welcome to oneFAPvoice- a positively charged Familial Adenomatous Polyposis community.
- join today!
How to Talk About Colorectal Cancer with Doctors, Friends, Family, Dates, and Strangers
We all know our poop says important things about us so why can’t we say important things about poop to others? In honor of Colon Cancer Awareness Month, here’s a guide on communicating about stool and two of the organs it travels through with everyone who poops (a.k.a., everyone).
Everyone digests the info differently.
Some friends will invite you to share all of the details while others can only handle the bare minimum. Relatives may be OK learning about your diagnosis but resist hearing that they may also be at a high risk for colorectal cancer. Many dates will be super understanding but there will likely be a few who respond by listing everyone they knew who died of cancer. Just like stool post-colectomy, the way you approach colorectal cancer in conversation needs to be fluid, changing shape depending on the person and over time.
Be honest with your doctor, no ifs, ands, or butts about it.
When it comes to determining how much to share with others about your colorectal cancer experiences, the decision is entirely yours...with one major exception. Your medical team needs to know all of the details in order to best care for your health. Do not skimp on sharing any symptoms because they’re tough to talk about, you’re afraid of their underlying meaning, or you think they’re harmless.
If your (face) cheeks turn bright red at the mere mention of bowel habits, tell your doctor “This is uncomfortable for me to talk about but, I’m [insert issue]” so he/she can respond more sensitively. Have a better repertoire with your doctor’s nurses or physician assistants? Share your symptoms with them and ask if they’ll pass the info onto your doctor. Sometimes it’s easier to explain that recurrent abdominal distention or occasional green poop photographically or through writing so snap a few symptom selfies or keep a symptom journal. Share your symptoms with your doctor however makes you feel most comfortable! Keep in mind that even though talking poop is new to you, your doctor has heard it all before (it’s practically a med school requirement to get covered in some bodily fluid). You can find more great tips to help you avoid bullsh*ting your doctors here and here as well as some advice for preparing for a colon-centric visit with your GP here.
Remember that you should tell every doctor, regardless of whether or not you’re visiting them for GI issues, about your F.A.P. diagnosis. Should your doctor dismiss your GI symptoms, remind them of your genetic predisposition to digestive cancers.
Get to the bottom of your discomfort.
When you’re at ease with the conversation, it’s easier to make others feel the same. Hone your digestive vernacular (poop vs. stool, bowel movements vs. bathroom trips, colon vs. large intestine, etc.). If you’re struggling to say things like diarrhea or constipation with a straight face, invent code names. Make a list of all the questions you had about your diagnosis and surgery. What’s an ostomy and a jpouch (or a colon for that matter)? What’s the bathroom frequency like? Are there new dietary restrictions? Are any activities off limits? Consider which answers impact your daily life and are ones you want your friends and/or family to know about. Here are some talking points for discussing Ulcerative Colitis, many of which apply to colorectal cancer. Practice saying these points and terms aloud in front of the mirror, with a close loved one, and/or with other F.A.P.ers on rareCourage.
Although it’s impossible to anticipate everyone’s response to our body’s inner workings, to feel better prepared, brainstorm some answers to these top questions for ostomates and the kinds of questions this j-poucher got asked during a reddit. There are also common responses to cancer in general and suggestions for approaching them tactfully vs. like a wise ass (a route I wouldn’t necessarily begrudge you for taking). Definitely expect to encounter a few “Wait...so can you still...you know?” and “So do you have a...bag thing?”’s.
You also need to consider your conversation partner’s comfort level. Poop (and cancer) are still very “hush-hush” topics in society so there’s bound to be some discomfort but, if your friend can’t handle it at this moment, it’s important to respect that (likewise, you need to let them know you’re not up for talking about it right now). Ask “Are you up for being my sounding board?” or “I’d really like to talk about my cancer experience. Can you let me know if the conversation becomes too much right now?” Start out with brief descriptions like “an ostomy is a bag attached to my abdomen.” Let them know it’s OK to ask questions (although you may not always be in the answering mood). The more questions you get asked, the more free you should feel to go into detail if you’re so inclined. Even if someone isn’t up for talking about certain things now, that doesn’t mean you can’t start the conversation with them at another time.
**If you’re not yet comfortable with your diagnosis, that doesn’t mean you can’t talk about it. Sometimes, much like stool expelled from a stoma, we can’t control what’s going to come out but, for the sake of our health, we need to put it out there. If you’re feeling overwhelmed, appoint a loved one to be in charge of updating your inner circle about your health (just make sure you explain what kinds of things are OK to share).
Rear end the conversation.
You don’t always need a discussion exclusively dedicated to colon cancer from beginning to end to share your digestive wisdom. Sometimes opportunities to casually insert your colorectal experience into a conversation arise. For example, you can use mealtime inquiries about dietary restrictions as a chance to explain that “X years ago, I had colon cancer and needed to have my colon removed. Now I have a(n) ostomy/jpouch which allows me to eat a myriad of things but, some foods are still hard to digest.”
Crack them up.
Making colorectal cancer the butt of the joke (see what I did there?) can help ease you into talking more intimately about it and reminds friends/family that even though it’s a serious disease, it’s OK to casually discuss cancer’s absurdities. I like to remark that my favorite part of having had colon cancer is that I can say it’s a shitty disease, literally. After chuckling, people often compliment me for being in a place where I can look at cancer in such a way which I use as a trojan horse to share details about my cancer experience. Not convinced of humor’s power? Read about why this colorectal cancer-er incorporated comedy into his cancer narrative.
