Finding love with an ostomy

Every so often I will hear a conversation about romantic relationships while living with an ostomy. Often someone will say they were left because of their ostomy, or that they’ve resigned themselves to being alone because no one could love them now. And I have one thing to say to them: STOP IT. An ostomy does not make you unlovable. It doesn’t make you anything other than another human with your own set of experiences. That ostomy is simply a symbol of the life you have lived and who you have become through those experiences.

Now full disclosure before I get too far into this: I was married when I went through surgery to get my ostomy, so I have not gone through the dating process with one; however, I believe what I am writing is true no matter what point you are at in a relationship.

Sometimes, it’s not the ostomy.

StephJarrod_hands copyWhen you go through something that necessitates getting an ostomy—whether it’s a chronic condition like IBD or some sort of trauma—that’s a lot for a person to handle. It may bring up feelings of “why me?” or resentment towards God or the world. Constant pain can make anyone feel frustrated. Having difficulty after surgery can lead to depression, feeling sorry for yourself, and lashing out at others. All of these can cause issues in a relationship. If you were someone whose partner left after your surgery, I am not at all saying that you are at fault. What I am saying is that going through this can change people, and when people change, the relationship changes and sometimes that relationship no longer works. So, if you were someone who was left and you felt they left because you now have an ostomy, there may be a lot more at play than simply that.

If you were truly left or rejected by someone because you have an ostomy, then they did you a favor.

If the simple fact that you have an ostomy freaked somebody out to the point they left, then they were not the right person. And in my opinion, it’s much better to know that now then to find it out years later. If someone goes running because of an ostomy bag, then you know what? All of those wedding vows… “for better or for worse, in sickness and in health” mean jack shit to this person. Would you really want to be with someone who can’t honestly say those vows and mean them? To me, it just shows they are a shallow person whose intimacy is only skin deep and that’s not the kind of person I would want to spend the rest of my life with.

I don’t think I’m lucky that I found someone “special.”

My husband is an incredible man. He’s been through a lot with me, driving me back and forth to the hospital dozens of times, spending hours sitting in surgical waiting rooms. I feel very grateful that I found someone who loves me the way that he does. But I don’t think my husband is some special breed of person who is willing to go through all of this. Of course I am very grateful for my husband and all that he has done for me. I consider myself very blessed to have found him and I do consider him to be someone special, but it’s not because he stayed with me after all of the sickness and surgeries. I consider him the same kind of special that every person who finds the right partner considers them. I think he is a good man and an honest man who takes his vows seriously. When he said, “in sickness and in health,” he meant it. That’s what love and commitment is all about.

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I know dating is not easy, especially when you throw an ostomy into the mix. I know I would be unsure of myself in the situation of having to tell a potential partner about this part of me that’s different. I won’t pretend that I know what it feels like to be rejected by a romantic partner because of my ostomy; I know that would hurt so much and would make the idea of putting yourself out there again much more difficult. But in the end, you have to realize that no matter what happens, it’s for the best. If the person runs, then good; at least you know what kind of person they are and you can go ahead and move on to find the right person, rather than wasting your time on them.

Finally, I don’t believe in being loved “in spite of” your ostomy; it’s a part of who you are and any partner should understand that and accept it for that. But I think the first step is learning how to accept the ostomy ourselves. Because if you can’t be accepting of your own ostomy, how can you expect someone else to? We have to understand and appreciate that living with an ostomy, whether temporary or permanent, has forever altered our life. Those changes will stick with us, no matter what comes our way… from this day forward… for better or for worse.

A new meaning for World IBD Day

I realize that today is World IBD day, but that is no longer the significance that this day holds for me. It was one year ago today that I was first admitted to the hospital with an intestinal blockage during the third trimester of my pregnancy. It was the beginning of the end of my pregnancy.

world ibd day inflammatory bowel disease crohn's ulcerative colitis ileostomy stephanie hughes anniversary pregnancyTwo days before, I had sent out a tweet about feeling a little blocked up. Honestly, at the time I didn’t think it was that big of a deal. It felt like the number of other times I had a mild blockage that would clear on its own if I drank a lot of water and stayed away from fibrous foods. Even when I went to the ER last May, I really only went because I was pregnant. If I hadn’t been worried about my son, I seriously doubt I would have gone to the hospital. It was more about being extra cautious than actually thinking there was a problem. After about a day in the hospital, I already was feeling better. I remember my surgeon coming in to talk to me and telling him I felt great and didn’t see a reason I needed to stay any longer.

this is ibd postLittle did I know how much worse it would get over the coming days and weeks. Two days after being released from the hospital, I was in tears over the amount of pain I was in and would end up taking myself back to the hospital in the morning. And three weeks after that, my son would be here.

