Category: Dating, Love + Marriage

“So, You Have an Ostomy”: Recommendations for Dating, Intimacy, Naming Your Stoma, and Dressing—Part 3

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Dating with IBD can be daunting. Add an ostomy to the mix and that stress is amplified ten-fold. In Part 3 of “So, You Have An Ostomy” hear from several ostomates about navigating relationships, intimacy, discovering what clothing and undergarments work best, and why some choose to name their stoma and others don’t.

Before we get started, here are links to:

Part 1: Coping with the Complexity

Part 2: Tips for Travel, Diet, and Bag Changes

Dating and finding the one with an ostomy

Brian Greenburg, 37, of New York was diagnosed with Crohn’s at age 11. He has a permanent ostomy and “Ken Butt”. As a married man, he reflects on what it was like to be part of the dating scene.

“The best piece of advice I was given about dating is that my ostomy won’t keep me from meeting the “right one”, it will keep me from trying to be with the “wrong one”.

Read that again. It’s powerful and so, so true for anyone with a chronic illness. Brian advises it’s best to talk confidently about your ostomy and not to shy away from communicating with your partner.

London Harrah, 29, of California, was diagnosed with ulcerative colitis two years ago. From the get-go, his gastroenterologist told him there was a possibility he was going to need an ostomy. At first, London was completely against the idea. His disease didn’t give him any other choice and he ended up with an ileostomy.

“I was having 20 bowel movements a day and throwing up at least one time a day and I was losing a lot of blood. I mentally and physically got to the point where I could not take it anymore and after countless visits to the doctor and attempts at different medicines, I told them that I wanted to proceed with the surgery. I had basically given up on any and all expectations on what I wanted my life to be and had accepted that I just needed to feel better.”

London recalls making his first post about his ileostomy on social media and expecting that no women would be interested in him because of it. He was single when he had the surgery and had accepted he was going to be alone the rest of his life.

“Over time I gained more and more confidence and ended up testing the waters with talking to women. I soon was able to figure out that, if anything, having this surgery just assisted me in weeding out the bad apples. There are a lot of people out there who see beyond the surface of someone and will accept you for the person you are.”

London is currently in a new relationship and just got past the peak of explaining everything about his ileostomy in detail with his girlfriend. He says he feels a lot better knowing she accepts him completely.

Jordan Ditty says she was worried going into surgery not how it would impact her marriage, but moreso that her ostomy not only affects her life, but her husband’s as well.

“Going through surgery, seeing my stoma, sharing the frustrations and wins, naming my stoma together…it all brought us closer. If you ask my husband, he will tell you it did not impact him at all, he was happy that I was no longer in pain and we were able to live.”

As far as intimacy goes, Jordan says she was nervous, but that her ostomy did not affect a single thing.

“I personally always empty right before we do anything then just fold it up, so it is not flapping around between us. There are also many options out today for ostomies, crotchless lingerie that keeps your bag in place if you don’t want your partner seeing it, high waisted options, belts, etc. Find what makes you comfortable, just remember you are still you, beautiful as ever because you are finally healthy!”

Andrew Battifarano is a 26-year-old in New York, as far at the dating scene in the Big Apple, he says he’s usually open about his ostomy and finds it’s beneficial for both sides. Andrew says most people are super accepting and appreciate his honesty.

“There are those who are grossed out and don’t want to deal with someone who has an ostomy. It’s good to know who wants to be in your life and will accept you no matter what early in the process rather than later. I think everyone has their own methods, but I stand by being forthright early on so you can tell a potential partner what it is and hopefully educate them a little bit.”

Payge Duerre met her boyfriend after she had an ostomy. She says he saw her bag in a photo on her Tinder profile and stalked her ostomy Instagram before they met in person.

“He had actually said that my ostomy was a small part of what drew him to me, he could only imagine how I was living, and he wanted to take care of me like no one else did. It did not impact being intimate at all. We both think scars are more beautiful than untouched skin. And it has helped my intimacy. Not having that pain and sickness wearing me down all the time, or not worrying about using the bathroom in the middle of being sexy has helped me.”

Richard Harris, 39, of the United Kingdom was diagnosed with ulcerative colitis when he was 23. He says his girlfriend at the time of diagnosis and his first surgery is now his wife and the mother of their two boys.

