Tag Archive for: Skin Care

What can I do with a Urostomy? What can’t I do?

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Don’t let an ostomy stop you from having some summer fun

By Annemarie Finn

When I received my bladder cancer diagnosis and the treatment plan, a radical cystectomy with an ileal conduit, I was devastated. Like so many, I went through many stages: Denial, Anger, Bargaining, Sadness and Depression, and finally, Acceptance. It felt like a double whammy. It seemed like the “cure” was worse than the disease. I would be forever changed. It was hard to wrap my brain around. It is one of the reasons I decided to write about my experience. I had no idea what to expect and did not know where to turn. I saw some videos of survivors with ileal conduits but, I did not relate with the speakers. They were 20-30 years older than I was. I really did not want to envision a life as an elderly person before it was time.

I can use a public restroom without having to sit on the gross toilet!

What would my quality of life be? I was terrified that life, as I knew it was over. Would I be able to work? What activities would I be able to do? What would I never do again? I had so many questions and fears.

So, what can I do now that I have a urostomy?

Honestly, I can do everything I could do before. When you first get out of surgery, you are hardly able to walk around your room. When you go home, the end of the driveway is a monumental trek. By persevering and trying to walk more everyday, I was able to go from measuring distance in feet to measuring in miles. Today, I try to walk 5-10 miles a day! I have hiked intermediate trails in the hills of Eastern Massachusetts. I have discovered miles of trails in my hometown that I didn’t even know existed. I am probably healthier than I was before I got sick.

Can you take a bath?

People often ask if you are able to bathe with a bag. It is very nerve wracking initially to expose your stoma. They are fairly active. I call my stoma, Squirt, when he (yes, it’s a he) acts up. He does spray urine. Picture a male toddler squirting. That’s what it’s like. We have no control over it. That’s why we wear a pouch.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way.

You can wear your urostomy bag in the shower. You do not need to cover it or keep it dry. It is a good idea to dry the skin around it with a hair dryer on low when you are done. You can even take your bag off and shower without it. I am over two years out from my surgery and that is how I prefer to do things on my change day. I change my bag every 3 days. I prepare all of my materials (bag, ring, barrier, paper towels, remover spray) then remove my bag. I then take a shower. I wash the skin around the stoma with just water or soap for sensitive skin. Just make sure you do not leave behind any lotion or any residue that would affect the barrier sticking to your skin. I keep paper towels ready to catch any drips when I am done and dry the skin with a hair dryer on the cool setting. I then just put on my prepared bag. I have some skin issues and find this helps with the itching and discomfort. It feels so good not to have the bag on for a while.

What about swimming?

I am a water rat. I can be in the water for hours, literally hours. It doesn’t matter if it is in the ocean, a lake, or a pool. I have done them all. Personally, it has not affected the amount of time I am able to wear a pouch. I am still able to go 3 days. I am able to swim, kayak, and paddleboard with my urostomy. I even just float. It has not interfered with my love of water at all. Even better, I can wear a regular bathing suit. I have worn tankinis for years, and not because of my urostomy. I no longer have a toned teenage body. I don’t even have a toned 30 something body. I like 2 piece tankinis as they hide a multitude of sins. After I got my urostomy, I decided to buy regular 2 piece bathing suits. Ironically, I am much more comfortable with my new imperfect body than I ever was before. My family laughs at me because, where I was self-conscious before, I now show off my body. Maybe it was having so many strangers looking at my most intimate body parts in the hospital or maybe I am proud of my battle scars. You cannot see my bag with my bathing suit on. It’s honestly no big deal.

There are so many other things I have been able to do since my urostomy. I ride my bike. I participated virtually in the Norton Cancer Institute Bike to Beat Cancer, a 35 mile bike ride. I did it in steps but I gave myself a pass since it was only months after my surgery. I garden, do yard work, spread mulch, work, travel, you name it. As you can see, it has not limited me in any way. Because of my urostomy and thanks to my night bag, I can sleep through the night without having to get up to use the bathroom. That means I can drink up until I go to bed! I can sit through long car rides and movies with said night bag. I can use a public restroom without having to sit on the gross toilet! I can write my name in the snow!!! That is not conjecture, I actually did it. My sex life is good. I am planning a European vacation. Both of those will be the topics of future blogs.

