Part 1: My Love Life as an Ostomate

On World Ostomy Day, I posted a question on The Crohns and Ulcerative Colitis Diaries: Living with IBD facebook support page

What is one question you’d like to ask someone who has an ostomy? Or if you have it yourself, is there something you’d like to ask your fellow ostomates?

Most of the questions I got were about how having an ostomy affects intimacy, relationships, and sexuality. I answered the other questions on the page that day but thought this particular topic deserved some more attention.

I just want to start by saying that what I am going to talk about here are my own personal experiences and mine only. I also want to acknowledge the fact that I truly despise reading cliché posts from people so if I say something that makes you think “yeah, yeah, heard it and I’ll believe it when I see it” – try to look at my words a little differently if you can.

Background about My Love Life as an Ostomate- Part 1

Someone used the word “sexuality” during the discussion and made it clear that it was different in her mind than intimacy and being okay in relationships. For clarification purposes, I am using this term to mean being confident in sexually intimate situations.

Having an ostomy changes the way you look and feel about your body. How could it not? You aren’t supposed to have an external appliance taped on your stomach that covers a piece of your intestine. That isn’t the norm. It isn’t what society says is acceptable and it isn’t what anyone wants.

When I had my ostomy for three years as a teenager, I couldn’t have been less comfortable in this department. I told my boyfriend of a few months when I was 16 over AIM (AOL instant messenger) very briefly that I had a bag since I was trying to be honest, but the reality was I couldn’t handle an intimate relationship. I wasn’t comfortable with who I was and therefore, I wasn’t OKAY being intimate with him, or anyone for that matter at that time. The relationship ran its course and while I do believe he tried to understand as much as he could, given the fact that we were both in high school, neither one of us were really able to deal with the emotional issues this took on both of us. I could barely wrap my head around what was happening with my body, so I couldn’t even explain it to him fully.

I dated a few guys after him when I had my ostomy and I don’t know if I just don’t pick smart guys or maybe my parents were right all along but I got away with “it’s a bandage” for such a long time. I automatically assumed that if someone touched my stomach and felt something, they would jump to the conclusion that it was an ostomy and be grossed out. That couldn’t be farther from the truth. No one, I mean not one person – including the guy I lost my virginity to (I had a shirt on) knew I had a bag.

I had a kock pouch from the ages of 19-24 which is another post/story entirely so I’ll fast forward a bit until I got my second ostomy at the age of 24.

I had my surgery at the very end of July 2011, and I started dating someone in October of that year. When it came time to tell him about my situation, I was petrified beyond belief. I wanted more than anything to be able to have an open and honest relationship with this guy and I wanted him to accept me for who I was. I had spent the previous years hiding everything about myself, my body…literally everything and I couldn’t do that anymore.

I remember texting him the night before we were supposed to get together and told him I had something important to talk to him about but wanted to do it in person. When I went over to his house the following day, I remember sitting in his driveway a little bit rehearsing what I was going to say to him with my dad on the phone. And then I just told him the truth.

I will never forget where we were and the look on his face. It was this blank stare and just said in a semi loud tone “That’s it? That’s all you had to tell me?”

When I told him that was all I had for him, he gave me a huge hug and said he was pretty much up all night thinking I killed someone, had been in prison, and named a bunch of other heinous things he thought I was going to tell him. He took a few sighs of relief, asked me a couple questions, and then we pretty much never talked about it again aside from some food related things. The day carried on like it always was and it truly never mattered.

For those of you who know me personally, you may already know that I am currently dating a wonderful man who also could care less that I have an ostomy. He has helped me to see that it is such a small part of me and while I may be sensitive about it, I am honestly starting not to care that much. It is definitely present but I really from the bottom of my heart want to thank Frank for ingraining in my head that I am so much more than ulcerative colitis and an ostomy.

To go back to my original statement earlier in this post about not wanting to sound cliché, when (not “IF”) you find the right person, or even a “right now” person, an ostomy will not make or break a relationship. It seriously won’t. And this is coming from someone who fought for two years to allow her parents/doctors to go through with a surgery wrought with complications in an effort to rid herself of the bag. It is also coming from someone who continuously was so hell bent on not living life as an ostomate that she continued to endure more surgeries so she would be able to live without an external appliance.

I hate speaking in the third person but I really want to ingrain in anyone who reads this posts mind that I am not someone spewing out things just to say them. I have been where most of you are. I have read posts like this and thought that it was great for whoever was writing it but the question “who is going to accept me?” was in my head constantly. So while relationships don’t work out more often than they succeed, people do walk away, and things do change, it is perfectly understandable why your mind would think your IBD/ostomy was the reason for it. Please remember that 99percent of the time, it isn’t.

