Kelsey is a 25-year-old woman enjoying a great sex life with the love of her life. Not so unusual perhaps, but as a person living with Crohn’s disease, Kelsey’s road was bumpier than most. She’s had countless embarrassing moments and difficult conversations, and sadly, missed out on some key dating years because of the symptoms and complications of the disease.
When Kelsey first got sick, she was in a long-term relationship. Her constant vomiting and abdominal pain was destroying her sex life.
“It was hard for me to get in the mood when I was feeling so crappy and uncomfortable. I didn’t feel attractive because I was vomiting three or four times a day, and I just felt gross. This caused problems in our relationship and eventually we ended things,” says Kelsey.
In the years that followed, through multiple surgeries and different medications to get her disease under control, Kelsey struggled with her body image. She didn’t tell many people about her disease because she was embarrassed, and she especially avoided intimacy.
“Being in the pain and discomfort I was in, I had no intention of being intimate with anyone because I was afraid that while in the middle of it, my stomach would act up and I would have to run to the bathroom … or worse: not make it in time,” she recalls.
“I didn't date much due to this. It was easier to not involve anyone else in this craziness.”
Not the sexiest disease
The craziness Kelsey describes is hard to imagine for people not affected by a chronic illness, let alone one involving bodily functions most of us like to keep private.
Crohn’s disease and ulcerative colitis are autoimmune diseases that inflame the lining of the gastrointestinal tract and disrupt your body’s ability to digest food, absorb nutrition and eliminate waste in a healthy manner. People with Crohn’s and colitis experience abdominal pain, cramping, gas, bloating, fatigue, diarrhea (possibly bloody) and loss of appetite. Medications and surgery are common treatments that may put the diseases into remission, but there are currently no cures.
Passing gas at the wrong moment is quite common for people with Crohn’s and colitis, and they are often justifiably anxious that something more than air will escape in the heat of the moment. Bowel control is a persistent concern that can be made even more acute by stimulation.
Other common libido-killing factors include negative body image, fatigue, medication side-effects, and rectal pain from hemorrhoids or fissures. Fear of rejection often results. Less common inhibiting factors include injury to pelvic nerves from surgery, anxiety over the presence of an ostomy, and fistulas.
All-in-all, not the common plot complications of your latest Hollywood romantic-comedy.
An emotional rollercoaster
For Rachel, a 24-year-old nursing student in Kamloops, BC, her diagnosis brought a mixed bag of emotions. Rachel and Nick had become engaged a few weeks before she became suddenly and seriously ill with what seemed at first like gastritis, then pancreatitis, then finally Crohn’s disease. At a time when romance should have been swirling around them, instead their relationship was being tested as Nick had to pick up the brunt of the household duties - including caring for their daughter - and physical intimacy fell off.
“Emotionally, Crohn’s is a bit of a rollercoaster,” says Rachel. “There were days when I felt really close to Nick for being there during my illness, and there were days when I was depressed and angry at the world. Thankfully, we made it through.”
What Rachel says helped the most was learning to communicate, respect each other’s boundaries and redefine intimacy when the disease limited the possibilities.
“Physically, we were intimate when I was well enough to be. Obviously when I was really sick we were not able to have sex, as I felt nauseated and fatigued. During these times we had to rely more on the emotional part of intimacy. We had to communicate our needs and trust each other.”
For Nick, he’s mostly just grateful Rachel is alive. Her disease came on so suddenly and severely, and was diagnosed at one point as pancreatitis, so he was afraid of a much worse outcome.
“My fear was that she was going to die of pancreatic cancer. Once I realized that it was autoimmune and not cancerous, I calmed down. I was still really concerned though, because Rachel was so scared,” he says.
Nick says aside from the times Rachel’s Crohn’s is flaring up, their sex life hasn’t changed: everything gets back to normal when she’s well. However, he has learned that reaching out to others in the same boat was helpful. Nick was able to talk with a co-worker with colitis, which helped, and he accessed online resources.
Developing a sense of humour about it was also a must.
“Rachel gets mad at my jokes sometimes, but I think if you don’t have a sense of humour you’ll never survive in this world - with or without Crohn’s or colitis. Not to mention some of my jokes are a real gas,” Nick says, as Rachel groans in the background.
It does get better
Fortunately for Kelsey, after a few tough years she realized solitude and abstinence weren’t for her. When she met Bryan in 2010, she decided to take a different approach.
“I entered this relationship very differently. I was up front from the very beginning about my disease. I couldn’t tell you why … maybe I was more mature or better educated about the disease, or maybe I was at the point where I just didn’t care what people thought anymore and wanted to be happy.”
She explained to Bryan what Crohn’s disease was, how it played out when she was sick, and what could happen while being intimate. She says it was hard to do this at the beginning of a relationship, but it immediately paid off in stress-free intimacy with an open line of communication.
