Learn about ostomies in 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:
Where did you go for information about ostomies after surgery?
If you could give someone who is new to having a stoma one piece of advice what would it be?
Could you tell us a little bit about what you eat and how you stay hydrated?
What is the biggest challenge or struggle you’ve had to overcome with your ostomy?
Where did you go for information about ostomies after surgery?
Eric: I typically go where everybody seems to go and that’s the Internet, but you know I was fortunate enough actually to be sent home before my surgery with a welcoming package of sorts and that included some information about how to live with an ostomy, just basic lifestyle tips – it came with a DVD actually. It also came with an appliance and I thought that including the appliance was a really great idea because before surgery it allowed me to try it on and see how things worked. I think it really lowered some of my stress about what it would be like having an ostomy. But as far as the information on you know day to day things, I hit You Tube, I hit blogs and I also hit up some other online resources provided by a lot of the manufacturers, like Coloplast Hollister, Convatac, they all had some kind of information there that you know helps you to get started as an ostomate.
Bret: Since I had my surgery some 30 some years ago, most of the information that I received about ostomies after surgery was from my nurse and also from the support group I attended and that was really it. The Internet was barely in existence at the time so it was really a struggle to go find other folks to ask questions about it. It came down to about a dozen folks that I met and that’s where I got the majority of my information.
If you could give someone who is new to having a stoma one piece of advice what would it be?
Eric: It would have to be attitude. You have to come into this with a positive attitude and the reason why I say that is because if you’re having issues with your stoma or your skin or anything like that you can either be defeated about it and that really doesn’t help or you could be positive about it and find solutions and find ways to persevere. And I think that that’s extremely important to learn early on and you know when I had nurses coming in after my surgery a lot of them were saying they have patients that just absolutely couldn’t accept their ostomy and that to me that’s an extremely sad situation because they’re gonna have a much harder time going through the rest of their life with their ostomy if they can’t just get through that.
Bret: I think echoing what everyone else has been saying I like to take it from a different perspective. One piece of advice is: don’t be afraid to ask for help and keep in mind that you know your body really well. If something doesn’t seem right, feel right, smell right, as is going to happen, raise your hand and ask for some help and don’t be afraid to do so. There are tons of resources out there to help and don’t think that you have to do it all by yourself.
Laura: To that point, very quickly: I was experiencing some really excruciating pain, but I didn’t have a fever, I didn’t have any symptoms and so my surgeon would not see me. So I went to my general practitioner and it turned out that I had a large inclusion the size of a grapefruit inside of me, but I knew something wasn’t right, but no one wanted to see me because I didn’t have a fever. So absolutely you know your body best so just pay attention to it and seek help when you feel you need it.
Bret: I’m actually looking at my notes that I had ready and my notes said be positive like Eric said so I’ll try to adjust that quickly, but I think being positive is a big thing especially right before the surgery. If you have a negative attitude going into the surgery and then you wake up with an ostomy, it’s going to be hard to recover from that. It‘s going to be hard to recover physically as well. So I think being positive is really important. I would also say network, similar to what Bret said. Usually people who have been through so much and had health conditions or accidents that caused them to get an ostomy, you know, they’re willing to help, they have a good attitude and they’re willing to bounce ideas and thoughts off of each other. So don’t hesitate to reach out. There are a lot of forums on social media, a lot of doctors that will help you, a lot of advocates like us who will always reply to an e-mail or tweet or any way you reach out to us. So if something’s wrong, if you have a fear or if you just have a thought that you want to ask about: reach out, network with the people that you trust that are good resources and just know that everything is going to be okay because you have people to help around you.
Nicole is a Wound, Ostomy, Continence Nurse (WOCN) and she asks what advice do you have for an ostomy nurse. She loves her job and she just wants to make sure she covers all her bases. So what advice do any of you have for an ostomy nurse?
Brian: I guess I’ll jump in there. I had an actual bad experience with my first ostomy nurse who didn’t know how to properly put an ostomy bag on. She took the adhesive off the outer part of the wafer, but didn’t take the adhesive off the inner part of the wafer, so I think it’s very important because ostomy patients are not something you see every single day. Just be very aware and educated on the effects of ostomy whether it be, you know, a problem with the bag, the way to close, you know, once you get involved in the ostomy community I feel like a lot of ostomates have their way of doing things and they kind of like to stick to that, whether it be the way a bag closes, whether it be the way the bag adheres, whether it be extra adhesives or different products that they use so I think it’s very important for someone who is going to be a caregiver or helping somebody out with an ostomy nurse know the products and be able to help them through that issue of finding the best product for them.
Laura: Absolutely. And I would just also like to add that for people who don’t go online to find support, sometimes their WOCN is the only person they talk to who knows what an ostomy is, so just my best advice for an ostomy nurse, what my ideal ostomy nurse would do is to say: I am open to any questions, lifestyle or otherwise, so if you have any questions about intimacy, exercise, anything. Since a WOCN is sometimes the only person that this ostomate talks to about their life with an ostomy, just be open to questions and good communication.
Could you tell us a little bit about what you eat and how you stay hydrated?
Eric: Yes. So my web site is called Vegan Ostomy and it’s called that for a reason. It’s because I’ve been vegan now for over 15 years and what that means is I eat an entirely plant-based diet. So that doesn’t include meat, eggs, dairy, anything like that. So my diet now, post-surgery, has been a lot of whole foods so beans, greens, fruits, vegetables, that sort of thing. I don’t typically eat processed foods much. On occasion I will, but I don’t tend to eat that sort of thing. For snacks I’ll have fruit rather than cookies so that’s just how I tend to eat. Now I always have water with me, but I do put some electrolytes in there whether it’s pre-mixed powder or just some salt or something like that, but I will add some electrolytes to that and I’ll drink that throughout the day. I often flavor it with either apple cider vinegar or lemon juice and that gets me to drink a lot more of it, but for the most part I don’t go crazy with drinking fluids because a lot of what I eat tends to be very rich in water so a lot of the fruits and vegetables for example.
Laura: Right and that’s a great point also that you don’t have to just drink to become hydrated. You can eat fruits like watermelon and thing that are more rich in water.
What is the biggest challenge or struggle you’ve had to overcome with your ostomy?
Bret: Everybody is at a different stage in their journey with an ostomy. And I think the biggest challenge and struggle I had to overcome was just figuring out who I was with this ostomy. I instantly felt better. I had a bit of a tough recovery after my surgery, but I had to figure out who I was again with this ostomy. Today it’s a lot more out in the open, there’s a lot more places to go for help. There are a lot more people to talk to about it and there are folks like everyone on the call today that are providing a lot more inspiration and there’s lots more opportunities to get your story out there and be an inspiration to others. But 30 years ago when I had the surgery that really wasn’t the case and for me the biggest challenge was accepting my ostomy, figuring how to make it work with my life and getting through high school and college and getting married, starting a job and doing all those things. It was a very impactful time of my life and I think that it had a profound impact on my life. I don’t think I realized what a big challenge or struggle it was until I started getting back involved with some teenagers and seeing some of the struggles they’re going through with it, but I think recovering through those teen years and just setting myself up for a successful life was the biggest challenge I faced.
I had emergency ostomy surgery last march. I have a peristomal hernia the size of a breast. Is that normal?|I had emergency ostomy surgery last march. I have a peristomal hernia the size of a breast. Is that normal?
I drink a glass of ear juice while I’m cooking dinner. About 45 – 60 minutes after I’ve eaten my bag is full and stays empty till the next dinner time. Much quicker than irrigation.