As someone who has spoken on the “ostomy patient perspective” for the last few years, I have found the most common questions asked during Q&A revolve around dating, relationships, and sex. So, with it being Valentine’s Day, I found it most appropriate to share my experience of dating, relationships, and sex with an ostomy.

Dating & Relationships

I never thought I could date or have a serious relationship with an ostomy until I did. The dating scene can be stressful and often causes the fear of rejection (and that’s without an ostomy) so entering the scene after having surgery can feel a bit intimidating. However, dating can also be a fun and exciting experience, and having an ostomy should not scare you away from enjoying someone else’s company. I’ve had my fair share of dating since having my surgery over 10 years ago, and to be honest I didn’t date much prior to my ostomy (mind you, I was 15 years old at the time of my first operation and I’m not sure what you would even classify as “dating” at that time). None the less, the majority of my dating experience has been with my ostomy.

“I never thought I could date or have a serious relationship with an ostomy until I did.”

When and How Do I Tell Someone?

With this topic being amongst the most popular questions, I am often asked, “When do you tell someone you’re dating that you have an ostomy?” The answer is, whenever YOU want! It is your body, this is your journey, and this is your potential relationship. Personally, I preferred to feel it out, see if the relationship had potential, and made my judgement from there. I rarely ever told anyone before the 3rd date, because in my opinion, having an ostomy isn’t really one of those – “Hey, what’s your sign?” kind of ice breakers. I usually kept things under-wraps until I knew I was really interested. Now that I am more open with my disease and my ostomy in the efforts to raise awareness, who knows, maybe it would be a first date topic?! Plus, these days with social media, things like Instagram and Facebook pictures tend to blow my cover (Que bikini photo on the beach, ostomy out – loud and proud!).

The (gut) Reaction

I’m not sure if I’ve just been lucky, but I never experienced a negative reaction when telling someone I’ve dated about my ostomy. I’ve experienced a variety of reactions; more in the sense of empathy, understanding, and downright fascination (literally asked if he could touch my stoma), but they all have been positive and very supportive. In all honesty, if I ever did come across someone who had a poor reaction, I would have been grateful. My grandmother joked that my ostomy ruled out the losers, and I would have to agree. I would have never wanted to be with someone who couldn’t accept my ostomy, it is a part of me.

“I would have never wanted to be with someone who couldn’t accept my ostomy, it is a part of me.”

I do believe that presentation is key. The reaction you receive from others often reflects the attitude you have towards your ostomy and how you share that information. So be positive and proud of your body- it is beautiful.

“The reaction you receive from others often reflects the attitude you have towards your ostomy and how you share that information.”

Sex

Surgery has its own timeline as to when you are physically able to get back to sex; but whether you are emotionally ready for sex after ostomy surgery may be within a different time-frame. Be patient with yourself. An ostomy pouch isn’t necessarily the latest and greatest bedroom accessory to make you feel sexy, or boost your libido, and sex can be intimidating with an ostomy. However, whether it is with your spouse or a one-night stand; it is important for you to feel comfortable.

Sex as a single/dating person is obviously different than sex as a married couple- ostomy or not; and where you are in your relationship may factor how much you’d like to share with someone. But again, whether or not you choose to share that you have an ostomy is entirely up to you. You might be asking yourself, “How can I keep my ostomy a secret once it comes time to enter the bedroom?” Take it from me- it can be done! If and when you do decide to tell your sexual partner about your ostomy, be sure to let them know how you are feeling, what positions you are comfortable with, and inform them that they aren’t going to hurt you (same advice applies to your spouse as well). Fortunately, if you’re still not comfortable baring it all, there are lots of accessories including belts, wraps, specialty underwear, and even lingerie; all designed to conceal your ostomy pouch- allowing you to focus less on your ostomy and more on what’s really going on. Finding love is a different journey for us all, and although having an ostomy may be an added twist in the road, it is definitely not a road block to a loving relationship and a fulfilling sex life.

“Finding love is a different journey for us all, and although having an ostomy may be an added twist in the road, it is definitely not a road block to a loving relationship and a fulfilling sex life.”