“We’ve really been through it all together. She visited me in hospital when I was sick and had lost more than 3 stone (40-plus pounds!), so I think she saw it as a life or death thing too. Post-surgical recovery, intimacy took a while, but we got there in the end. The Coloplast Senusra Mio has a handy fold up feature with some Velcro to tuck the bag away which I tend to do.”

Tim Albert’s girlfriend has been by his side through it all, too.

“Initially I was concerned she wouldn’t want to deal with the struggles an ostomy brings, but she has proven time and time again that she has my back with this. For me, it wasn’t easy to be intimate, simply because I didn’t have the core strength. I physically couldn’t perform like my old self, and that was a tough pill to swallow. With time, I got stronger and that aspect of our relationship became fun again.”

Lindsay Dickerson says her ostomy did not impact her husband at all.

“He assured me multiple times that I am just as attractive, and it does not take away his sexual drive for me (just being blunt). However, as confident as I was with showing my bag off for others everywhere else, the bedroom was a different story. Finding lingerie that is “accessible” to your significant other but covers up the bag has helped me with confidence. Switching brands helped also – Hollister was super loud, and you always heard it during sexy time. The Coloplast Mio makes no noise.”

Byrd Vihlen says her husband is very information oriented and learned the ostomy terms before she did from reading an informational packet provided by the hospital.

“He helped me empty my bag, with no hesitation, for several days after surgery when I was unable do it. It was truly a sign of unconditional love. If your significant other cannot accept that you need an ostomy bag, their love is conditional.”

To name a stoma or not to name a stoma

Of all the ostomates I spoke with—it was a mixed bag (no pun intended!) when it came to those who choose or chose to name their stoma and those who do not. Each person’s reasoning and explanation made a lot of sense.  

Tina Aswani Omprakash said her husband named her stoma “Snuffleupagus” in the hospital after surgery since it resembled the snout of the Sesame Street character. She also calls him “Bebu” which is a loving term that means “baby” in Hindi.

Sahara Fleetwood-Beresford’s experience is unique in that she has gone back and forth through her journey.

“I did not name my first one. I named my second one because I read it could help with acceptance of it. It DID make it easier to talk about to people. I do still consider my current stoma to have the same name, but I don’t often refer to it by name anymore. I usually just say “my stoma” because I felt like referring to it by name almost made me think of it like a sperate entity, when it’s not. Porta didn’t shit in the shower – I shit in the shower! Porta is not farting – I am farting. You get the idea.”

Jordan Ditty and her husband named her stoma “Norman”.

“We call him Norman when he is being difficult and Norm when he is being good. I thought it was silly at first to name him, but after a few weeks of being home with it, we came up with a name. It normalized it, made it easy to throw into a conversation, my friends and family all refer to my stoma as Norman.”

For those who haven’t chosen to name their stoma, the consensus was that it’s “just a part of them and not separate.”

Clothing preferences

  • Ostomy Secrets Underwear for Men—supportive and comfortable
  • Ostomy Secrets Wraps for Women—helps keep everything secure
  • High waisted tights, leggings, skirts, dresses, and jeans
  • American Eagle jeans
  • KanCan pants—with their stretch to allow the bag to grow
  • Vanilla Blush Hernia Support Vest for strength exercises
  • LuLu Commission Pants (for Men)
  • Aerie leggings and underwear for security and flexibility with an ostomy
Gaylyn Henderson modeling for Aerie as a proud ostomate.

Natasha Weinstein recommends discussing ostomy accessories with your care team.

“Would you do better with an ostomy belt? Are you active? Do you like to run, hike, bike, swim? You can still do these things! I am a runner and started running because of the Crohn’s and Colitis Foundation’s Team Challenge program and continued running despite my Crohn’s. Having an ostomy has made it easier for me to run since I am less worried about when I’ll need a bathroom next. Like more extreme sports? On my 27th birthday Ziggy stoma (yes I named mine and I recommend you do too – it helps with acceptance and I have all my friends referring to him as Ziggy), well Ziggy and I jumped out of an airplane! IT WAS A BLAST! What I promise is you can truly do anything you set your mind to, and your new ostomy will be along for the ride.”

Stay tuned Wednesday (September 30) for the final piece in the Lights, Camera, Crohn’s “So, You Have An Ostomy” series. A look at the perspective gained, advice for caretakers and family members, and incredible stories of ostomate perseverance that are sure to inspire.

