Category Archives: Stolen Colon

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

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.

3 tips to prepare you for ostomy surgery

Regardless of whether you have been talking about surgery for a long time, putting it off for just as long, or it may have just recently come up, but there comes a time where you know it’s inevitable. At least that’s how it was for me. I went through weeks and months of hoping for another option, but ultimately, I knew what I had to do. (You can look back at some of my very early posts to hear a little more about it.) But once I officially knew it was happening and had about 2 weeks until the surgery, I didn’t really know what to do during that time. Having been through it now and looking back, these are the things that helped me prepare before surgery or that I did after surgery and wish I had done sooner.

Find someone to talk to.

So so important! I can’t tell you what a difference it made just talking to someone else who had been through the surgery. I was blessed to be connected with a friend-of-a-friend…of-a-friend… who had an ostomy and had gone through surgery at about the same age that I was. (You can read about my initial meeting with her.) She had lived with it for a while, had kids, and done many other things that I had hoped to be able to do. It was so comforting to hear from her and to see that she did not look any different from any other person.

There are UOAA groups that help to connect individuals who live in the same area and you can also speak with the nurses who are helping you prepare for surgery about trying to find another person to speak with about living with an ostomy. However, not everyone is able to get connected in person with someone else in a similar position face-to-face, but there are many great options for talking to people online. I do, however, advise caution in looking online, because while there are great positive resources out there, there can also be a lot of negative ones, as well. And if you need someone, I always try to be that person to others whenever I can.
ostomy supplies brands coloplast convatec hollister prepare for surgery

Order supplies.

If you know surgery is coming, order some supplies now! All of the major ostomy suppliers have programs where you can sign up to receive free samples of their products. (Links to their request pages: Hollister, Coloplast, ConvaTec) This was great for a number of reasons. First of all, I have said before that everyone is different and the supplies that work for me may not work for you, and vice versa. I think it’s best to try out the many different options and figure out what fits best into your life and what feels the most comfortable. Plus, each of the samples came with a kit and a lot of good information. The companies followed up with me to answer questions and send additional supplies, when needed. When I came home from the hospital, I had a very large, transparent bag on and I felt so uncomfortable. Once I switched it out for an opaque bag I felt much more confident. It was a little change, but it made a big difference and I was so glad that I had the option once I got home. Finally, getting the supplies will last you for several weeks after surgery, so it’s nice to not have to place a large order right away.

Break the tension.

I was terrified before my surgery. I was hopeful, because I had to be since I had run out of other options, but I was still terrified. I booked my surgery for as quickly as possible because I was afraid I wouldn’t go through with it if I thought about it for longer. (I even asked my surgeon how much of a heads up would be appropriate if I changed my mind! I assured him I wouldn’t, but it made me feel better to know that I could.) But the night before my surgery, I was laying in bed with my husband and looking for ideas for what to wear under my clothes with the ostomy. Thankfully today there are some really great and sexy underwear options out there, but a few years back, that was not really the case. I found some really hideous options and I showed them to my husband and we started laughing hysterically. It was one of those moments where if you don’t laugh, you’ll cry, and I really needed to not cry. I realized that I had to break the tension and not focus on everything I was afraid of happening. I encourage you to try to find something like that to help you get through those difficult times.

Going through surgery is not easy, no matter what situation you are in or what your health is like prior. But hopefully, these tips can help you to prepare the best that you can. I know there are things that others have done that can help, too. What is something that helped you prepare for surgery? Or that you wish you had done beforehand?

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For all the mothers—whatever that might mean

I have mixed emotions about Mother’s Day. Part of me sees the immense value of taking time to thank and appreciate those who gave us birth, who raised us, who taught us, who loved us—whatever motherhood has looked like in your life. These women are strong, brave, and loving and, damn it, they should be celebrated! As a mother, a daughter, a woman, I definitely think that the role mothers play is often undervalued and underappreciated. But part of me feels this day merely sets women up for disappointment, as we are bombarded by social media as to what Mother’s Day is supposed to look like and how your day is just not measuring up.

And that’s not to mention all of the emotions that this day brings up for some. There are many who have lost their mothers, to death, estrangement, or mental illness. There are many who have found the road to motherhood to be more challenging than they had imagined. There are those who have chosen not to become mothers themselves, and find themselves having to defend the personal decisions they make.

Sometimes we forget that motherhood takes on a variety of forms. There are those with more kids than you can count on your fingers. There are those with sons, daughters, or a combination of both. There are those who hope to be mothers one day. There are those who desire to be mothers now, but have had difficulty in their journey. There are those who are mothers, but have never been able to bring their child home. There are those who have had to bury their children, something no mother should ever have to do. There are those who have birthed children, but those children have gone on to live with others. There are those who did not carry a child themselves, but welcomed them into their home. There are those who have joined other families already in progress. There are those who do not desire to have children of their own, but have a mother’s spirit for other children they encounter. There are those who mother as part of team and others who stand on their own. There are those who have used medical assistance to conceive children. There are those who have birthed children through medical procedures. There are endless possibilities for what mothering may look like for you and for others.

As someone who is a part of the chronic illness community and the surgical intervention community, I have seen my share of women who have experienced setbacks and challenges in their motherhood journey.

For those with IBD, there is no impact on fertility and the ability to carry a child, but there are still studies that show these patients are less likely to bear children. This is most often due to concerns over their own health conditions, concerns about the medication they take and also concerns about the heredity of their disease. So even though fertility may not be affected, this diagnosis still influences their motherhood experience.

Thankfully studies show that the risk of passing along IBD to children is low (less than 10%) for couples where one individual has IBD. Furthermore, most medical treatments have also been shown to be safe during pregnancy, and those which are not considered safe can be replaced with other options, if necessary. So if your desire is to have children, talk to your physician about determining the best options for you!

And those who have undergone surgery, whether it be for an ostomy, a j-pouch, or a resection, still have a strong chance of being able to conceive and carry a child, but there is a higher risk of  an impact on fertility. This may eventually require further medical interventions or exploration of other options for becoming a mother.

Fertility is a difficult topic for many women, because the ability to conceive and bear children is often tied to their identity and sometimes their feelings of worth as a woman. I am not saying it should be this way, but this is how it is for many women. I know when my husband and I first decided we wanted to have kids, I was so hard on myself every month it didn’t happen. Every negative test felt like failure.

And in the grand scheme of things, my conception story was much simpler than many women out there. I conceived both of my children following two surgeries: removal of the colon (colectomy) and removal of the rectum/anus (proctectomy). It didn’t happen immediately for us, but conception was not something we struggled with ultimately.

After fairly uneventful first half of the pregnancies, I ended up in the hospital due to intestinal blockages both times. I had to undergo bowel rest, CT scans, X-rays, and strict dietary changes in both instances, and a premature inducement in one. I felt an incredible amount of guilt for feeling that I already was not being able to protect my child and having to make the decision to do something that could be potentially harmful to the baby because of my health issues. It was a deflating feeling and something I have struggled with as a mother.

My story is just one in a vast expanse of mothers all around the world. We all have a story to share. Our journeys to and in motherhood are all different, and difficult and heartbreaking in their own ways. But we are all in this together. So today, whether you are a mother, long to be a mother, or none of the above—You are seen. You are loved. You are in our hearts.