What about what I can’t do

The list of what I can do is long. What about what I can’t do. I can’t pee like I used to. I am careful about lifting. I had a hysterectomy with my radical cystectomy so no more children for me. Since I was in my late 50s when I had my surgery, it’s not really an issue but, I am trying to be honest here. That is something to consider if you are younger. Definitely talk to your doctor if you want children. I can’t play the piano, but I couldn’t before. That’s about it.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way. You can still do what you did before and even try new things. Even better, it is a life saver. Go out and live your best life. That’s what I am doing.

 

 

Maintaining Healthy Peristomal Skin

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How to Keep the Skin Around Your Stoma Healthy

 

 

Keeping the skin around your stoma, or peristomal skin, healthy is important. You can steer clear of many complications by following these simple suggestions from:

Bath and shower tips:

  • You can bathe and shower just as you did before surgery, with your pouch on or off—the choice is up to you.
  • Because soap residue can cause your skin barrier to lift, avoid oil-based and moisturizing soaps.
  • Soap and water will not flow into the stoma and cannot damage it.

Choose a well-fitted ostomy barrier:

  • To help keep the skin around your stoma healthy, it is important that your skin barrier fits properly. Choose a well-fitting pouching system to help prevent irritating stoma contents from coming into contact with your skin.
  • Your ostomy nurse can teach you how to use a measuring guide to determine the size of your stoma and select a cut-to-fit, pre-cut ormoldable barrier.
  • Your stoma size will change up to 10 weeks after surgery, so you will need to measure it periodically.
  • Changes to the abdomen caused by pregnancy, exercise, weight gain/loss or certain medical conditions may also require a new pouching system and/or size.

Changing your pouching system:

  • Make an easy-to-follow schedule for your pouching system. This will ensure your skin barrier is changed before the adhesive has eroded, reducing the chance of urine or feces coming into contact with your skin. Your schedule should be personalized based on your system type and the advice of your doctor or ostomy nurse.
  • At each skin barrier and pouch change, make a habit of looking at the skin around your stoma. Redness, swelling or a rash are signs of irritation. If you see any of these, or other signs of irritation, notify your healthcare provider.
  • Never rip or tear off your skin barrier. Instead, remove the skin barrier gently by beginning with one corner of the barrier and slowly pulling off the remaining adhesive. Adhesive releaser spray and remover wipes can make pouch changes easier and ensure clean skin, ready for your next skin barrier.
  • Make sure your peristomal skin is completely dry before replacing your pouch and skin barrier. Dry skin ensures a good adhesive seal and helps reduce the risk of fungal infection.
  • A skincare routine including skin barrier foam, spray or wipes can help ensure healthy, comfortable peristomal skin for years to come.
  • In hot, humid locations, consider using a pouch with a fabric backing. This will keep the pouch from sticking to your skin and causing skin irritation.

For more information click here.

 

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Get Back in the Game

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exercise with an ostomy, active living with an ostomy, biking with an ostomy, hernia prevention, ostomy, colostomy, ileostomy, urostomy, j-pouch, IBD, Crohn's Disease, Ulcerative Colitis,

Exercise your fitness options with these helpful tips

by Wil Walker, MBA, BSN, RN, WOC Nurse Manager, Clinical Education, Hollister Incorporated

When is it safe to start exercising after ostomy surgery?
Stoma surgery is a major event that should not be underestimated. The first few weeks or even months following the operation may be difficult as you adjust gradually to having a stoma. The easiest and most effective form of exercise can be walking. It’s best to check with your healthcare provider to determine the right time for you to begin exercising, as every person can be different.

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I’m nervous about doing sit-ups and crunches because I have heard that I could develop a hernia. Are there precautions I can take to avoid this?
There may be a risk you will develop a hernia around your stoma that can be associated with straining or heavy lifting during strenuous abdominal activity. You can help prevent the development of a peristomal hernia by taking certain precautions. Keep your weight in check and talk with your surgeon before resuming any abdominal exercises.

How will I know that I am sufficiently hydrated?
One good sign of being well hydrated is passing clear or straw-colored urine throughout the day. Dehydration can be a concern for overachievers, whether they have stomas or not. Drink plenty of fluids at every opportunity to avoid problems with your stoma and with dehydration.

I am still very tired after my surgery. What kind of exercise can I do to start out?
Begin by walking in your house. Special videos and DVDs, or even just some invigorating music will help set the pace. You might practice going up and down stairs to increase stamina and endurance. But, if weather permits, walk outside in the fresh air to help boost your physical and mental spirits!