Navigating IBD and IVF During a Pandemic WITH A Toddler

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When I asked 34-year-old Amanda Osowski how she’s juggling Crohn’s disease, motherhood, and IVF during the pandemic, she said “with caution.” And rightfully so! These times are complicated and overwhelming for everyone. Add some chronic illnesses and trying to maintain your health, sanity, and emotions while doing all that and trying to get pregnant with a second child through IVF, and I’m amazed she found the time and energy to write this guest post! I’ll let her take it away.

Here we are, more than 7 months into a global pandemic, still wondering if and when life may “resume as normal”. To be honest, in my house, life has in some ways paused and in other ways accelerated since the March quarantines began. As an IBD patient on Remicade (an immunosuppressant medication to manage my Crohn’s disease), I have chosen from the beginning to adhere strictly to social distancing, mask wearing, unnecessary exposure and other risk reducing options. 

This also meant that my job, my income, and my ability to support others has transitioned from mainly in-person to entirely virtual. The silver lining of this is that I’m able to work with clients all over the world. Balancing that alongside parenthood, and IBD during a pandemic requires a good bit of patience, strategic thinking, and deliberate planning.  

Gearing up for Baby #2 Through IVF 

My husband and I were diagnosed with Unexplained Infertility in 2017 while trying to conceive our first child. After several failed treatments, we had one successful round of IVF in which I became pregnant with our daughter in the fall of 2018. As soon as she was born, we knew we wanted to have another baby close in age – both for our family planning goals and in hopes that I would be able to maintain my Crohn’s remission status long enough to complete another pregnancy. 

While we began trying naturally as soon as we were ready, we knew that the recommendation for fertility treatment was to wait until 12 months passed after delivering our daughter. I desperately hoped that we’d get lucky before then, and that we’d end up with natural conception, rather than going through the physical, emotional, and financial journey of another cycle of IVF. I also knew that I wanted another baby, and that would happen however it was meant to. 

How the pandemic has impacted fertility treatments

We were scheduled to begin fertility testing in March 2020, with treatment starting in April. As I’m sure you guessed, that was immediately halted with the closing of most fertility offices and the pausing of all new treatment cycles with the influx of COVID-19 cases and concerns. Having my treatment (and my timeline) be paused indefinitely with the continuing anxiety and stress of the pandemic caused my IBD symptoms to increase – something that then caused me more anxiety and stress about its impact on my IVF plan if and when I was able to reschedule treatment. 

After an exceptionally long few months, my doctor’s office re-connected with me about getting my appointments scheduled. My IBD while not flaring, was not perfectly calm either, and that’s such an important part to me about preparing for pregnancy, so we gave it a little more time. FINALLY, this month (September), I began the treatment protocol I should’ve started five months earlier. Our daughter Brooklyn just turned 16 months old.

Today you’ll find me managing IVF medication injections around business calls, my Remicade infusion schedule, chasing a toddler and being stuck inside my home around the clock. It’s HARD, and exhausting, but it’s the only way I know how to make my hopes come true. 

Tips for handling IBD + IVF

  1. Communication with your partner is critical. From parenting responsibilities to COVID-19 precautions to childcare to work stressors to fertility treatment planning and execution – there is an entire machine full of decisions and emotions that are part of every single day, and not being on the same page as your partner can have devastating effects. My recommendation: schedule time once a week on your calendar after bedtime to talk. Keep a list running during the week of things to add to the conversation. Ask all your questions to each other then, when you can focus and talk and connect. You’re a team, and it’s important in this season to work together. 
  1. Mental health is just as important as physical health. When managing IBD + ANYTHING, let alone motherhood, and a pandemic, and fertility treatment, taking time to check in with your mental health and care for yourself is imperative. Each of these things come with so many feelings, and burying them all will only make it harder to deal (& keep your IBD in check!) I personally recommend working with a counselor, taking time to journal or meditate or center yourself, and ensure you’re checking in with your own needs regularly. 
  1. Social Media Strategy – During the pandemic, I think we’ve all admitted to more screen time than usual. I know firsthand that the amount of pregnancy announcements, gender reveals, new baby births & seeing families with multiple kiddos can cause feelings of guilt, frustration, jealousy, anger, etc. Social media can make things feel extra difficult for those struggling to get pregnant, undergoing fertility treatments AND managing something like IBD. Here’s what I recommend. The beauty of social media is that we can choose what we do and don’t see while we scroll. This is a perfect time to click “hide” or “unfollow” on any hashtags or accounts that make you feel sad or icky. That’s not to say you don’t love your neighbor/friend/co-worker, but in my opinion you also don’t have to constantly watch their highlight reel. On the flipside, utilize social media to connect with your TRIBE. Whether that’s other IBD and IVF warriors, others struggling with infertility, etc – there’s so much more space for online communities now than there ever has been before. If you’re having difficulty finding and connecting with others, please DM me and I’m happy to make some suggestions! Also, please know that whatever you’re feeling during this experience and this season is so valid, and you’re not alone!  
  1. Give yourself grace. There will be days when you feel inadequate – as a parent, as a spouse, as a patient – these moments don’t define you. You’re juggling so much, it’s so important to know that you’re doing the best you can, even if that looks different than it used to or different than you’d like it to. 

