2015 at The Stolen Colon

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!

2015 stolen colon year in review ostomy baby crohn's disease ileostomy ibd inflammatory bowel disease

Can you still get pregnant with an ostomy? – I used this post to announce my pregnancy at the beginning of the year, but what I love most about this post is what it represents. When my husband and I decided to try for a baby we didn’t know what would happen or how difficult it would be. I’m so happy that things turned out the way they did and being able to share that having an ostomy does not automatically mean you won’t be able to get pregnant.

My best advice for new (and old) ostomates – The 3 pieces of advice I think are some important for anyone going through surgery to get an ostomy: 1. Have a positive attitude, 2. Build a support system, 3. Learn by trial and error.

Body & weight changes after ostomy surgery – Getting an ostomy changes a lot of things. It not only is something new to deal with and to get used to, but it can change your body as well. And it may affect people differently, as some may lose weight, but others may gain.

First / Second / Third trimesters of pregnancy with an ostomy – Every 3 months I wrote about what the previous trimester was like with an ostomy and discussed what I had dealt with, what I was worried about and what I was excited about for the future. Each trimester held different excitements and challenges.

My thoughts on having children when you have IBD – I know the decision to have kids when you’re living with a chronic illness is not an easy one and there are people who decide against it. These were my reasons for making the decision to become a parent and I absolutely cannot imagine making a different one.

If I never had Crohn’s disease… – I was thinking one night about what my life would be like if I was never diagnosed with Crohn’s disease, and while I know there are a lot of things that would have been easier and less painful, in the end, having Crohn’s disease is part of what made me who I am today and I can’t wish that away.

Intestinal blockages during pregnancy – Can’t really say this is a “favorite” post, but it is an honest one about what I dealt with while pregnant with an ostomy. There are definitely extra risks inherent for anyone who has had intestinal surgery and then becomes pregnant, so I think it’s important to realize that and hopefully be able to avoid the same complications I dealt with during the end of my pregnancy.

My first NG tube experience – Again, not a post I enjoy, but a big experience for me this year was getting an NG tube. I’m one of the lucky ones who had made it this long living with Crohn’s disease and an ostomy and not having to get one, but it’s something that so many people with IBD will have to experience. I have a new respect for all of those people.

Waylon’s birth story – My son did not have a simple birth. I was admitted to the hospital 4 times over the course of 4 weeks before the decision was made to induce labor. This is the story of that final hospital admission and what led up to his early birth along with his first few days in the hospital.

My son’s first Ostomy Day – Having a child has given me a different perspective on so many things. Becoming a parent is truly a life-altering experience in more ways that I can explain because it’s not only a change in your schedule or a shift in your focus. You also start to see the world differently and try to look at things through the eyes of your children. And having a mother with an ostomy, I imagine will give my son a different perspective, as well.

It’s been a great year in 2015. Here’s to an even better 2016!

My son does not nap…

And that’s a big reason that I have not been around for a while. I apologize that I sort of fell off the face of the world for a while there. If I’m being totally honest… I think I was kind of hiding.

w no napIt started in October, when my son decided he no longer liked sleeping. (The 4-month sleep regression is real!) I was exhausted in every way possible. Thankfully, he has started sleeping through the night, but he still refuses to nap more than 30 minutes at a time and usually only twice, maybe three times a day. I left my full-time job to stay home with him, but I do have a part-time, work-from-home job, so any time I got him to go down for a nap, I’ve felt like I have to spend that time working. And even if I wasn’t working, there were a million things around the house to do. And then I sometimes just needed a little time for myself. I don’t like that it happened, but my blog kept getting pushed further down the list.

And whenever I would think about trying to write something, I got scared that I would try to stay up to date and I would fail and feel even worse than I do now. There’s a good chance that could still happen, but I know this blog is too important to me to let it slip away. I want to be here and I want to be present, but taking care of a tiny human takes more energy and time than I thought possible. Don’t get me wrong, I love being a mom more than I can even explain, but it is very hard keeping a good balance when your To-Do list always seems to be growing and few things are getting crossed off.

