Finding a new normal

I have been so thankful over the past couple of years to have gotten to hear from so many of you and learn about your stories and your challenges and your triumphs. My goal has always been to create a community where we can all share our stories and the things that we have learned during our time living with an ostomy. So I wanted to provide that place for all of us to share our personal OstoMYstory.

Brandon’s story

My softball team lost every game we played this fall, but that was never the point. Not to me, at least. Twice a week for an hour at a time, I got to feel normal again. Of course normal is relative. Ever since my surgery in April, I’ve been adjusting to life and a new normal with a permanent ileostomy and a constant reminder of my exhausting battle with Crohn’s disease. But when I was on the field, that was the last thing on my mind. In my eyes, that made our season a success.

Brandon Boatwright crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonI was diagnosed with Crohn’s in 2012 when I was 22 years old and fresh out of college. Most of my friends were starting jobs, getting married and buying houses. Meanwhile, I was alternating most of my time between my gastroenterologist’s office and the hospital. I tried to find the words to describe the way my symptoms felt to friends and family, but always thought I failed to capture the true depth of intense pain, isolation and humiliation I felt with this disease.

My tipping point came at the beginning of 2014 when I realized the biologic therapies we tried were not working. I was dependent on steroids, had lost 40 pounds and was alarmingly anemic. My GI offered two options. First, a new drug combination that would increase my risk (albeit remotely as a young adult male) of developing a rare form of leukemia that was untreatable and fatal. My second option was the surgical removal of my large intestine, and a permanent ileostomy. Which devil do you want to dance with?

I took a leave of absence from my job as a public speaking instructor at Clemson University, and at 6:30 a.m. on April 1, I was wheeled into the operating room. When I woke up around noon, I remember being moved to my dank little hospital room, watching a basketball game on TV, holding my mom’s hand and then falling asleep. I never looked at my stomach.

That came on day two in the hospital when I finally mustered the courage to peek under my linens. Tubes and cords and finally, it – my ostomy. I figured we might as well get to know each other considering we’d be living together for the foreseeable future. Our courtship wasn’t easy. It took two weeks to get out of the hospital, and even after that it seemed like we couldn’t get on the same page.

I had one night where I let myself completely break down and feel sorry for what had happened. But any more than that, I felt, was unnecessary. It took a few weeks before I realized just how much Crohn’s had taken from me, and what this surgery was giving back.

Eventually I started walking around the neighborhood with my mom and dad. My sister and brother-in-law would bring by my baby nephew to play with. My pastor would stop by to pray with me. Friends and family members sent friendly cards, texts, and visited. I even began to eat things that I never would have been able to because my evil gut would have destroyed my ability to enjoy them.

One evening I was watching the news after dinner, and heard an interview with a survivor from the Boston marathon bombings. She had lost a leg as a result of the attack, but never her optimism. She said, “Our scars are just proof that we are stronger than what prompted them.” That helped me realize that I was and am stronger than Crohn’s. I’m alive because of the surgery I elected to have. And not just alive, but happy. No longer dealing with the pain and anguish associated with Crohn’s, or the fear that I would never be normal again. But I am. We are. Normal.

The Stoic philosopher Seneca once said, “As long as you live, keep learning how to live.” Having an ostomy doesn’t mean I’ve entered some alien state of being. It quite simply boils down to learning how to live out a new normal. I’m alive. And I can play softball.

You can follow Brandon on Twitter @brandoncb10.

#OstoMYstory

The first time I saw my stoma

Guest Post for WOCN Society Blog

I was very honored to be asked by the WOCN (Wound Ostomy Continence Nurses) Society to write a guest post for their blog. These nurses are a great resource for anyone going through surgery to get an ostomy and I am so appreciative of all they do. This blog reflects on what I was feeling right after my surgery and what I hope others will understand about what that experience is like.

It’s a very strange feeling to wake up after a major surgery and to find something foreign attached to your body. And I knew it was going to be there. (I can’t imagine what it would be like for those who went into emergency surgery and did not know what they were going to wake up with.) But I have to admit, I was pretty good at ignoring the bag that was hanging off of my stomach for a few days, before it was active and when the floor nurses were taking care of emptying it.

But then came the day when the WOC nurses came to see me.

Prior to my surgery, I had been given a lot of information about the surgery and about ostomies and I was also given an ostomy bag to take home. And sure, I held it up to my stomach to see where it would hang, but I didn’t actually stick it onto myself or practice cutting the opening. So when the WOC nurses came to see me, it was all new.

stephanie hughes stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonI remember so well that moment they pulled off the bag and there it was: my stoma. It was the first time I had really seen it, other than a few glances at this red circle inside my new bag. I could see how big it was and how far it stuck out of my stomach and how… scary it was. I think I held my breath for the first minute, but I kept it together while the nurses were there, trying to focus on asking them any questions that I had. My ostomy was pretty active during this first changing, so I just dove right into some of the difficulties with managing one. The WOC nurses were great and showed me how to clean the area and about some of the accessories that would help me take care of it.

But once they had gone, I broke down. I sat there with my husband standing next to me and just cried. It was the first moment of feeling like “what have I done?” and being truly scared of how this would impact the rest of my life. Even as I’m writing this, I feel the tears coming to my eyes because I remember so well that feeling of loss and of helplessness in that moment. But I don’t think the nurses realized exactly how I was feeling. I’ve gotten pretty good at hiding pain and emotions over the years.

And I had great nurses all along the way. The nurse I had before my surgery spent a lot of time with me and walked me through the process of picking my stoma spot. I previously thought that my stoma would be low, as in below my pant line. She took the time to explain to me about placement and why it matters. She helped me to understand why the spot we picked was the best spot. And I still think it is.

stephanie hughes hospital surgery colectomy stolen colon ostomy blogAfter the surgery, I had two nurses who came to see me and help me with that first bag change. They came back a day or two later and let me change it so I could get used to doing it, but they were there to help me figure it out and remember all of the steps. They were kind and open to any questions I had about the bag itself and about living with it.

