Fighting against myself

I had a rough run this past week. It was a 10K here in Raleigh that I had signed up for a while ago. A man, was that a hard 6 miles.

It was my own fault; I fully admit that. I hadn’t trained well, I hadn’t been staying hydrated, I didn’t warm up a lot beforehand. I also spent the previous week at a trade show for work which meant three days of standing for eight hours straight in high heels. Not the ideal way to spend the week before a race. Plus, it was cold and rainy outside. Basically, it was the perfect storm of awfulness.

This was also my first 10K. Actually, it was my first race that was not a half-marathon. Half-marathons are all about pacing. 10Ks are a bit different. Too short to need to put as much focus on pace, but too long to just run all out. I had planned to try to focus on training on getting a little more speed. I was simply hoping to break the 1:00:00 mark. But a number of things going on in the past few weeks and months had gotten me out of the habit of running and training as I had planned.

10k race run stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon top 10 reasons to have an ostomy ileostomy colostomy urostomyAnd the moment I started running this race, I could tell it was not going well. My legs felt heavy and I was immediately exhausted. I also did not run with my phone, which I usually do. I got the new iPhone and it doesn’t fit in the pocket very well, so I figured I would just go for it without timing myself and see what happens. (Yah, I know, I need a watch.) I also somehow ended up at the front of the pack when the race started. It was a small race, only like 115 people, but still, I am not a front of the pack kind of runner. So I immediately got myself over to the side so the other faster people could pass, but then I realized just how depressing it is to see dozens of people passing you along the way.

I kept telling myself to just keep moving. It was hard. The course was very hilly, especially at the Start/Finish line area. I felt like I was moving at a snail’s pace. I kept trying to figure out in my head how long it was going to take me, since I didn’t have my phone to help me pace. I felt for sure that I was doing like a 13:00 mile, which is slower than I’ve run for all three of my half-marathons.

Much to my surprise, however, I ended up running across the finish line at 1:02:54. I was both excited that I was not running nearly as slow as I thought (It was actually a 10:08 pace), and also frustrated that I was so close to my goal and didn’t quite make it. I knew that if I had trained just a little better or if I had been pacing myself during the race, I probably could have cut off those 3 minutes. But of course, I can’t go back.

I am not fast and let’s be honest, no matter how hard I train, I will never be a race winner. I am just not built for it and I am fine admitting that. But I do at least want to feel like I am a competitor. As I was running and watching so many people pass by me and feeling sorry for myself, I had to keep reminding myself that I was not there to race anybody. I was only racing against myself. I was only fighting my own body.

And you know… isn’t that what we have spent so many years doing? Pushing ourselves… Moving on in spite of the pain… Searching frantically for the finish line… And that’s part of what I love about running. It’s such a great metaphor for our life and our journey through it. It’s not always easy, it’s not always fun, and sometimes it just downright sucks. But if we keep going and keep pushing ourselves to take that next step, we can get to where we’re going. And no ostomy or Crohn’s disease or ulcerative colitis can hold us back.

Post-Ostomy Day hangover

I’ve been spending the past few days in upstate New York. My husband’s family lives up this way, so we’ve been enjoying some time with them and celebrating at his cousin’s wedding. It has been a wonderful time, but unfortunately, it coincided with a very important day for me: World Ostomy Day.

World Ostomy Day is meant to be a specific day where ostomates around the world come together to spread awareness and to show that their ostomies are not slowing them down. As an ostomy blogger, I kind of feel that every day is “Ostomy Day,” but it is important to have some time set aside to talk about it as a larger group. And I am still reeling from all of the awesomeness I saw happening yesterday and the stories that were being shared.

World Ostomy Day WannaWearOne 5k stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon top 10 reasons to have an ostomy ileostomy colostomy urostomyWhile I’m so glad we got to be a part of this wedding and I wouldn’t have changed anything about this weekend, it does make me sad that I was not able to participate in the day as much as I would have liked. I am disappointed that I did not get to run in the first WannaWearOne Ostomy AWEARness 5K in person, even though I still ran a 5K yesterday morning as part of the virtual run.