Kelsey and Bryan are now married, and brought baby Skylar into the world in 2014.
Communication is key
Both Rachel and Kelsey benefited from the mixed blessing of having parents with Crohn’s and colitis. Rachel’s father has Crohn’s disease, and was a rock for her during the worst of times, when she would call him every day to share good news and bad, blow off steam and ask for advice. She also benefited from a very sympathetic gastroenterologist who gave her as much time as she needed to understand her disease from all perspectives.
Kelsey’s parents were remarkable supports and role models for her too, especially because they both understood exactly what she was experiencing. Her father Brian was diagnosed with ulcerative colitis when he was 23 years old, and her mother Debbie was diagnosed with Crohn’s disease when she was 50. The Langley, BC couple has learned to talk always, broaden their definition of intimacy, love unconditionally and laugh when it helps.
“We have learned to adapt in the bedroom,” says Kelsey’s mother, Deb. “If we need to get up and go, we just do that. Of course interruptions are not so great, but the important matter is we are close to each other and want to be intimate even with all the baggage this disease can bring.”
Deb says that has meant enjoying intimacy in other ways that are still meaningful, like watching a movie together, playing a game you both enjoy, and cuddling and kissing without expectations. It’s important to reinforce the intimate bond even when it won’t lead to the release usually expected from sex.
Deb says the most important skill she and Brian have learned is the ability to talk freely about the disease, sharing their concerns and symptoms so they can feel comfortable saying when sex is not an option. Brian says this is especially important for men with Crohn’s or colitis, as they can often have trouble sharing.
“For some men it is difficult to share how we are feeling, both physically and emotionally, with our partners. But the reality is it can bring you so much closer together.”
They also learned that reaching out and learning from others who are having the same experience helps break down the embarrassment and build coping skills.
“Educating yourself by reaching out to credible organizations can help,” says Brian. Deb adds that there are several valuable online resources, such as www.trustedtherapies.com
– a patient-powered online forum that aims to improve the lives of people living with chronic disease – as well as a number of blogs by patients who share their coping mechanisms.
Ostomy Canada’s website also has two ostomy lifestyle experts available online to answer questions about the many aspects of living with an ostomy. And in early 2015, Crohn’s and Colitis is piloting a peer-to-peer mentoring program to support patients and families in dealing with the psycho-social aspects of living with Crohn’s and colitis, and to provide emotional support from people who have lived the experience.
Kelsey and Rachel have similar experiences, and consequently similar advice to share with anyone struggling with disease and intimacy.
Communicate - Openness and honest communication must be the basis for a healthy sex life for anyone, but especially so for people with Crohn’s and colitis. This foundation helps the patient feel confident and safe describing what level of intimacy is possible at different stages, but also helps protect their partner from feeling rejected or taking the lack of intimacy personally. As Kelsey says, the more you talk about it, the easier it gets.
Educate - While it may not be realistic to communicate openly with your extended family and friends about how Crohn’s and colitis affect intimacy, it is important to educate your community about the disease. Both Kelsey and Rachel have heard the ‘but you don’t look sick’ comment enough to know there is limited understanding about how debilitating these diseases can be. Directing people to objective, reliable sources of information about the disease can help them better understand and support you.
Seek community - Rachel, Kelsey, Brian and Deb all are blessed with partners they can communicate easily with, but not everyone with Crohn’s or colitis will be as lucky. If your relationship is new, or open communication is a challenge, contact your local Crohn’s and Colitis Canada chapter or health facility to see if there are local support groups, or connect with some of the resources mentioned previously. Even if there are no resources locally connected to Crohn’s and colitis, a good personal support system is a must.
Manage stress - Living with the unpredictability, pain and stigma of Crohn’s and colitis is stressful enough! Where you can, keep additional stress at bay and take time to decompress from the stress you already face. Make the time to eat as well as you can, and to get exercise when you can to ward off the effects of stress.
Zoom out - For Kelsey, it’s about staying positive, surrounding herself with positive people and never giving up. For Rachel, it’s taking a deep breath and taking it one day at time. For Deb and Brian, it’s about being mindful of the whole relationship and not letting the disease define them. Looking at the bigger picture is a key tool for maintaining healthy relationships and managing your disease.
Five rules for preserving intimacy
1. Be honest and clear about what you’re feeling and what level of intimacy you can handle. This helps you accept your limitations, and helps your partner be more understanding.
2. Help others understand your experience by providing credible information and links. It will make open communication easier.
3. Don’t try to figure it out alone. One in 150 Canadians lives with Crohn’s or colitis, so benefit from the wisdom of others who’ve struggled with their disease and intimacy.
4. Take care of yourself and manage stress so you can better cope with your symptoms and be present in your relationships.
5. Try to keep your disease in perspective, as one element of you that does not completely define who you are and how you live.