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:
How did getting an ostomy change your life?
What was the biggest adjustment you had to make after your surgery?
How did getting an ostomy change your life?
Eric: It completely changed my life for the better. And I think a lot of people have to remember that where I came from was severe Crohn’s disease. So this wasn’t like emergency surgery that just came out of the blue. This was essentially years of a progressive disease and I went into the hospital in a wheelchair. I couldn’t move around very well. I was in a lot of pain all over my body and the moment I got out of surgery I kind of felt all that pain was gone and from then on I’ve been doing a lot of things that I hadn’t been able to do before I got sick. But I’ve also been able to do a lot more – spending more time with my family, getting to go out and do things that I wouldn’t have necessarily been able to do or hadn’t done before that. So it really changed my life completely in a very positive way.
Bret: To say that it had a profound impact on my life would be an understatement. It allowed me to get my life back, it allowed me to go back and really do everything that I was doing before. I was so sick with Crohn’s it was where I couldn’t do anything – I was in the middle of high school and I was on prednisone. Surgery really allowed me to get my life back, without the fear of everybody in the world knowing that I live with a pooch, poop in a plastic bag. I think it really opened up my perspective to or if I can do this and graduate high school and graduate college and get married with all these things that some folks let hold them back, I can really do anything that I put my mind to. And that wasn’t how I lived life before I had my ostomy. I think it really had an impact on me from a physio/social side as well of opening up and talking about these things. I wasn’t really that sort of person before and it allowed me to really accept a lot of new folks into my life that were struggling and sit down and talk to them about my story. Not that I can put myself in their shoes, but I can certainly sit and listen and empathize with them and give them some inspiration, like, “Hey if this kid can do it then I can do it too,” and it’s really became a moniker for how I lived my life after that.
Laura: I think that going through any sort of painful experience or any sort of body altering experience, you really do have this empathy component that maybe you did have before, but it just grows that empathy component. So it’s much easier to relate to people in pain in any situation.
What was the biggest adjustment you had to make after your surgery?
Brian: This is a great question because there are a lot of adjustments that I think ostomates do have to make with regards to sleeping and lifestyle, at least a little bit. I think the biggest adjustment I had to make was a mental adjustment. I was 28 and single when I got my ostomy. I had no idea how it was going to affect various areas of my lifestyle and I think the biggest thing that I did was just accept it. And that was the biggest adjustment because even though I was relieved to get it, there were still fears of how I was going to interact with friends, how they were going to interact with me, how was it going to be when I wanted to go out with them, etc. And every time I went to the bathroom for a little while I’d look down and I’d feel a little bit upset if there was this pouch or bag on my right hip. But then, after a little while, the adjustment of mentally saying, “Okay, that it’s there and it’s allowing me to do all these things,” put me in a positive place, put me in a much better mindset and making that adjustment allowed me to go out with my friends more, allowed me to be the person I am without anxiety or worry. So I think the biggest adjustment I made was mentally being okay with the ostomy and being prepared to go through whatever it threw my way.
Eric: For me the biggest adjustment had to be just returning back to family life, finding my place in the family again. I went through my illness with two kids and all of a sudden I was in a position where I could return to being a dad and being a husband. It was actually very challenging because I didn’t know how to get back into that so there was an adjustment period primarily focusing on that. That’s really not information that you will find or you’re not prepared for because it’s not something like, “Here’s how you do it, A, B, C.” It‘s really more just that mental adjustment getting back into the family after having been taken out really because of illness for so long.
Laura: I think just adjusting from a mindset of, “I have a chronic illness and I’m sick and it stops me from doing things and I have to accept it,” to changing and saying, “Now my chronic illness is in check and I can be a normal person.” It was a very interesting shift accepting that I had a chronic illness that was incurable and that I was just going to be sick all the time to feeling well. It was actually quite a challenge for me as well going from sick to well for some reason.
What are your hobbies post-surgery and what are you able to do with your ostomy that you weren’t able to do before surgery?
