I’m headed to Philadelphia!

I actually can’t believe it’s just a couple of weeks away, but I am excited to attend this year’s UOAA conference in Philadelphia! This will be my first time getting to attend in the conference, so I am looking forward to that by itself, but especially so since I have been given the opportunity to speak this year. 

I will be talking about relationship considerations and having a family with an ostomy. I will be specifically sharing about my experiences with pregnancy and raising young kids while living with an ostomy. This subject is very important to me and I remember when I was faced with having surgery that one of my main questions was about my ability to have a family. I feel blessed to have been able to experience two pregnancies since having surgery to get an ostomy and I feel honored to be able to share that experience with others. 

So there are two things I wanted to put out there. First, I would love some feedback on specific questions you have about relationships, pregnancy and raising a family with an ostomy. I want to make sure that what I share resonates with those who attend, I would be grateful to hear some of the topics that you think would be interesting and beneficial. 

And secondly, if any of you are close to the Philadelphia area, I would love to see you there! Nothing brings me more joy that the opportunity to meet others in this community and to get an opportunity to hear your stories, as well. I will be speaking on Friday, August 8 from 10:00-11:30 a.m. If you are there, please come find me, because I would love a few minutes to get to chat with you. 

You can still register for the conference. Check out the UOAA’s website for information on what other great topics will be discussed and how to register to attend. 

Finally, I’m sure there are many of you who may have attended in the past. What was your experience like at the conference? Anything in particular worth knowing as a first time attendee? 

I look forward to getting to meet some of you in just a few weeks! 

Back to barrel racing after ostomy surgery

Terra’s story

January 25, 2012: The day my life changed…

A year and a half before, I was in a bad flare from Crohn’s Disease. I literally shrank to half the person I had been for 20 years. My hair was falling out, my face was turning gray, dark circles around my eyes and lips. Joint pain, terrible muscle cramps, no control of bowels and probably the worst thing was the large baseball size abscesses on my bottom. 

ostomy horse riding barrel racing

I forced myself to go to work as much as possible to keep my job. The hardest part about being sick for me was missing out on spending time with my horses. They have played a huge role in my life, even before I could walk. The Crohn’s made it difficult for me to take care of them, much less ride and compete. I AM A BARREL RACER! That is what brings me a ton of joy! But the Crohn’s had nearly taken it all away from me. I would have “OK” days and I would try to ride, but once my run was over I would be completely exhausted to the point that I would have to get help getting off my horse and I would crumple to the ground and have to sit there for several minutes.

Mid-December 2011, I went to my gastroenterologist and he said he thought it was time to take my colon out. This was something I truly did not want to do, but when the doctor said that I would continue to decline until I was no longer here, I realized that there was no other choice. My only question was: “Would I be able to ride once I was healed?” He assured me that I would still be able to. 

The colonoscopy before surgery showed that my colon was closing off in 3 places and in one spot had closed up so much that they couldn’t get the scope though. Not even the small one for the children.

January 25, 2012, was my surgery day. The plan was to remove only my colon, but once inside the surgeon saw that everything was so damaged that I ended up loosing everything—colon, rectum, and anus.

horse ostomy barrel racing rodeo

I went back to work 6 weeks later, but then had issues with the Crohn’s trying to attack the skin next to my stoma. This resulted in getting steroid injections directly into the skin. I had a very hard time getting the right appliances and sealants, and just wrapping my head around this whole situation. I had leaks all of the time, allergic reactions to adhesives, and I started to convince myself that I had made a huge mistake by letting them do this surgery. It took a full year to get things figured out and for my bottom to completely heal up. 

I certainly can’t say that I am “OK” with this ostomy, but it has improved my quality of life and given me back my ability to ride again. I rarely have a leak anymore and the only things that need done to prepare myself to ride is to wear snug fitting jeans and to make sure my pouch is emptied out before I get on. 