Even after going home, during one of my first bag changes I saw some blood, which of course freaked me out. I called the WOCN department and someone told me that it was entirely normal to see some blood, but if it got worse to come back to see them. She helped alleviate my fears and that was actually the only call I ended up making.

I know I’m not the only one who has felt lost coming out of surgery. And that’s what I want others to understand. When someone goes through this surgery where a part of them is taken away, it’s almost like a death in the family. You immediately feel like your life is changed and there’s no going back to the way it was. A piece of you is forever gone. That’s a hard reality to come to terms with.

And that’s what I think is so important for the people taking care of these individuals to understand. Even if the patient is very prepared for this surgery and even excited about going through with it, nothing can prepare you for what it’s like immediately afterwards, when you’re in a lot of pain and on a lot of medications and there’s this squishy red thing hanging out of your stomach. So understand that they are likely having a difficult time adjusting.

Keep telling these people know they are not alone. There is a great support group out there, both in-person and online. Reinforce that there are lots of bag choices and they don’t have to stare through a clear window at their poop for the rest of their lives if they don’t want to. Keep helping them discover all of the great places to look for tips and tricks on living with an ostomy.

But mostly, just keep taking the time. Take the time to help them feel comfortable and try to understand what they are dealing with. Take the time to talk with them about how placement of the stoma may affect their experience. Take the time to make them feel like they are the most important person in the world. This may be just another day for you, but for us, it’s the day that changes everything.

Out of the Bag: Passing gas with an ostomy

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon

I don’t fart. That’s actually one of the perks of having an ostomy is that you no longer have to deal with the embarrassment of accidentally letting one slip. However, like everyone else who still has a colon and a normal digestive tract, we still have to let out the gas at some point. And it’s a bit of a strange experience because you don’t feel it coming. You don’t know it’s there until it, well… until it comes out. And just like non-colonless people, it’s not always quiet.

So overall, when you’re dealing with gas in your ostomy, there are two main things you have to look out for:

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 out of the bag passing gas fartingLetting the bag get too full of air. This mostly occurs at night. For me, I usually wake up in the morning with a bag full of air (and other things…). On occasion, it could get to the point where it causes a problem, such as causing a leak or even pulling the bag off of you. This is why it’s important to watch what you eat prior to bed. So you should be cautious beans, broccoli, starchy breads and pastas, and especially soft drinks. All of these can cause gas buildup and could potentially cause an issue for you overnight. Also, I try to refrain from eating too close to bedtime. My deadline I give myself is 1 1/2 hours before bedtime, but really that’s still cutting it close. I truly prefer to be finished eating more like 2 1/2 hours before heading to bed, with perhaps a small snack shortly beforehand, because this can get your digestive tract moving and you can actually go ahead and get some of it emptied out before bed.

Most bags have a filter, which does help some with letting the gas out, but it’s pretty minimal help. One thing you can try to help with the gas buildup is “burping” the bag, or basically opening up the end of the bag and letting out some of the gas. However, you have to be very careful when doing this or you could wind up with a big mess on your hands. (Yes, unfortunately, I have dealt with this before.) Try to open only a corner and you don’t want to do this when the bag is full of lots of other stuff. Also, you won’t want to do this in any sort of public setting because you will be releasing a pretty potent cloud of gas that you can only blame on the dog so many times.

Your stoma making farting noises. I fully realize this is a major concern for people who have an ostomy or are considering getting one. But hopefully I can alleviate your fears by saying that, in my experience, nearly all of the time it is quiet. Most often the bag just silently fills up with air. You won’t feel it coming out, you’ll just notice the bag inflating. But there is that rare occasion where some noise will sneak out. The hardest part is that it completely sneaks up on you. You don’t have any warning or any chance to hold it in. It’s just suddenly there.

However, it doesn’t quite sound like a normal fart. It’s a very difficult noise to describe, but it’s not extremely loud usually. The times that is has happened, I just place my hand over my stoma, because sometimes it’ll continue to make noise, but the pressure from your will keep it quiet. If somebody hears, I usually just say something like, “Sorry, my stomach,” and nobody has every given it a second glance. And I will say that out of the 2 1/2 years that I’ve been living with an ostomy, this has only happened a handful of times, so don’t let it worry you too much.

There are, however, two instances (that I have found) where it does happen more frequently. The first was right after my surgery. For the first few weeks, as my body was adjusting to the new ostomy, I had a lot more gas then I have now. But even then, it was mostly just the bag filling up and not that it was making noise. I had to be careful overnight because it did cause a leak several times. If you are worried about it, it might be worthwhile to set an alarm for the middle of the night to check on it and empty the bag if needed. I never did that and was fine for the most part, but it is an option if this is something that really concerns you. And after a few weeks, your insides will settle down and it won’t happen as often.

The other instance was after my ileoscopy. In this procedure they pump in a lot of air, so there was a LOT of noise afterwards. I mean, it was pretty bad, so I would just be prepared for that to happen. (Read: Don’t bring anyone you’d be embarrassed for that to happen in front of with you.)

Basically, I think the best advice is just to have a sense of humor about it. I mean, let’s be honest, nobody wants to fart in public, but it happens. And you just have to learn to roll with it and to laugh it off, if need be. The plus side is that it will happen to you much less often than your colon-filled friends (especially in the bathroom).

Have you had any funny and/or embarrassing instances of passing gas? Any tips or tricks to dealing with the noise? What about dealing with a bag full of hot air?