This article is one in a series that make up the transcript of our OstomyLife Roundtable Discussion Webinar. Our webinar was moderated by Laura Cox, Shield HealthCare’s Ostomy Lifestyle Specialist and the guests were: Eric Polsinelli, of Vegan Ostomy, Brian Greenberg, of The Intense Intestines Foundation and Bret Cromer, of the United Ostomy Association of America and Youth Rally. You can read more about their involvement in the ostomy community by checking out their sites or by reading our webinar article here. You can also head here to check out our video recording of the webinar and find the other transcripts from the discussion.
Click on one of the below questions to be taken directly to the answers given:
Thoughts/feelings when you first found out that you needed an ostomy.
How did you overcome the fear and unknowns about life with an ostomy?
How was your recovery after surgery?
Thoughts/feelings when you first found out that you needed an ostomy:
Brian: I’d say when I first learned that I was going to have an ostomy I was a little bit scared because I feel that’s your initial reaction, but it was also three years of battling Crohn’s disease pretty badly after I came out of my first remission. So I was somewhat prepared for it because going to the bathroom 30 plus times a day was exhausting and painful not only from the Crohn’s disease, but also just from wiping. So when my doctor finally said that this was pretty much the only option to go from here it was almost a relief. I mean, yes, I was scared about what’s ahead, you know, how would I learn how to do everything that you need to do with an ostomy, changing the pouch, going to the bathroom, etc., what would life be, you know, with relationships, with activities I do, but I also felt some relief that I knew that the end of my Crohn’s disease for a little while and all the pain that I was going through would be getting out of my life for the future a little bit.
Eric: When I found out that I knew an ostomy was in my future, I was actually pretty devastated. I didn’t expect that at the time even though my disease was quite severe. I had actually been part of a clinical trial, so when I got this news it was after about six months of being on these drugs and I figured, you know, it couldn’t possibly be worse, but it was. And when my doctor said hey, I think you’re a candidate for surgery, I took it really hard actually because I felt as if surgery was a failure. But in hindsight now I should have actually been really excited. But needless to say I wasn’t relieved at the time, but I’m certainly glad that I went through with it.
How did you overcome the fear and unknowns about life with an ostomy?
Bret: My mother coordinated and choreographed me, kicking and screaming, to an ostomy support group that was full of old people. Little did I know at the time that I was inspiring them, but I got the chance to meet some older folks that were going through the same thing that I was going through after my surgery. I was really reliant on the help of my friends and my family. My mother is very supportive so I was very lucky that I was 16 and had a pretty good support group around me full of positivity, full of nothing other than “You’re going to be a 16-year-old kid with a pouch and that’s all that you need to know and let’s just go on and do it.” So, thanks to my mom. The folks in the group, whether I knew it at the time or not, had a real profound impact on really taking the fear out of it. They were so full of life, moving on with what they were doing. I was so sick they could have put a bag over my head for all I cared. There were a lot of unknowns, but there wasn’t a lot of fear just because I was so sick I just wanted to get better. So this was the next natural step and it happened really fast. I wasn’t on a lot of clinical trials and drugs, I was a really nasty dose of prednisone and for me the fear went away because I was gonna feel better. The unknown was something I was going to tackle with the goods and with my pack.
Brian: Once I knew it was going to happen there were a lot of questions that I had because I’m a very active person and my biggest fear was how would I continue to climb, how would I continue to hike, how would I continue to ride my motorcycle or my bike, and do all those things that I still wanted to do? Was it going to be the end of my life with an ostomy? Would I be able to do these things still? And I was going through the Internet and as we all know when you go to certain sites it’s kind of – the stories you hear are a lot of the negative ones. And I found one positive story that really connected with me in particular by a guy named Rob Hill, who climbed the seven summits of the world with an ostomy and Crohn’s disease. And about three days before my surgery I was crying and I remember I found Rob’s video on YouTube and all of a sudden I realized: (a) I would be able to do a lot with my ostomy and (b) I wasn’t alone. There were people out there just like me that were doing a lot of things with Crohn’s disease, ulcerative colitis and ostomies as well. So all of a sudden the tears stopped and, like I said earlier, I was a little bit relieved that an ostomy was in my future because it allowed me to do all these things. With regards to the fears that I would have from day to day life, I think the biggest thing that an ostomate needs to do is take a deep breath and realize that everything is going to be okay and once you start to live with an ostomy you’re going to learn everything you need to know to go through it on a daily, day-to-day lifestyle. It won’t affect things on a regular basis. Every once in a while you might have a leak here and there, but for the most part, 360 days a year you’re not going to have a problem and you’ll be able to do all the things that you would like to do as well. So I feel like reaching out to other ostomates knowing that I wasn’t the only one and that there were other ostomates that were extremely active helped me out quite a bit.
Laura: Absolutely. Whenever I talk to someone who is thinking about ostomy surgery or who just has gone through ostomy surgery, I always tell them to gather courage and to do things because every time that you try something and nothing goes wrong which happens quite a bit that fear kind of decreases. So every time that you go and you go out and do something you like and nothing goes wrong you kind of realize, slowly, that this is not going to change your lifestyle as significantly as maybe you thought it would.
How was your recovery after surgery?
Bret: My recovery after surgery was quite an adventure. After my first surgery I was still pretty sick. I didn’t really listen to the nurses in the hospital. I didn’t use my breathing apparatus. I got pneumonia so instead of going home about two weeks after surgery, I went home about six weeks after surgery. Once I learned the tricks of getting out of the hospital it was pretty painful for a while. It took a lot longer than I thought it would, but I think what helped me get through that recovery was the light at the end of the tunnel. We had a ski trip to go on and we were darn well determined to go on it and there were posters in my room, there were posters in my hospital room and my goal was to work with the nurses and the doctors and we didn’t have physical therapists and all these sorts of things back then, but day-by-day once I finally got home, what could I eat, how could I take care of this pouch without having to go back to the hospital every day, it really was day-by-day learning what I could do, what I couldn’t do and working towards that goal of going skiing about three months after my surgery.
Eric: My recovery was actually pretty quick. I would say that, with the exception of just a minor blip about a week after I was released from the hospital: I had an incision actually open up. But apart from that, I went from being bedbound basically to going on a hike, you know, five weeks after surgery. So my recovery was quite rapid and I don’t know if I’m a typical case or what, but that’s just how it ended up being. I think because I was so sick any kind of improvement felt like a tremendous improvement so I was determined to just make the best of how things were going. And I did have pains, with coughing and laughing, oddly enough, was still painful about a month later, but that was just very minor compared to what I was used to, so it was a pretty easy recovery.
Laura: I don’t know if there really is a typical recovery. My surgeon told me that generally there’s a three to four day hospitalization. Someone was admitted the same day as me to have the same surgery and they were out in three days and I was there for 19 – but I went septic and had other problems as well. So I don’t know if there really is a normal recovery.
How do you explain what an ostomy is to someone?