And I did keep up with the things that were going on for Ostomy Day, even if just on my phone between the ceremony and reception. And as I sit here on the back porch in the crisp fall, New York air, looking over one of the most beautiful views, I think about how thankful I am. I think about how thankful I am that I am not alone in this. That there are others binghamton ny fallout there who have dealt with some of the same things I have in the past, who live with some of the same struggles I do now, and who have found a new life living with an ostomy. I feel like that’s the real point of World Ostomy Day: to show others that an ostomy is not a death sentence.

I am so proud to be a part of such a strong group of people who are living life despite being dealt a pretty crappy hand and who are making the best of a difficult situation and who are learning to not be ashamed of being different, but rather to embrace the freedom they now have. These are people who inspire me and continue to push me forward. They give me strength to sit here and write and to share my story and to never, ever apologize for who I am or whatever may be hanging off of my stomach.

And I pray that this continues long past World Ostomy Day. I pray that people continue to tell their stories and not let having an ostomy hold them back from anything in this life. I was talking with my friend Rebecca the other day and trying to brainstorm some good ostomy hashtags and she came up with one I love: #OstoMYstory. So I asked her if I could steal it!

This blog is where I tell my story, but I want to encourage you to not be afraid to tell yours, too. Be proud of what you have come through and the things you have fought against. Show the world that you can still live a fabulous, beautiful life with an ostomy! Happy Day-after World Ostomy Day!

Ostomy FAQ

Frequently Asked Questions (and Answers) about Ostomies

Mention the word “ostomy” to most people and you’ll likely get either a blank stare or a confused look back. Because of this, ostomies are often very misunderstood, even by people who are very in tune to the inflammatory bowel disease/gastrointestinal world (I know I was one of them). So I have attempted to put together a list of Frequently Asked Questions when it comes to all things ostomy.

This is based on my experience with an ileostomy, since I don’t have a colostomy or urostomy and am not as familiar with how they work, even though a lot of the information is relevant to all three types.

World Ostomy Day frequently asked questions FAQ stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon top 10 reasons to have an ostomy ileostomy colostomy urostomy 101

What is an ostomy? An ostomy is a non-natural opening in your body by which a person releases waste. (Read: What is an ostomy?)

What’s the difference between an ileostomy, colostomy and urostomy? The type of ostomy is dependent on what part of the digestive tract is used to make the stoma. An ileostomy uses the small intestine, a colostomy uses the large intestine and a urostomy uses the ureter and part of the small intestine. (Read: Ileostomy, colostomy, urostomy: What’s the difference?)

What is surgery to get an ostomy like? There is no major prep for surgery other than not eating for 24-hours beforehand. The surgery itself is called a colectomy (can be partial or full) and usually takes around 4-5 hours. The procedure can be done laparoscopically or the surgeon may make an incision. They will remove the colon (or part of it), create a stoma, and close off the rectum/anus. They may leave a piece for future reconnection or they may remove the entire thing.

What is the recovery period? Having your colon/part of your colon or bladder removed is a major surgery, so be prepared to give your body plenty of time to heal. You will spend at least 3 days in the hospital, possibly up to a week or even more. They will want to make sure that your ostomy is fully functioning. Most doctors say 6-8 weeks for recovery. This will depend a lot on the surgery, whether it was laparoscopic or open. Even then, it really takes about 6 months to feel totally normal again (but I believe this is true of most major surgeries.) And that doesn’t mean you will be feeling bad, but maybe just not feeling 100%.

Will I still be able to do the same things I do now? Yes, you will! Having an ostomy will not keep you from taking part in any of the activities you currently enjoy. There may be certain activities are times when you may need to do something a little differently, or perhaps less frequently. (Think: sit ups, certain stretches, etc.)

What does the bag feel like? When you first get the bag, it will feel very foreign, but after a few weeks you will stop noticing it so much. You usually can’t feel it until it gets filled up and heavy or if it starts pulling away from the skin. Because of the acid in your poop, the area around the stoma may get irritated, which can be painful. Also frequent bag changes may lead to irritated skin.

What does the pooping feel like? You really can’t feel it. I know it seems like you should, but you likely won’t notice it until your bag gets heavy since there are not feeling sensors in your intestine. The only times I usually notice it being active is if I am laying on my stomach or if it is has gotten under the wafer and started to leak.

