s, which compelled plenty of questions with no good answers: When do you tell someone you’re dating that you have a stoma? How do you introduce the subject to friends? How can you navigate an active lifestyle—hiking, swimming, going to concerts—with an ostomy bag?

For seven years, Brown didn’t mention her ostomy to others outside her closest circle of friends. She remembers the night when that changed: One evening during a conversation with other people with colorectal cancer, she heard people say that the humiliation of their ostomy was so overwhelming that they isolated themselves, and some considered suicide.

“Hearing that made me so sad because I thought, I never talked about [my ostomy] with people I don’t know. I’ve never shown it, and it’s nothing I’m open about. But I’m grateful for it! It’s given me my life back…It’s hard, and it’s an adjustment, but at the end of the day, it’s given me all these beautiful things. I talk about it openly now. I want to educate people and for people to understand that it’s not gross.”

Connecting Through Honesty and Openness

Dr. Jana Bolduan Lomax, a psychologist, wants people to understand how important it is to acknowledge and accept the full complexity of having cancer. Being honest with yourself and open with others about how you do feel—not how you should feel or how you think others want you to feel—is crucial to mental health and fostering deep relationships.

“Manage the tyranny of positive thinking. This whole popular culture idea that we really must stay strong and positive to fight our cancer, and somehow feeling sad or scared or hopeless is going to allow cancer to grow…there’s no evidence to support that positive thinking or remaining optimistic at all times leads to improved outcomes. In fact, not feeling your own emotions or not having a place to express them can be far more stressful on your body than the actual feeling of any anger, sadness, strength, or optimism,” said Dr. Bolduan Lomax.

Finding community with people who allow you to be open and fully yourself—without shame, without expectation—can create positive effects on mental health. Shame silences and isolates us; honesty and acceptance connects us.

Owning Her Experience, Accepting Her Body

Brown decided to be more forthcoming about her ostomy, even including it in a photoshoot to show others that she had one. She says that being more upfront about her stoma and ostomy led her to be less self-conscious overall. She even feels pride in the surgery scars she used to hide. Brown regrets not achieving this acceptance earlier; she hates to think of the pregnancy photos she skipped because she didn’t want anyone to know she had an ostomy.

Brown’s honesty has led to close relationships, within the community of colorectal cancer survivors and even beyond it. Brown says that she and her now-husband began their relationship being so open—her ostomy was a discussion topic during their first date—and they’ve continued that open communication style through their marriage.

“Cancer affects every aspect of your life, so it’s an opportunity to open up and look at everything about yourself. Don’t be ashamed. [With colorectal cancer,] you already feel so self-conscious about your body, and nobody wants to admit that they need to talk to someone or that they need to see a therapist. There’s no shame. It’s good to really look at all of the things that you need, holistically and not just physically.”