For me now, this day is a reminder of how much IBD can impact your life and the lives of the people around you. My pregnancy and my son’s birth did not go as I had planned. Thankfully, everything turned out well in the end, with a healthy baby and a healthy mom, but it could have gone another direction. I know if we decide to have more kids, I will go about things differently in the hopes of preventing another blockage. But truth is… with a disease like IBD, you never know what’s going to happen. And that’s why awareness is so important. So people have the information they need in order to make the best decisions. So others understand, even just a little bit, what it’s like to live with an unpredictable disease. And so one day a cure can save others from spending World IBD Day in the emergency room.

Why I freak out when I see one of these

Mouth ulcers. Or canker sores, whichever you call them. 

One way I could always tell when my inflammatory bowel disease was active was when I started getting mouth ulcers. I remember when I was younger and going through a rough patch of symptoms and I would have 20 or more ulcers in my mouth. It made it difficult to eat or even to swallow.

inflammatory bowel disease mouth ulcers stolen colon crohn's ulcerative colitis ostomyEven now, when my IBD is not causing symptoms, whenever one or more these pops up, I get concerned. This one in the picture is actually from biting my lip, but it’s taking a very long time to heal and that also worries me. I also have another on my tongue, that I can’t get a picture of, that has come and gone a time or two over the past couple of months. Also, about two weeks ago I had one of the roof of my mouth.

I know it doesn’t sound like much, but it’s enough to make me think twice about how I’ve been feeling and to get me to pay a little more attention to my health. That’s the thing about living with chronic illness: You’re never out of the woods. It’s never gone, you’re never cured. Sometimes it feels like you’re just waiting around for it to pop back up again.

I am very thankful to have had these years since my surgery without dealing with any major symptoms of inflammatory bowel disease, but there is always this little part of me, in the back of my mind, that worries about those symptoms coming back. It was a big concern during my pregnancy, since your body goes through so much change during that time, it can kick up a reoccurrence of symptoms. Again, I’m thankful to have made it through my pregnancy without that happening. 

We live in this constant state of uncertainty, and it’s difficult to get used to that. Seriously,  how do you even begin to deal with that?? I honestly don’t know. I guess you just eventually get used to that uncertainty and start to mistake it for normalcy. Regardless, this is why I try to live my life in the moment. I will readily admit that I am not always successful at that. I am a major planner and like to know what I’m getting into, but I’m trying to be present in each day. Today’s a good day, so I will enjoy it and try to live it for all that it’s worth. And if tomorrow is not a good day… I guess we’ll deal with that tomorrow.

Thoughts on motherhood & ostomies

Being a mother, in many ways, is just how I imagined it would be. It’s fun, challenging, exhausting, full of love and snuggles. But I don’t think I ever could have imagined how strongly each of those feelings and emotions would impact me. It’s more fun, more challenging, more exhausting than I ever could have anticipated.

mothers day ostomy stolen colon stephanie hughes crohn's disease inflammatory bowel disease

My son is coming up on turning 11 months old this week. As I have gotten to know him over those months, I have learned a lot, both about myself and about parenthood in general. I have found that I can’t take my eyes off of him for more than a few seconds or he will make a break for the stairs. I have learned that no matter how good of a job I think I do at keeping stuff out of his reach, he will always find the one thing he shouldn’t be playing with. I have learned that my son’s laugh is the most incredible sound in the world. I have realized where I’m willing to take risks and where I am not. When previously I would have stepped on the gas to catch a yellow light, I now slow down and wait. Making that light may be worth the risk to my life, but it’s not worth the risk to his. It’s interesting to realize how differently you value and treat your own life as compared to your child’s.

Having a child certainly makes you look at the world differently. It’s as if everything you see is now filtered through a different lens. You think about what’s best for them, and how you can help them learn and grow. It also makes you think more often about the truly important things in life.

This past week, my son and I both came down with a cold. Nothing major, but just enough to where you feel pretty awful and you just want to sleep for a while. Well, as you parents know, kids don’t believe in taking a day to rest. I started feeling poorly after he was doing a lot better, so all he wanted to do was play and explore, while all I wanted to do was to take a nap. As he was staring at me, and starting to cry because I didn’t want to play, I thought about what it would be like if I was feeling run like this down all of the time. Those few days were difficult, but they were nothing compared to what so many individuals with IBD live through each and every day. It’s what I lived through every day for a very long time. It broke my heart to think of what it would be like if I had never had my surgery.

My son makes me thankful for my ostomy every day. It has allowed me to chase him around on the floor without feeling too exhausted. I can now break away for a quick moment to empty my bag, rather than spending a long time in the bathroom. I have the strength to pick him up and carry him around with me during the day.

On my first Mother’s day after his birth, I stop to think about what it means to be a mother. It’s about teaching your child how to navigate this world and to be a good and kind person. You show them how to love and be respectful of others. You give them the tools to make something of themselves and to chase after their dreams. But more than almost anything, it’s about being there for your child. And I am so thankful that my ostomy has allowed me to be there for mine.