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.
When 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. Continue reading →
When you have surgery to remove your colon and to get an ostomy, your body sometimes reacts in unexpected ways. I can’t explain why it does what it does, but when you majorly alter your body’s normal functions, then it is going to impact other things, as well. I’m sure it reacts in different ways for different people, but there’s a good chance your body will undergo some big changes, one way or another. This was something I wasn’t quite ready for prior to my surgery.
I have debated talking about this because it does not always seem acceptable for a thin person to talk about weight issues. You usually get dismissed as either being ridiculous for worrying about your weight or as bragging about how skinny you are. That’s not my intention here. I think this is an important topic and something that changed for me over the past few years that I did not necessarily expect when I first decided to have this surgery.
Simply put, I’m just kind of a small person. I was before my surgery and I still am afterwards. I am only 5’2″ (and 3/4″!) and for most of my adult life, I have weighed between 100-110 lbs. Of course there are a few outliers in there and to be even more specific, my range was really between 103-108 lbs and would fluctuate between those fairly often. That was my sweet spot. And I knew that if I got below 103 lbs that I was losing too much weight and needed to put a little more on, and if I got over 108 lbs I would start noticing it (in my face mostly) and would do what I needed to drop a pound or two. Even once I got up to 109 or 110, without weighing myself, I would know that I was a little higher than I liked to be.
But after my surgery, things started to change pretty quickly. Within just a few months, I started to notice my weight going up. The funny thing, though, is that I didn’t feel like I was gaining weight. I didn’t notice it when I looked in the mirror or think that I should lose a few pounds. (Although, I do have a couple of pairs of skinny jeans from prior to surgery that I still am unable to get on.) I finally settled in around 111-115 lbs. And that’s where I’ve remained for the past couple of years.
I realized something recently about my ostomy. It’s actually something I’ve dealt with pretty much ever since I first got my ostomy, but I didn’t really understand what it meant until last week.
So I get very self-conscious when my ostomy bag shows underneath my clothing. And honestly, it doesn’t happen that often, but I definitely have a few outfits where it does not hide very well beneath or I have times when the bag gets a little full and it puffs up. Now I realize that you may be thinking that this is not a particularly weird way to feel and is most likely anyone’s normal reaction when they have an ostomy. But let’s remember now… I pretty much tell everybody in the world that I have an ostomy.
I mean I blog about it, I put updates on Facebook/Twitter/Google+, it’s listed in my LinkedIn profile, I go to Crohn’s and/or ostomy related events as often as I can, and I talk about it pretty openly with just about anybody… so why am I so worried if someone can see that I have an ostomy? Let’s be honest, they probably already know that.
But I got that really self-conscious feeling the other day when I was wearing this shirt that did not hide my bag very well and I had to stop myself and ask that very question. That’s when it hit me: I’m not really worried about people knowing I have an ostomy. I’m worried that people will see it. But there’s more to it than that.
Probably my biggest goal/hurdle as an ostomy advocate is showing people that having an ostomy is not something to be scared of. It’s not something that is going to ruin your life or even change it as much as you might think. Prior to my surgery, I thought I was going to live my life in oversized, unfitted clothing. But I was wrong. I’ve said it before, but I have not thrown out one piece of clothing since I got my ostomy. I may have changed the way I wear things slightly, but there is nothing that I wore beforehand that I can’t wear now.
I want people who do not understand what having an ostomy means to realize that if someone wants to keep an ostomy hidden, then they can keep their ostomy hidden! It does not have to be on display. It is not something that everyone will notice and point out. But when I am walking around in a shirt that doesn’t hide it particularly well, I feel that it’s contradicting everything I have said. If people can see mine and then I try to explain that ostomies are easily kept private, they may come back with the fact that they’ve been able to see mine before. And that kind of concerns me.
Maybe I’m being silly. I probably am, but I do feel that pressure of being a representative of those living with an ostomy to those who may not even know what one is. I know I really shouldn’t worry about it so much, especially when I’ve realized a couple more things… First of all, it’s never usually as bad or as noticeable as you think. And secondly, most people are too wrapped up in their own worlds to even notice. (I don’t mean that to sound so cynical, just honest.) And on top of all of that, this is an easy fix. I will still wear that same shirt again, but I’ll do it a little differently next time. I feel like that’s another blog post for another day.
I have debated for a while about writing a post on sex. I know my parents and my parents-in-law and even my grandparents read my blog (I’m giving you fair warning that this is one post you can skip!), but I know that sex is an important subject when it comes to ostomies. It’s probably one of the first questions you have when you know you are going to have surgery. I know it was for me. You wonder not only about the “how is this going to work?” but also the “how am I going to feel?” It’s also a hard question to bring up for many people, so I figure… let’s talk about it! And we’ll talk about it online so you don’t actually have to bring yourself to ask about it.
Like I said, one of my first questions once I decided to go through with the surgery was, “how is this going to affect my sex life?” Thankfully I had a surgeon who this wasn’t his first go-round and he knew it was probably a question I had so he brought it up without making me have to. He told me that it would not change anything majorly, but it would be an adjustment, especially after getting the rectum removed. The rectum is right up against the vaginal canal and provides support, so no longer having it made things feel different. Not bad different, just… different. Continue reading →