Brian: Before surgery I’ll be honest I wasn’t able to do much. My Crohn’s disease set in pretty severely the last two years after my third resection. I only had my descending colon left and when it was eventually taken out before my ostomy surgery my doctor told me it was like dried leather. So I was going to the bathroom 30 times a day. I was having accidents. I pretty much couldn’t leave the house for the last year before my surgery when I was 27. I wasn’t able to do anything. A lot of people told me that life with the ostomy after was going to be hard and that there’s going to be a lot of things that I wouldn’t be able to do and I just didn’t want to accept that. So I set out to do everything that I could. I always had a goal in mind of doing a triathlon and I always thought that if I never had Crohn’s disease or if I didn’t have an ostomy I would truly be a triathlete and be doing those things on a regular basis so this past year I actually took on completing a 70.3 half-Ironman and some people thought I was crazy, but I really wanted to show myself and show others with IBD and ostomies that it can still be done. So I would say my list of hobbies goes on and on. I like to climb. I like to hike. I like to swim, bike and run now. I like to ride my motorcycle. I like to go on long walks. I like to do everything I can to stay active because as IBD patients and ostomy patients we spend a lot of time inside when our disease flares up or when our ostomy isn’t acting properly so when I am able I like to do as much as possible. So my ostomy has really allowed me to do so many different things and allowed me to even pick up hobbies that I wasn’t able to do before my surgery. So I am extremely grateful for my ostomy. I think it’s changed my life for the better and I love it in every single way.
Laura: That’s amazing to hear and that’s also a great message for people who are just out of ostomy surgery or just thinking about the fear of not being able to continue what they want to do, but really it did enable you to.
What is your biggest accomplishment with your ostomy and can you tell us a little bit about the experience?
Brian: I would say my biggest accomplishment was actually recently on August 30 when I completed a 70.3 half-Iron Man. It was months and months of training. I literally started training in March of 2015 and then finally crossed the finish line in August of 2015 and I wasn’t sure if I was going to be able to do it, especially with the swimming part because you swim, bike, run so the ostomy gets wet, then you get to the first transition area and I wasn’t sure going through all the training what it would be like getting through that first transition area. Would my ostomy be okay after swimming for 45 minutes through the ocean? Would it hold up through the bike ride? And when I get to the run would it be okay? And I didn’t have any problems that entire day. I got out of the water; I was able to have a little transition area next to a bathroom which the triathlon association set me up with. I checked my ostomy bag. It was still on perfectly well. I changed into my bike suit. I biked 56 miles and then I went to the same transition area, checked my ostomy again, it was fine and once I knew that the swim and bike were done I knew the ostomy would be pretty good for the run and I remember the last mile or so of the race just starting to cry. I had a proctectomy in August of 2014 and I had some complications after; they had to open up the wound because of an infection and the wound had to heal from inside out and I was literally pretty much in a bed for more than three months while I had a visiting nurse service come to my house every single day to pack the wound and take care of it. And I was running down the last mile and I realized that roughly 365 days ago I couldn’t even leave the bed and now I just completed the 70.3 half-Iron Man. I was crossing the finishing line. My ostomy was absolutely perfect. It held up the entire day and I remember coming down the chute that you see on marathons and You Tube videos and everything and the guys started screaming my name and there were hundreds of people that knew my story from an interview I did the day before and it was just – it was an incredible accomplishment I think. My girlfriend was there and my family was there and the ostomy wasn’t a problem and I remember, like I said, crossing the finish line crying and people were asking, “Why were you crying?” And I said because a year ago I was in bed. I couldn’t do anything and now I did this. So I would say that is my biggest accomplishment with the ostomy to-date, but I say to-date because I’m always going to try new things; I’m always going to push myself. I want to see what I can do with an ostomy and live my life to the fullest.
Laura: That’s incredible and let me just tell you there are three people in this room with me and we are all tearing up. You are an incredible example of strength and one of the things that I always tell people and one of the things that’s gotten me through a lot, is if you can’t change your situation, change your attitude and you are just such a prime example of that in so many ways. So that’s very touching.
Can you tell me of any medication or pills I can take that eliminate or lessen odor? It seems to be worse in the mornings. I am going on vacation with friends and it can be very embarrassing.