If my story resonated with you, or you’d like to connect, please reach out! You can find me on Instagram personally as @amanda.osowski and professionally as @heartfeltbeginnings.  

You are not a burden if you have IBD

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When I was 21, in the matter of one week I received an IBD diagnosis and had my heart broken. My boyfriend from college who had previously treated me like a queen, never visited me in the hospital and broke up with me the day I returned home.

I’ll always remember walking into my parent’s bedroom and telling my mom about the break-up. My body frail. My arms battered with bright purple bruises up and down. The weight of a lifelong disease and 22 pills a day hitting me head-on with every emotion possible. My mom’s response, “Well, you’re not perfect in his eyes anymore.”

From that point forward, I worried about the invisible Scarlet Letter of my illness and how it would impact my love life.

Would a man ever be able to love me, for all of me? Crohn’s and all?

You are not a burden.

The recent advice column shared in the New York Times entitled, “Is it Ok to Dump Him Because of His Medical Condition,” plays into every fear and every worry IBD patients grapple with. While Crohn’s and ulcerative colitis can happen at any age, people are more frequently diagnosed between the ages of 15 and 35. Finding out you have a chronic disease with no cure in those youthful years of life—often prior to finding a life partner or starting a career path, is incredibly overwhelming. The fear of the future and what is to come with your hopes and dreams is nearly debilitating at times.

So, it’s pretty freaking ironic when the author of “The Ethicist” who considers “readers’ ethical quandaries” responds back to this question about breaking up with someone because they have Crohn’s by saying:

“Committing to this person may be committing to a life as a caregiver”… and… “You don’t owe it to anyone to accept that burden.”

You are not a burden.

not a burden2Referring to people with any chronic illness or disabilities in this way is not only hurtful, but extremely ableist. You can’t assume everyone with IBD is going to need a caregiver in a partner. If the author had any idea about how Crohn’s manifests, he would know that the disease is a rollercoaster…oftentimes years of being able to manage, followed by hardships, setbacks, and flares and back again.

As a 36-year-old married woman and mom of two, I have referred to my husband as a caregiver, but he’s more so my source of support and someone who sees me for much more than my disease. He would never think of me as a burden. He would never have considered breaking up with me because life could get complicated with my disease. He sees my disease as a part of who I am, but recognizes I am so much more. not a burden 3

You are not a burden.

To the 25-year-old single girl with ulcerative colitis reading this. To the parent of the child with IBD worried about whether their little one will ever find love as an adult. To the guy being talked about in the NYT article who most likely was broken up with—believe this:

You will meet people who turn a cheek once they find out you have IBD or suddenly show disinterest. It sucks in the moment. It feels like you’re getting punched in the gut. But use that pain to recognize that type of person isn’t meant to be your person. Take that heartbreak and use it to your advantage. Set you bar high. Settle for no one. Use your disease to shed light on people’s true colors. Who is going to be there when the going gets tough? Who lifts you up when you’re too weak to stand on your own? Who sees strength in your vulnerability with your health and the way you take on life? your are not a burden5

You are not a burden.

I’ve had Crohn’s for 15 years (next month!). Last night I needed to take a pain pill to quiet the gnawing pain in my abdomen. This morning I had to make a fast dash to the bathroom multiple times in front of my husband and in-laws while my kids needed tending to. I apologized for needing to go to the bathroom so many times. Even as a veteran patient who’s four years into marriage with a man who loves me unconditionally, the words of that damn article rang out in my mind. I felt the guilt and wonder creep in….am I a burden?!

No matter how long you have IBD, no matter how well you have it managed, there are still moments where you feel less than your peers. There are still moments you can’t keep up. There are still moments if you wonder whether you are enough.

Just remind yourself…and I promise to do the same…YOU ARE NOT A BURDEN. And shame on you New York Times…as a journalist, I expect more. And so do your readers.