The Stolen Colon means so much to me. It has helped me get through one of the most difficult things I have ever faced in my life. It has given me the opportunity to meet and talk to so many people with incredible stories. It has brought me in contact with an amazing group of health activists and patient advocates. And it has taught me that I am not alone in the world. And that’s what I hope, more than anything, that it has done for others.

I’ve thought before, if I had to boil down the entire message of my blog into one sentence, what would it be? The answer I came up with is: To make the thought of getting an ostomy less scary. Yes, I also want to spread awareness and discuss other subject matters, but that one, simple idea is the most important message I want to spread. Because when I was faced with having my surgery, I was so scared. Scared about how it would change my life and how others would see me and how I would feel about myself. But in the end, I have found a life very different from what I had pictured and a life that I am so thankful has turned out the way that it has.

Today, my son turned 6 months old. He has officially been born for a whole half-a-year. It actually hit me kind of hard thinking about how long of a stretch of time that is. I think it is good that I have taken some time to focus pretty solely on him, and he’ll continue to be my top priority, but I want to make sure that I don’t lose the other important things in my life. I still want to be here and I still want to hear from you and talk to anyone who needs it. I will continue to try to stay on top of things and respond to people in a (somewhat) timely manner. You all have enriched my life so much and I honestly don’t know where I’d be without y’all. I hope to continue to be a part of your lives.

My son’s first Ostomy Day

My son will grow up in a different world. He will grow up in a place where having an ostomy is a normal thing. I mean, 1 out of his 2 parents will have one!

waylon ostomy 2He’ll know what a stoma is. He’ll understand there’s a difference between a colostomy and an ileostomy. He will celebrate World Ostomy Day. He will probably at some point blurt out to some stranger that mommy poops in a bag. He will know that an ostomy is not disfiguring. It is not gross. It is not debilitating. And he will know that it saved his mom’s life.

I pray that in knowing these things, he will understand that sometimes people are different from us and that’s okay. I hope he will always remember that you don’t know what’s going on in someone’s life below the surface, and that he will have patience and show kindness to everyone.

I hope some day he will meet someone with an ostomy or who may need to get one and he will be able to relate to them and let them know that it’s not something to be afraid or ashamed of. And if someday when he has a wife, if she ever has to deal with anything remotely similar,  I pray that he will support her and stand by her in the same way his father has stood by me.

waylon ostomy 1And while this is the world my son will grow up in, it’s not the world most of us do. Most people don’t have someone who can tell them that ostomies are not just for the old, or that they don’t make someone less of a person. We don’t have someone who is willing to show us that they are different and to let us know that it’s okay. That’s why when those of us who need an ostomy are faced with having to get one, we get scared. We run away. We learn to live with the pain. All because we are worried that our bag will show our weakness and others will think we are gross or weird.

But this is what I think the point of World Ostomy Day is: to make this world more like my son’s world. To help make it a world where our differences are celebrated. To let everyone out there know they are not alone and that they will get through this. And there’s a whole community of people out there who are going to help them do it.

World Ostomy Day Twitter chat

I have loved seeing all of the ostomy love this week! It’s been great being a part of the sharing of information and spreading of awareness. And it’s not over yet!

This Friday, October 2, I have the awesome opportunity to co-host a Twitter chat with the CCFA as a precursor to World Ostomy Day. We are going to have a great panel of participants, including a colorectal surgeon, a dietician and representatives from the United Ostomy Association and the Crohn’s and Colitis Foundation.

World Ostomy Day Twitter Chat

We will be discussing everything from basic ostomy information to details about surgery and recovery, as well as chatting about what it’s like to live with an ostomy. I would love it if you could join us. The chat will be held from 1:00-2:00 PM EST this Friday. You can follow along using #OstomyChat. You can also follow me on Twitter to see all of my tweets.

Please feel free to join in the chat by submitting questions or sharing some of your experiences using the same hashtag. And spread the word! I’d love for this to be able to reach some people who might not know much about ostomies and they can come away with a new understanding of what one is and what it’s like to live with one. After all, isn’t that what World Ostomy Day is all about? Chat with you Friday!