I can still recall feeling like a new man almost immediately upon waking up with my ileostomy. I was 19, and suddenly free from years of pain and misery that had plagued me since I was 14. For the three years after receiving my ileostomy, I was in and out of several hospitals for 11 major surgeries, including total removal of the large intestine and rectum, while also struggling to withdraw from addictive prescriptive medications.
During those hospital stays, I was sometimes asked to informally counsel other male patients facing or recovering from ostomy surgery – middle-aged men, for the most part, whose primary concerns were often related to sex.
When at last I was turned loose into the world with my new bag and newfound health, I was enraptured with my new lease on life and an entire world to be explored including (of course) sex. Eventually I became an aid worker in Thailand, just as the HIV/AIDS epidemic was escalating – with unprotected sexual contact being the primary means of transmission.
I went on to complete my doctoral research on adolescent sexual behavior with a focus on unintended pregnancy, abandoned children and HIV/AIDS in Thailand. Since then, I have served in technical advisory positions on reproductive and related health issues with governments, local and international aid agencies and other institutions in over 20 countries throughout the Asia-Pacific region. I have also traveled to over 60 countries in Asia, Africa, Europe, North and South America, and the South Pacific. In that time I’ve learned the advantages of linking effective bag-related communication strategies with other effective measures to reduce the risk of sexually transmitted diseases and related health problems – particularly in higher risk situations involving casual and multiple-partner sex.
As it turns out, I have experienced relatively few bag-related problems in my intimate encounters over the years. While the few awkward moments have been pretty minor, they have also served as important and positive opportunities for personal growth, during brief encounters as well as in longer-term, more deeply intimate relationships.
Even in the early years after receiving my first ileostomy, and returning to college life, I didn’t experience any big problems adjusting. But maintaining a certain lightness and sense of humor helped. For example, I was awarded the “Man from Glad” award at my dormitory at the end of my sophmore year – a spoof on a long-running advertisement at the time for a popular brand of plastic trash bags.
The following recommendations gleaned from my personal experience are for anyone (men and women) to keep in mind regarding the common concerns around sex and related issues, whether in a long-term relationship, a newly developing one, or during casual encounters.
1. Intimacy with your regular partner (existing or pre-surgery intimate partner)
Open communication with clear, reassuring explanations of your emotional and physical situation and concerns is always best. In a genuine loving and caring relationship, your partner will likely express even greater concern and support for your well-being than you give to yourself. If, on the other hand, your partner decides he/she can no longer accept physical intimacy with you following your surgery, then you might be better off without that person. Or, at least, you will need to come up with alternative ways to meet each other’s physical and emotional needs – and this, too, can be an opportunity for growth.
Physical activities/limitations: Take precautions to avoid physical strain or damage to weakened abdominal muscles, such as after repair of peri-stomal hernia, or to incisions that are healing, etc. Communicate this important concern to your partner, and start off with “simple” sexual activities that are less physically demanding, and then try out activities and positions that do not strain the affected areas. For example, take the lower position, on your back, and let your partner move into in the upper position.
Pouch leaking (under wafer), pulling off, or tail-end clip coming undone during sex: Before getting started, empty the pouch, fold it over on itself and paper tape it to your body so it is out of the way, and less likely to get pulled off during sex.
2. Intimacy with a new partner or with “casual” partners
Clear, open communication is key – not only about the reasons for your surgery, the function of the pouch, and how much your ostomy surgery (or) receiving your ostomy has contributed to your return to normal, robust health, but also how to protect you and your partner from sexually transmitted diseases, and to avoid unintended pregnancy. Initiating effective communication and taking appropriate measures to address all of these issues is of the utmost importance, including using a condom everytime during intercourse.
Loud, unexpected and embarrassing bag noises: This can happen anywhere and is particularly embarrassing in large, quiet public gatherings, such as in meetings. So it is probably of less concern when in private with your lover – or at least more amusing.
Discomfort, disappointment, uncertainties, turning-off, or even outright rejection: A new partner may not be sufficiently aware of or fully understand your physical arrangements and appliances, and may therefore harbor (unfounded) concerns regarding sexual function, fear of IBD contagion, etc.
To avoid unnecessarily upsetting a new partner, open communication is once again the best approach, including clear, complete explanations early on. Perhaps consider an easy-to-understand “preview,” such as showing your partner your pouch before initiating sex. A bit of light humor early on can also help to defuse any potential shock.
Sexuality is natural – and can also sometimes be daunting. But remember learning to swim? If you are comfortable in the water, there’s little fear. It’s the same with intimacy: if you can relax, and be comfortable and accepting of your own body, your partner will also be comfortable and accepting of your body – and of you.
Over the past 35 years, Jim Mielke, who has a doctorate in Public Health, has lived and worked in 23 developing countries throughout the Asia-Pacific region assisting governments, international aid agencies and communities to strengthen local and national health systems. Since receiving his ileostomy when he was 19, life after recovery felt as thrilling as being shot from a cannon. Following years of depression, pain and suffering with inflammatory bowel disease, Jim is still flying high with renewed health and freedom while living in a quiet seaside setting in southern Thailand. You can read more about Jim’s overseas experiences here or connect with Jim on his Facebook page.