Tag Archives: recovery

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.

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 →

Why I freak out when I see one of these

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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.

Even 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.

2015 at The Stolen Colon

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I’m always amazed at the end of each year as I look back and realize all that happened in the past 365 days. Obviously 2015 held even bigger changes than previous years as I announced my pregnancy at the beginning of the year and gave birth (amid some ostomy drama) to my son. And if that wasn’t enough, in my personal life, we settled into our new home that we moved into just before the beginning of the year, I decided to leave my full-time job in favor of working from home and getting to spend time with my kid, and celebrated 5 years of marriage to my husband.

I thought I’d take this chance to highlight some of my favorite posts from the past year. I actually had a hard time narrowing this down because there were a lot of posts that really meant a lot to me this year. It’s pretty pregnancy / baby dominated, but I’m OK with that!

Continue reading →

When your body fails you

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I wanted to share something I wrote just 3 days before my son was born. This was after 3 hospitalizations for an intestinal blockage (which you can read more about here) and just 1 day before I admitted myself to the hospital for a fourth time and eventually would have labor induced. It was definitely not what I had planned and it took some time for me to come to terms with the idea of letting go of the labor and birth I had desired.

There comes a point with this disease that you start to feel like your body has failed you. For me, that point was a long time ago. Longer than I can remember. And I am very thankful that I haven’t felt that way in a long time now. But by the time I admitted myself to the hospital for the third time in as many weeks, all of those feelings started flooding over me again. And this time they were even worse because I didn’t feel like I was just failing myself, but failing my child, as well. My child hadn’t even been born yet and already I couldn’t take care of him. I couldn’t get him everything he needed.

And when the doctors started talking about having to take him early, because my body wasn’t doing what it was supposed to do, it scared me. I had promised myself from the beginning of this pregnancy that I would not be one of those people wishing the baby out earlier than he was ready. Because I know that they stay in there for a reason and that when he was ready, he’d come. I didn’t want to wish any negative side effects on him simply because I was uncomfortable.

But I was also dealing with the fact that keeping him in could be just as dangerous. I had to stay healthy in order to keep him healthy. When things started going downhill for me, I had to take medications, stay away from some of the healthy, but hard-to-digest food I was eating, and spend long hours in the hospital, all of which could cause him harm. Still, the last thing I wanted was for him to enter the world surrounded by cold machines and being hooked up to tubes and wires. I have spent enough of my life there that I hope he never has to know that. I wanted the first things he knew to be me and his dad and how much we love him. I wanted it to be warmth and excitement, not being whisked away to a NICU.

These are feelings I don’t know how to move past. It’s a hard place to be when you feel like you can’t trust your own body. All I can do is pray and trust that God will see me through and will take care of my little one, whenever and however he arrives.

I cried the entire time I wrote these words, feeling so uncertain and scared. I am so thankful that God did see me through and He did take care of my little one who was born at a healthy weight, did not have to be hooked up to any tubes or wires and spent no time in the NICU. He came out to that warmth and excitement I had hoped for him. You can read the full story here.

So while things did not go exactly as I had planned, in the end we had a healthy little boy. And during the induction, my body stepped up and allowed for a smooth delivery. It’s like it knew it was time for him to be born. I guess it wasn’t as much of a failure as I had thought.

The Stolen Colon | Living beautifully with an ostomy

Stephanie Hughes | This blog is my way of connecting with the world about living with an ostomy and Crohn's disease.