Tag Archives: ileostomy bag

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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My ostomy testimony

6 years.

stephanie hughes stolen colon ostomy anniversary inflammatory bowel disease crohn's ulcerative colitis ileostomy ibdThat’s how long it has been since I have been living with an ostomy. That’s close to 20% of my life. Now after spending more than half a decade without a colon, where does that leave me? How do I feel about the new life I have? My outlook last year was fairly grim, after I had just spent a week in the hospital due to an intestinal blockage during my pregnancy. But things are different this year.

Even though I have dealt with a few issues since my surgery in 2012—inflammation in my eyes, having the rectal stump removed due to lingering inflammation, intestinal blockages during both of my pregnancies—I have not had any true recurrence of IBD since my surgery and have not taken any IBD medications since that time. Do I love my ostomy? Nope. My goal here is not to shout out, “Having an ostomy is the best thing ever!” Because it’s not. But last week I had an ileoscopy (think colonoscopy without the colon), and afterwards I received the best news that anyone with IBD can get—no signs of disease activity! And that, my friends, is what makes me want to shout from the rooftops.stolen colon inflammatory bowel disease crohn's

It has not always been an easy road with my ostomy and I still have a love-hate relationship as I continue to grapple with feeling self-conscious or concerned about leaks or worried how others will react to it, but ultimately those pale in comparison to the memory of needing to use a walker to get myself to the bathroom many, many times during the day and spending more nights than I want to count in a hospital bed. I still don’t recommend surgery as a first choice in treatment, since I think most people need time and the opportunity to explore other options before committing to this one. I know I did.

stolen colon sedimentation rate graph ostomy inflammatory bowel disease crohnsBut when my lab results look like this (Sedimentation rate is a marker of active disease. That crazy outlier is from one month before my surgery.) and can keep me off meds and out of the hospital (at least for the most part), I’m going to say that it was the right decision for me. That’s how I have been able to embrace this new life, even with all of difficult parts that come with it. And looking back now, 6 years later, I do not regret it for a second.

A QUICK NOTE ABOUT HAVING AN ILEOSCOPY: This is my second scope since my surgery in 2012. I had one in 2014 and now in 2018. I also had an upper endoscopy performed this time. I have had these done as a preventative measure. We know that if symptoms start to arise, the faster we can start treatment the better your odds of getting back to remission. And often, signs will be seen in blood work or through a scope before they manifest into physical symptoms. So I decided to try my best to stay on top of things and not give any inflammation or disease recurrence the chance to sneak up on me. My GI and I have a plan for annual appointments and blood work and doing a scope every 3-5 years. Thankfully an ileoscopy is a simpler process than a colonoscopy since the prep is not required!

 

 

 

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Learn how to change your ostomy bag in under 2 minutes

This video is meant to show in under 2 minutes how to change an ostomy bag and the speed of the video has been changed to allow that. The timer in the corner shows the actual time of the bag change, which was just under 5 minutes. Please note that I have had an ostomy for 6 years and that may not be a realistic time for someone just starting out. There are some great videos out there that go into a lot of detail on how to change the bag and going step-by-step, but some of us may not have the time (or patience!) to sit through a 10-20 minute tutorial. The hope here is simply to provide a quick guide for getting started.

The process of changing a bag will vary depending on the type of bag you use (such as a one-piece or a two-piece that snaps together or a pre-cut flange) and the types of accessories you like. The accessories shown here are the ones that I have found that work well for me, but they are not necessary and there are plenty of other options out there that may fit better with what you need.

I do not recommend specific products since I believe that different products work for different people and situations, but for your reference, these are the products used in the video:

  • Coloplast SenSura Mio 2-piece flex flange and pouch
  • Hollister Adapt skin barrier paste
  • ConvaTec AllKare protective barrier wipes