What about leaks? To be honest, leaks are going to happen at one point or another, but they don’t have to totally wreck your day. The key is to learn to recognize the signs of an impending leak and to be prepared for when it does happen. Signs such as itching around the stoma or a feeling of the bag pulling away from the skin may indicate that a leak is beginning. Keep supplies handy so you can swap out the bag if need be.

Will others be able to smell it? Most likely no. You may smell it a lot right at first because it’s new, but other people aren’t going to notice it. You may still catch a whiff of it every now and again, but it’s usually never enough for another person to nice, much less associate with you. The one exception may be in the case of a leak.

What about passing gas? You will still pass gas and, unfortunately if you have an ileostomy, you are not going to be able to control when it happens. However, in my experience, most times it will simply fill the bag up with air. Very rarely do I deal with any “fart” noises. The exception is in the first few weeks after surgery, when your body is adjusting you will likely have a lot more gas that you will later on. Be aware of the possibility of this causing leaks when you’re asleep.

Can I still have sex? Yes, you can. Having an ostomy really doesn’t change anything about having sex, except that you do need to be aware of the bag so it doesn’t get pulled on or anything like that. Wearing an ostomy wrap or maternity band is a great option for keeping the bag out of the way. (Read: Out of the Bag: Sex with Ostomy)

Will I still be able to get pregnant? You can still get pregnant with an ostomy. While having surgery in your stomach-area and the following scar tissue could make conceiving a baby more difficult, there is no reason you should not be able to get pregnant and carry that baby to term. (You will need to discuss with your surgeon the best option as far as vaginal or c-section birth.)

How often do I have to empty it? It really depends on the type of ostomy. For an ileostomy, you will likely need to empty around 5-8 times per day. If you have a colostomy, especially one that’s continent, you may only need to once per day.

How often do I have to change the bag? Again, this is going to be very different for different people. Most people get between 3-7 days on each bag, but there are some who need to change more frequently. Be sure to try different bag brands and figure out what works best for you.

How big is the bag? The bags do vary in size somewhat, by on average, they are approximately 8-inches long and 6-inches wide. They do not stick very far off of the body. The bags can be folded or rolled up, too, making them a little shorter. There are also smaller bag options, however, these need to be emptied much more often. You also can get a small closed-ended pouch that will need to be changed regularly.

Will the bag be visible to others? Not if you don’t want it to be. It hides easily under most clothes. As someone with an ostomy, you will likely be hyper-aware of it being there and feel like everyone can see it, but in my experience, no one ever notices it.

Can I still wear the same clothes? Absolutely! I have said before that I have not thrown own one article of clothing since getting my ostomy and that’s the truth. You can still wear whatever you want, but you may consider an additional accessory such as a maternity band to give you more support. (Read: Out of the Bag: What to wear with an ostomy & No, I’m not pregnant)

Can I get the bag wet? Yes, you can feel free to shower, bathe and swim with your ostomy bag. Even prolonged time in the water will not usually cause the bag to peel away from the skin. But it is a good idea to dry it well afterwards. (Read: Out of the Bag: Showering & bathing)

What can I eat with an ostomy? This is going to be dependent on the person, but for the most part, you can eat whatever you want. The bigger issue is just paying attention to what you eat, limiting the amounts of certain foods (such as nuts, seeds, leafy greens, raw vegetables, beans) and being sure to chew your food very well. Also drink lots of water! (Read: Watching what I eat & Hydration is cool)

What about blockages? Unfortunately, blockages are likely to happen at one point or another. The tell-tale signs are nausea, pain in the stomach and watery output. Some at-home remedies include drinking lots of water, maybe even using a little laxative (But be careful with this! Taking too much can lead to even bigger problems! Talk to your doctor.), taking a warm bath, massaging your stomach or putting a heating pad on it. If it gets too bad, you do need to consider going to the emergency room to be checked out. (Read: My first major blockage)

Will getting an ostomy change my life? Yes and no. Yes, it does change the way you operate on a daily basis. Yes, you will have to take it into consideration in many of the decisions you make. But no, you will not have to drastically change your life. No, your life is not over. You can still do all of the things you want to do and be whomever you want to be. And finally, yes, living with an ostomy has the potential to change your life for the better and to give you back some of what was taken away.

Is there anything I missed? Any questions to add or answers to expand? Submit them in the comments below!