Transcription:
Ostomy Care – We can Help!

Melanie Cole (Host): If you have been diagnosed with a cancer of the pelvic region, inflammatory bowel disease, or other condition that requires you undergo a procedure that results in an ostomy, you might feel that this is the end of life as you knew it. However, with some extra care and some help from your healthcare providers, you can lead a full and healthy life even with an ostomy. My guest today, is Patty Cimino. She’s a Certified Ostomy Nurse with Aspirus Health System. Welcome to the show, Patty. What types of conditions might require the need for an ostomy?

Patty Cimino (Guest): I would see common reasons why we see ostomies, at least in our region, people might have diverticulitis, and then they will have a perforation of their intestine, and then they are in emergency surgery and would have a temporary ostomy at that time until their insides heal up.

Melanie: Making that decision – and you and I spoke a little bit about this off the air, but what would you tell people whose physicians – whose healthcare providers say to them, “This will change your life.” What do you tell them about making this big decision?

Patty: Well, we try to be really honest about what goes on when you have an ostomy, or you wear a pouch on your side. It’s a different way to go to the bathroom, so that’s a change. People certainly mourn the loss of being able to have a bowel movement the regular way or maybe urinate the regular way, so there’s getting over that part of it. Often times, I think people think that everything has to stop – things they enjoy. I’m thinking of things like going out, going to church, going to the movies. If you’re an active person -- riding your bike or mountain climbing or any of those kinds of things -- that all doesn’t have to stop just because you have an ostomy.

Folks who have Crohn’s disease, often times will find that having that ostomy will actually liberate them from having to stay near a bathroom all the time because they’re able to manage their pouch in a way – out in the field, or in the woods, or even in the community there’s ways and means that we talk about at our support group to help patients and their family members understand how to manage that after they’ve had their surgery.

Melanie: Speak about the surgery and what they can expect just after the surgery as far as life changes and taking care of that stoma?

Patty: In the hospital, things are always a little strange and different, but after you’ve had abdominal surgery, a lot of times you’ll wake up with a lot of gas and bloating, and the doctor will advance your diet slowly. In our facility, what we do is, my colleagues and I come in, and we do teaching with the patient and family member or support person. You have the abdominal pain and discomfort that you would have with any surgery, but after you go home, then you have to deal with your pouch. You have to be able to empty it, change the pouch system – that’s another skill that you need to master. We often include family members with this, or loved ones so that the patient has another person hearing the same instructions.

Visiting nurses are very key in patient success as well. We have found that follow-up with a Certified Ostomy Nurse has made a big difference for a lot of our patients in the community. We have found that they have less problems with complications or skin irritation or something along that line, and do better overall with close follow-up.

Melanie: And then it’s time to go home, and this is the scary part for many people. You mentioned support groups, but what is life like for them? There are so many questions that I imagine that people have. Who should they tell? Is this something that you tell people? Speak about some of those kinds of things.

Patty: Okay, let’s see, who should you tell? That really is up to you. It’s a very private thing, so I wouldn’t tell everyone in my first sentence, “Hi, I’m Patty, and I have an ostomy.” That’s generally saved for times of -- I guess disclosure would happen if you have a relationship with someone you want to move into a more intimate type of situation. Now, there are some people that choose to disclose that to their friends, so they’re aware. If you’re going to a card game or something, and you say, “Oh, I’ve got to get up and use the restroom,” or whatever, “I’ll be right back.” That type of thing is certainly up to the patient and oftentimes family members and friends are very understanding of that.

Learning to take care of the pouch is certainly a big thing. Many are saying or asking – as far as patients and family – “How often do I have to change this whole apparatus?” You empty it when you need to, but you change the whole pouch system, and you also hear that called an appliance. You change the appliance twice a week, but as time goes on and that ostomy has had a chance to heal it will shrink over a fair amount of time, up to eight weeks. And then, at that point, you can start extending how long you can actually leave that particular pouch on. There are nuances and tricks of the trade, skin protection, things along that line that the patient and family members need to learn how to do.

Melanie: Can they take showers and swim?

Patty: Oh, absolutely. That’s a great question. I get that one a lot, actually. Showering isn’t an issue. The companies make these products that are resistant to water, and you can actually use waterproof tape around the edges of the barrier – the piece that goes to the skin – so you can shower and swim without difficulty.

Melanie: Does it show if you’re in a bathing suit?

Patty: Well, that’s a really good question, too in that that’s a major concern for everyone. It all depends on what type of suit you wear, of course. We’re fortunate because industry partners are making garments that people can wear for swimming that actually conceal the pouch system. You might wear a two-piece system, but you can wear a swimming garment over the top of it, and it keeps its lower profile, so it’s not as noticeable. We’re really fortunate that we have industry partners that are willing to develop those kinds of things for patients.

Melanie: And what about sexual activity, Patty?

Patty: Yes, that doesn’t stop either, just because you’re wearing a pouch. It all depends on what type of surgery, whether or not the patient – a gentleman, for example, would still be able to have an erection. That is a concern for people who have bladder surgery, for example, because all of those nerves are together. For the colon surgeries, generally, that’s not an issue. There may be some swelling in the area that at first, that might cause a difficulty that way for a gentleman, but later on, generally, that resolves.

I think, for the most part, the thing about sex and intimacy with an ostomy is getting over it in your head – that you’re still lovable and that you’re still attractive to your mate. That’s a big thing, and we do talk about that, as well. Certainly, you want pouch concealment during intimate times. There’s – again, they’ve got garments now that are lacey and pretty for ladies, and guys can wear something similar to a cummerbund or some kind of band around their abdomen, so they don’t feel like the pouch is disturbing you. There are lots of ways to manage that kind of thing.