Did a hilarious cancer joke from above miss its mark and now everyone’s staring at their shoes? Again, because poop and cancer are generally considered taboo subjects, awkward moments will inevitably occur when talking colorectal cancer and living with its accident-prone aftermath. Disclosing an embarrassing health-related story shows the person you’re conversing with that you realize colorectal cancer is an uncomfortable topic while providing insight into your post-diagnosis life. I can’t tell you how much mileage I’ve gotten from the mortifying time I cursed out my new rabbi when under the influence of heavy pain meds (or how many chances it gave me to explain NG tubes and small bowel obstructions).
When dating, there’s only so long you can hold it in.
Although you don’t owe anyone beyond your doctor an explanation of your health history, if you’re getting serious with a date, you’re getting to a place where you can discuss serious medical histories. When it comes to the timing of telling a significant other about your colorectal cancer experience, it’s really a gut feeling. Some people like to put it out there right away, others advise waiting a few dates so you can build trust and let your date know who you are without immediately ascribing any labels. Try to broach the subject before you get too intimate so no one’s caught off guard by scars or bags.
Be prepared to explain your disease and subsequent treatment and after doing so, give your date a moment to process. Emphasize that you’re still able to enjoy life to the fullest. Show that you’re comfortable in your skin, scars and all. Confidence is sexy! Putting an allusion to your health challenges (“I’ve been in the oncology waiting room”) or a picture that shows your scar and/or ostomy in your online dating profile can spark the conversation without too much hassle. For flings, you don’t need to go into too much detail (“Just a heads up, I had surgery a few years ago but I’m fine now”). Here are some tips and lessons learned from dating with an ostomy that translate to dating with a colorectal cancer history.
No need to butt out of the conversation post-treatment.
Many well-meaning friends and family assume that the conclusion of treatment means your experience with cancer is finished. However, we all know what happens when you assume. The mental and physical side effects of cancer linger (no one ever learned to navigate colonless living in a day) and it’s OK to talk about them after treatment ends. Use doctors’ visits or screenings as a segue (“I have a scope coming up and have been thinking about cancer a lot lately.”). If there’s no health care appointment in your near future (lucky you), reference a recent cancer story in the news, share a blog post/email that expounds upon your feelings (or this article on the need for support post-cancer), or be direct about needing a friend to talk to about the aftermath of cancer. Here are some extra tips to bring your loved ones back into the conversation.
(News)Feed your digestive tract.
Opening up about your health experiences online is one way to get your network to “like” “tweeting” about colorectal cancer. Before expanding your use of colons beyond “:” on your social pages, it’s important to consider the privacy ramifications and your goals for virtually disclosing. Keep in mind that posts can go viral (and conversely, can go unnoticed). Some people choose to to post their illness online as, even though it’s not their defining feature, it’s a significant experience that feels odd to omit from their profile. It creates new avenues to connect with others who can relate while efficiently keeping your existing social network up to date.
Not sure how to start? Sometimes, pictures help people understand in a way words can’t so try taking a few snaps of the scenery at a doctor’s appointment or a scar/ostomy selfie if you’re so inclined. The internet pretty much exists for cat(scan) pictures! For inspiration, check out how other cancer-ers “virtually came out” here and here.
Please note that you don’t necessarily have to disclose your diagnosis to still talk colorectal cancer online. For example, you could just post “Today’s a big day. Wish me luck.” or “Could use some positive vibes” to communicate with members of your network in the know. Alternatively, you could share articles about colon cancer/ostomies/jpouches/F.A.P. to help raise awareness. Disease-specific online communities like FAPvoice can ease you into uploading your story if you’re not ready to go public quite yet.
You’re not a party pooper.
Just because you’re talking about some heavy sh*t doesn’t mean that you’re a burden. First of all, family and friends care about what’s going on in one another’s life and in your case, that sometimes happens to be cancer-related.
Secondly, sharing really is caring especially when it comes to colorectal cancer. Perhaps in talking about your diagnosis at an age far younger than the norm, you’ve convinced a young adult to get the change in her bowel habits checked out. Maybe your story resonates with another cancer-er and diminishes their feelings of isolation. Asking your family to talk about their cancer history and encouraging genetic testing can thwart colon cancer before it begins in your loved ones. Mentioning your recent scope and the simplicity of the procedure reminds relatives to stay up to date with their screenings. Find advice on discussing colorectal cancer and genetic testing with your family here, here, and here (and as an added bonus, here are tips for talking about hereditary colon cancer and ostomies with kids).
Since you could be saving lives by talking about colorectal cancer, in a sense, you’re really the life of the party (and if you’re feeling guilty about monopolizing the conversation, you can always send this awesome, very fitting thank you card)!
If you finished this guide and still are hesitant to discuss your colorectal cancer experience, read this note by another colorectal cancer-er.
expertly curated content related to this topic
When and How to Perform Genetic Testing For Inherited Colorectal Cancer SyndromesThe 2013 NCCN Clinical Practice Guidelin...
Clinical Practice Guidelines for the Prevention, Early Detection and Management of Colorectal CancerExecutive Summary Colorectal Cancer con...
How to Manage a Patient with Multiple Adenomatous Polyps: History and Clinical Features, Genetic Testing, Surveillan...Adenomatous polyps are found on screenin...
Assessment of Mucosal Inflammation and Blood Flow in Response to Four Weeks’ Intervention with Probiotics in P...BACKGROUND : Pouchitis is a common and t...