 

 

 

Anyone who has undergone ostomy surgery knows just how life altering it is. After having ileostomy surgery there were many things I had to adjust to, especially within the first 2 years after having my surgery. Learning the new process of my newly fashioned anatomy, I began to alter certain habits of my life to accommodate how my body functioned. I had to ask myself questions like, “How long after I eat this will I need to use the restroom?”, and over time I learned what types of foods and drinks caused my pouch to fill up more quickly. Forming new eating habits took some time, but I think what took the longest was learning how to avoid dehydration.

Forming new eating habits took some time, but I think what took the longest was learning how to avoid dehydration.

You might be thinking – “Just drink more water…it can’t be that hard?”. And you are right, drinking more wasn’t the hard part. Actually, drinking large quantities in short spans of time caused some of my biggest issues with dehydration. Allow me to clarify so there isn’t any confusion. I would drink, and drink, and drink, large amounts of fluids in a very short amount of time and my ostomy output would be out of control. I went to the Emergency Department numerous times because I could not seem to slow down my ostomy output. It took me years before I could appropriately manage my hydration, but I learned what contributed to high output levels.

It took me years before I could appropriately manage my hydration.

This is a picture of me in a Med-Tent at the Stagecoach Country Music Festival. I had become severely dehydrated during the festival weekend and needed IV fluids.
This is a picture of me in a Med-Tent at the Stagecoach Country Music Festival. I had become severely dehydrated during the festival weekend and needed IV fluids.

Some of the contributors to my increased output included sports drinks, fruit juices, soda, and even alcohol. Now this doesn’t mean I had to completely cut these items out of my diet, but there are little tricks I picked up over time. Diluting juices with water, switching to diet or sugar free drinks, and ultimately to SLOW DOWN and not guzzle my drinks down, these all help to manage my output and allow me to maintain my hydration. Hydration is important for everyone, but especially for ileostomy patients; so tune into your body’s habits, learn what effects your output, and utilize any resources available to help keep you hydrated and aware of your output.

…tune into your body’s habits, learn what effect your output, and utilize any resources available to help keep you hydrated and aware of your output.

Sharing about my struggle through multiple misdiagnosis.

It has become a true passion of mine to share my story. Not just to anyone that is willing to listen, but specifically to those that have an opportunity to make a difference in the lives of other patients. Whether it be clinicians, surgeons, nurses, medical students, physicians, or even other patients- my goal in sharing my journey is to help others.

It has become a true passion of mine to share my story.

Sharing about my struggle through multiple misdiagnosis.
Expressing the struggles I faced through multiple misdiagnosis.

Today, this special group of life changers were the nurses of Scripps Health. Nurses from multiple Scripps Hospital locations join together quarterly, to learn about how to better care for patients with various wounds and/or an ostomy. This course is put on by Scripps’ amazing team of Wound Ostomy and Continence Nurses (WOCN’s), and it is such a privilege to present alongside such a dedicated team. After the class reviews the “basics” of ostomy care: what is an ostomy, the different types of ostomies (ileostomy, urostomy, colostomy, etc.), ostomy pouches and pouching techniques, the do’s and don’ts, possible parastomal skin complications, and how to change/empty an ostomy pouch; the class is then introduced to me.

During my presentation I share significant moments in my life; from the start of my symptoms, my struggle through misdiagnoses, my final diagnosis of Crohn’s Disease, my 8-month hospital stay, and of course my ostomy surgery. I really emphasize what life is like with a stoma, the positive aspects of my life because of my ostomy surgery, how nurses can better support their ostomy patients, resources and tools to provide to their patients, as well as answering any questions they may have. I am always very honest and extremely open, even with the most intimate details of my life- because the reality is, having ostomy surgery is a very intimate thing. Because of this, not everyone likes to share; which is another reason why I do- so that hopefully, one day, less and less people living with an ostomy are silenced by the stigma.

-because the reality is, having ostomy surgery is a very intimate thing.

Sharing about my passion to raise awareness for other ostomy patients, like myself.
Sharing about my passion of raising awareness for ostomy patients.

After every one of these courses in which I have shared my story, I am encouraged not only by the WOCN’s who arrange the class, but also by the nurses attending. “It is a breath of fresh air to hear from a patient”, one nurse told me. Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well. It is an incredible opportunity to influence and encourage these nurses, and to remind them to approach ostomy patients with a little more compassion and patience. But most of all, it is motivating to continue to raise awareness on behalf of ostomy patients, to promote life for the better because of ostomy surgery, and continue my passion of sharing my story in the effort to change lives.

Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well.