Melanie: And what about physical activity? If you’re somebody who likes to play baseball or go running or any of those things, can you resume those?

Patty: You bet you can. That’s another really good question. You’ve got really great questions, Melanie, and I really appreciate that because this comes up in our support group all of the time. “Can I go back to logging?” And we have to say, “Okay, yeah, you can still log trees, but we’re going to have to find a strategy to protect your stoma.” That’s kind of an extreme example, but if you’re a bike rider, if you go out and you like to play tennis, or maybe you’re a walker or a runner, all of that can still happen. It’s a matter of – if you’ve got a contact sport, you’re going to have to use protection for your ostomy, but it doesn’t stop you from doing that.

Melanie: Let’s talk a little bit about food. Are there certain foods that you want ostomy patients to avoid, like really leafy vegetables or any of these kinds of things? Are there any limitations?

Patty: Well, there can be, and the population of ostomy patient that may have a limitation is the patient with an ileostomy. That’s made from the small intestine. You’ll see that a lot of times with patients with Crohn’s disease or ulcerative colitis where they have had to maybe remove the whole large intestine. Now, they have an ostomy where the diameter, once it’s healed and life goes on, is only about an inch in diameter. Certainly, the stoma can stretch and allow food to pass through, but when you have an ileostomy, you have to watch the fresh vegetable with a lot of strings in it. Often times, if you cut them up or maybe cook that vegetable before you eat it – we’re talking about cabbages, and string beans and things along that line – celery. If you maybe don’t tend to chew your food well, that can be a problem. If you gobble your grapes or don’t chew up your olives, that can be a problem. Sometimes casings on natural wieners or bratwurst, that can be an issue, too.

It’s interesting because we talk about this at the support group and many patients will say, “Oh, I just eat whatever.” If they’ve had a problem with a particular food item, often times they’ll eat less of it or maybe avoid it altogether. I encourage people just to introduce one new food at a time to just see how it’s tolerated. Patients with urostomies and colostomies really don’t have any restriction.

Melanie: Can a woman get pregnant with an ostomy?

Patty: Yes, sure can. The ostomy itself doesn’t interfere with being able to conceive, so we may have to make some adjustments in the pouch system as pregnancy goes on, but women have babies who have ostomies.

Melanie: And when would you want someone to seek some professional help? If they notice anything different on their ostomy, or if they’re going to get cramps or something? What are some red flags?

Patty: Okay, let’s start with folks with ileostomies. One of the red flags may be food-related in that they maybe have eaten something and now has caused a blockage of their stoma. Now, they’re having lots of abdominal cramping or pain; nothing’s coming out of that ostomy, and they start throwing up. That’s an emergency, and they do, at that point, need to get to the Emergency Room because of dehydration concerns, and then we would be able to relieve that impaction, as well.

If you have a different type of stoma, or actually, any stoma, if you’ve got skin breakdown underneath that barrier or you’ve got some irritation or rashes that are persistent and aren’t going away, we definitely should be seeing you. And when I say “we,” I’m talking about Certified Ostomy Nurses if you have one in your area. Skin breakdown is one, I spoke of that. Another is if you’re having problems with your pouches leaking all of the time. These devices are meant to be reliable, and if they’re leaking all of the time, then you can’t get on with your life. You become afraid to leave your home. That’s not living, and we want to help you get fitted into the proper pouch system so that you’ll be able to get back to whatever your normal is for your life.

Melanie: Wrap it up for us, Patty. You mentioned the word “your normal,” and that’s what I was alluding to in the introduction, is that it is a new normal. It’s not the same as they were before, but it is their new normal. Give your best advice for people that have to undergo an ostomy procedure, what you want them to know about living a full life even with an ostomy.

Patty: Well, I think the first thing is is that – with having an ostomy, it changes, of course, how you go to the bathroom, but you can get on with your life. You may have to certainly pack a pouch system and have it available for you if you’re going to go out and travel or be out for the day, but you have to be thinking ahead a bit, I think. Be prepared. If you have a routine, I think that helps a lot. What I mean by that is, if you find that you’re changing your pouch every three to four days and that works for you, keep that up. Often times, we give guidelines to people and what I always tell people – whatever works for you really is most important. If it is that you need to change your pouch at this interval, then do it. If you like this type of pouch system, then wear it. You’re not cornered by what my opinion is or even my colleagues, but we try to give guidelines and give information.

I had one patient tell me one time in our support group; he said, “Always be hungry.” What he meant by that was don’t settle for what you got now, always be looking to make it better. I think that’s a really neat way to look at life in general, but with ostomies, okay, I’ve worn this pouch system, and it’s kind of – I can see it through my clothes. Is there something better I could be wearing? Seek it out. If you don’t have a Certified Ostomy Nurse in your area, there’s a lot of things online you can look at. Word of mouth is big. Call a medical center in your area and find out if there’s a Certified Ostomy Nurse there or if there is an ostomy support group. You can ask your peers, “What works for you?” And then, try that and see if that’s something that you can incorporate into your life.

Melanie: What great advice, Patty. Thank you so much, for being with us today. It’s such important information for people to hear. You’re listening to Aspirus Health Talk, and for more information, you can go to Aspirus.org, that’s Aspirus.org. This is Melanie Cole. Thanks so much, for listening.