Never give up on the things that bring you joy and happiness. Hope is being able to see there is light despite all of the darkness.

#OstoMYstory

Baby wearing with an ostomy

I have two young kids, both of which have been fairly clingy. Basically, they like to held All. The. Time. So what’s a mom to do when her kids don’t like to be set down? Wear those babies! But since most carriers cover your front torso, it can bring up concerns of whether or not it’s possible with an ostomy. And since I desperately needed the use of my hands from time to time, I am thankful that I found ways to make baby wearing with my ostomy possible. Of course some carriers are easier to use than others, and some may require adjustments while others do not. This video shows the carriers I have used and had success wearing with both of my kids. 

Links to carriers used:

Ring sling (Sakura Bloom)
Wrap (Moby)
Structured carrier (Tula – standard)

This is not a sponsored post and I do not receive anything if you decide to purchase one of these product. I do not necessarily recommend these carriers over any others, but they are good options to consider. These carriers are simply the ones I used with my kids based on research and recommendations and I have included links to the products purely for reference. This list is not exhaustive of all styles or brands suitable for using with an ostomy. If you are interested in baby wearing with an ostomy, I encourage you to try out different options to figure out what works best for you!

Surviving the holidays with an ostomy

Y’all, I love the holidays. I love how the world transforms into a different place for one month of the year. I love finding reasons to celebrate with family and friends. I love all the yummy food there is to eat. I love being intentional in thinking about what we are thankful for.

What I don’t love is all of the obligations, stress, and complications that often arise this time of year. Things like over-eating and stress can take what should be a joyous experience and turn it into a nightmare, especially for those with an ostomy or any chronic condition. I put together a quick survival guide for getting through the holidays and trying to enjoy the season.

1. Eat wisely.

Don’t eat all the food that is put in front of you. I know it is so yummy (and plentiful!), but overindulgence always leaves me feeling icky. My mom makes the best turkey dressing I’ve ever tasted. It’s one of my favorite parts of Thanksgiving and I look forward to it every year. The downside: It contains walnuts. And nuts are the number one thing that gives me blockage issues. So while I’d love to eat the entire dish of dressing, I make sure to put a reasonable amount on my plate and take extra care to chew it well. For anything else that may cause an issue (like my grandmother’s corn casserole) I take a small amount. Even though I avoid corn most of the time, allowing myself a small scoop helps me to not feel deprived of my favorite foods, but also to not regret eating it later.

Another things is to try stop eating before you are completely stuffed. This always leads to a large amount of output later, usually overnight, which can then lead to leaks. For this reason, try not to eat too close to bed time. Give your body time to digest the food before you turn in for the night, even though I know that turkey just makes you want to sleep right away!

2. Hydrate, hydrate, hydrate.

I sound like a broken record with this one, but it’s the biggest issue I deal with on a daily basis. I am constantly dehydrated, and it leads to so many other issues (fatigue, headaches, joint pain, dry skin, frizzy hair, thick output, bag leaks). It’s especially important to keep in mind during the holidays when alcoholic drinks are readily accessible and events often involve mingling, making it difficult to keep track of how much water you’ve had to drink.

Try drinking extra water before arriving at the event, so you’re already hydrated when you get there. For every alcoholic drink, drink a full glass of water after it. I always have a bottle of water in my bag and my car, so I never have to worry about finding it when I’m somewhere new. The winter months can also mask how dehydrated you are since you’re not sweating as much or feeling exerted, but trust me, it’s still happening!

3. Lose the stress.

This one is not specific to having an ostomy, but with having IBD, I know for me personally that my symptoms have often worsened during times of high stress, and the holidays are often full of that. One of the hardest parts of the holidays is simply how much there is going on. There are parties to attend, parades to watch, Santa to visit, family members (who may not be your favorite people) to entertain, and many, many presents to buy. I have been learning how to say “no” more often and with more conviction. I try to pace myself, get plenty of rest, and to not stress out about all of the things that I have to do.