Part 2, I am going to be talking about How Having an Ostomy Impacts Relationships

Part 3, I will go into detail about Intimacy with an Ostomy

  • Jodi

    GREAT, great post Marisa. so true in so many areas of life. I had the same experiences with my own illness. The ones who really love YOU will be okay. Thank you, Frank for being there and knowing that Marisa is WAY more than an ostomate. Maris- I know that by you sharing this very personal experience, many more have been helped and maybe even feel a little less scared in their own circumstances.

    • Marisa Lauren

      I know you’ve experienced a lot in your own life and it is so true, the people who care about YOU won’t care about the other things. <3

  • Rosanne

    You rock. Seriously.

    I can’t imagine how hard this must’ve been for you, but I could not be any happier for you now. It’s hard to try to act sexy and confident when you need to talk about something as “unsexy” as UC. I don’t have an ostomy, but I had a really hard time traveling via car with my boyfriend (now husband) for the first few years of our relationship. I was so afraid of having an accident in front of him and having that change the way he looked at me or felt about me. After having a very scary and frank conversation, like your man, he COULD NOT CARE LESS.

    In my opinion, honesty is the best policy.

    Thanks for being BRAVE and amazing, as always.

    • Marisa Lauren

      Thanks Rosanne for being such a great example of how someone can be in a happy, loving relationship. It helped me cling to relationships like yours, stories like you’ve told me.. makes you realize that through all the horrible-ness (that a word? lol) we go through, there are supportive people out there. Thanks for always being there for me my friend<3

  • A Guy With Crohn’s

    I always say we are more than IBD. We are people. I am so happy to hear you are now coming to that point where you can see beyond the disease.

    I am proud of you for the way you are able to open up so honestly and share this part of your life. It is what helps make you such a great person.

    • Marisa Lauren

      Thank you Jeffrey for your neverending support and kind words. We are so much more than IBD, just takes some time to realize that :) Helps to be surrounded by wonderful people like yourself!

  • val0525


    This is so well written. I know that you have had a rough time in the past. I am so happy for you that you are in a relationship with someone who does not care at all that you have an ostomy and that you are comfortable with him. You deserve all great things going forward.

    Great post for all of us, even if one does not have an ostomy.

    Proud of you.

    • Marisa Lauren

      Thank you Val!

  • noteunningfast

    My husband is an ostomate, and I remember clearly our first few dates. He told me about his Crohns and his surgery, and while I didn’t understand, I asked a lot of frank questions. I know he was sooooo nervous the first time we were intimate, but honestly I was more interested in the rest of him! LOL The first time it leaked, he was quite upset (humiliated, I guess) but I assured him it would take alot more than a little poop to scare me off. It was a monumental day in our relationship when he felt comfortable enough to show me his Stoma. I was intrigued, interested and HONOURED that he would share this with me. An ostomy gave him the quality of life that allowed him to be able to share in my life. For that I am grateful, because he is an amazing man and we have many adventures planned.

    In order to understand some of the feelings about the bag, I filled one with oatmeal and wore it for a few days – to the pool, to work, sleeping. It’s as close as I can come to understanding, and I would recommend the experience for the loved ones of any ostomates.

    • Marisa Lauren

      This was heartwarming to read! You sound like a wonderful person. When I first showed my current boyfriend my stoma, he told me the same thing you just said – that he felt “honored” I showed it to him. It is sooo amazing you walked around with a bag filled with outmeal to try and understand what your husband was going through. Thank you for your sweet comment and for showing me also that other people do try the very best they can to understand and while we may be understandably sensitive about it, when our partners really care about us, it doesn’t matter. I hope your husband is feeling well and wish you both so much happiness<3

  • David Rudzin

    Marisa, you are the EXACT type of person that we in the United Ostomy Associations of America are looking for. Someone who is comfortable, confident and articulate. I could not agree more with all you have said. One phrase I always use in my 40 years as an ostomate is that “the pouch is what I have, it is NOT who I am”. Your perspective is amazing. Please contact me at We would love to have you and your perspective working for us in UOAA in helping others.

  • Pingback: Part 2: How Having an Ostomy Affects Relationships | Keeping Things Inside is Bad for My Health()

  • Erin Smith (@gfreefun)

    What an awesomely honest post. Marisa, thank you for sharing your story!

  • David Rudzin

    After reading all these responses, all I can say is that you Marisa are quite a person, with so much to offer.Thank you for telling the story of so many of us in the way you did. It hit home and resonated for many of us.

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  • scarlettcrimson

    Hi my husband has had UC for 5 years now and is currently hospitalised due to his condition going from maybe 4″ to the whole colon in literally 2.5 months. I’m a nurse, am doing my best to keep him positive but he’s getting pretty damned depressed. They thought maybe he had caught a virus but now they say its not the case, started newer and harsher medications but nothing seems to work. Thank you for the blog. Any advice?

    • Marisa Lauren

      I am so sorry your husband is not doing well. I wish I had advice but because IBD is so different for everyone it is kind of difficult to say. If you want to email me we can talk more. Would be interested to hear what meds he has tried, what his doctor thinks, and we can talk through some of it if you like. thinking of you both. xoxo