My son is 3, so we’re at the age where he’s starting to enjoy different experiences. Last year, I wanted to try out several events  in our area to figure out what might make a nice tradition going forward. Ultimately, I found I wasn’t enjoying any of it because it was all just too much and I felt we ended up losing so much of the joy of the season. This year, I am scaling back. 

If you are feeling stressed already, try to find things that you can cut out. Maybe it’s hosting dinner, traveling, or going to 30 different tree lighting events and parades with your kids. Cut out what’s bringing you down, and maybe try to find some time where you can do something that you want to do, and not just what you feel obligated to do. Whatever it may be, try to find a way to enjoy this time and let the season be magical and not a burden.

Potty training your kids when you have an ostomy

Potty training. This is definitely one of the things that did not cross my mind when I was making my decision to get an ostomy. But it goes to show that there are plenty of ways that having an ostomy will impact your life that you will not immediately imagine.

I currently have a 3 ½ year old and a 16 month old. We just went through the whole potty training experience with my son just before his third birthday. It was an interesting experience because, as I realized, I do not pee or poop like he does! How in the world was I supposed to teach him to how to transition from diaper to toilet?

I mean, seriously here, I have not “pooped” now in more than 6 years and I honestly don’t even remember when I last had a solid one, but it was quite a while before that! And wiping bottoms again?! I thought I was past that stage in my life!

But just as with so many ostomy-related things, it’s something that I was able to deal with by preparing and taking a little extra care. toilet potty training ostomy children IBD crohn's disease ulcerative colitisUltimately, I do not believe the ostomy really affected the potty training process to a large extent. We still both sit on the toilet (at least for the time being), so he could grasp that part. But I made sure to take the time to explain to him that I poop differently and it comes out of my bag, rather than my bottom. It gave us a good opportunity to talk about the process, what he could expect, why we do it and all that. I have not gotten too deep into a discussion of my ostomy with him, but he knows that I was sick and it made me feel better. I’m sure that conversation is coming in the not too distant future and I will be sure to update when I do!

For the actual potty training process, I’m sure it was pretty much the same as it is for anyone. Early on I got one of those stand along toilets so we could start a conversation and he could get an idea of what it’s like. He would occasionally want to sit on it, but other than one random time, he never actually used it. And that one time completely freaked him out. Around 2 ½, we started the actual process of sitting on the toilet and used one of the smaller seats that goes over the regular toilet seat. He did great for a week or two and would sit on the toilet and pee in it when I asked him, but he would not tell me he needed to use it and would not poop in it at all. After that first week or so, he was over it and refused to sit on it again. So we held off for a couple of months.

We tried again and had a similar experience, where he did great with peeing but would not poop in the toilet. It became frustrating for me because either he couldn’t wear underwear or I ended up cleaning up a lot of poop accidents. (And let’s be honest, I’ve dealt with enough of those in my life!) So I decided to wait a little longer.

Right around his third birthday, we gave it another shot and this time I loosely tried the 3 day method where you stay home, no pants, drink a lot of water and going to the bathroom is literally all you do those days. At this point, I think he was just ready. Of course we had some accidents those first few days, but they were mostly overnight or when I was taking care of his sister and unable to help him out. Within 2 weeks, he was set. Only the occasional accident that you can expect from a newly potty trained child.

To be honest, I was a little anxious about how to handle this process with him, since you are encouraged the let them see you use the bathroom, so they can understand that others do this and can see it firsthand. Even though I do things different, it was a good opportunity for us to talk about using the bathroom and get into at least a surface level of my current situation and how I got here. I have never shied away from letting him see my bag and to answer any questions about it, but I don’t think he’s been to the point of being able to grasp what it means just yet, but I do think he will start being able to understand more in the not too distant future. In the meantime, I’m glad to share with him some of what makes me different and to celebrate those things that make us who we are.