I love swimming but I’m nervous that my pouch will become loose in the water. Is there anything I can do to make sure this doesn’t happen?
This is a valid concern for a person with an ostomy. To determine how your pouch might perform while swimming, it is recommended to “test” your pouch. Sit in bath water for a while and assure yourself that the seal stays snug and leak-free.sports and fitness with an ostomy, sports, fitness, exercise, active living, colostomy, ileostomy, urostomy

I ran my first marathon after ostomy surgery and little red marks appeared on my stoma. What are these and should I be concerned?
With a lot of running, little red marks similar to mouth ulcers might appear on the stoma because of rubbing or chafing. They should heal quickly and disappear with rest. If they don’t resolve, contact your healthcare professional.

When I exercise I perspire a lot. Is there anything I can use to avoid chafing around my pouch?
If your pouch fits properly and is not too long, it should not touch or rub against the skin. Empty your pouch before any strenuous activity as well to decrease the weight of your pouch. Consider using a pouch that has a comfort panel to avoid the pouch film from rubbing against your skin.

Have a question that wasn’t answered here? Check out this helpful new brochure from Hollister Incorporated. Living with an Ostomy: Sports & Fitness.

Hollister Secure Start services provide ongoing support to people living with an ostomy. We are here to help! Call us today at 1.888.808.7456.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Know Your Ostomy

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Expect More – Take Control of Your Health Care

Part 2 in Series

By Joanna Burgess-Stocks, BSN, RN, CWOCN, UOAA Advocacy Chair

Good communication skills are the key to problem-solving.  This became clear to me when, as an ostomy nurse, I found myself having to unravel what people were trying to tell me when facing a problem.  I realized I was speaking a medical language that was not always understood, and my patients were trying to work with that language the best that they could, but miscommunication often happened, resulting in unresolved problems. One day it dawned on me that I needed to do a better job in teaching my patients ostomy language. Sometimes a change just takes a moment of truth.

My moment of truth!

I was excited and determined as a new ostomy nurse to make a difference in people’s lives and knew that I could, after having lived with an ostomy most of my life; since age three.  My responsibilities in the hospital setting were to teach people how to care for their ostomy after surgery. I would make sure my patient or their caregiver knew the basics of ostomy care. On the last day before discharge home, I would focus on how to order supplies.  I would then say my goodbyes with a simple “call me if you need me”. I realize now, as an experienced nurse, that this was only part of the story. It was not until I became involved with my local UOAA Affiliated Support Group (ASG) and started following online support groups that I became aware of the challenges people experience once they are home and face ostomy care on their own. My moment of truth came one day as I was lying on my bed with my laptop reading story after story on the online support group Inspire of people and their loved ones trying to problem solve skin and stoma issues and difficulties with trying to keep a pouch in place. There I was, an ostomate and nurse who had every resource available to me yet all I could do was offer words of encouragement and some basic information. I realized that I could not adequately offer advice because it was very hard for people to describe what was happening and I didn’t always understand what they were describing to me and sometimes they did not understand what I was saying to them.    

Changing my Approach

I started to pay closer attention to what my own patients would say to me when they called with a problem and realized that they too had difficulty describing the issues. I had taken for granted that ostomy medical language was second nature to me, but not for them.

Because the patients were not able to tell me the problems they had with managing their ostomies in a way that I could use, I was often left with more questions. I could only offer limited answers and my efforts to help often felt useless. Being a medical professional for most of my life, I felt humbled realizing that medical language can be difficult for people to understand.  Unless you have worked in or been around hospitals, you might not have learned medical words. It is mind-boggling just to know the words to use for ostomies. To get the true feeling, it would be as if I were suddenly thrown into having to build my own house and had to understand all the words involved with building. I would be lost!

The challenges that ostomates face at home motivated me to start an outpatient ostomy clinic connected with my hospital so that my community of people had somewhere to go for help.  After seeing patients in the clinic I learned that many ostomates had no idea how to describe the problems they were having with their stoma or skin. Some did not know the type of ostomy they had, some could not describe their stoma and most had difficulty describing their skin problems other than using the words:  red, painful and hurting.

Gaining Wisdom:

What I have found over the years, is that the better my patients are able to describe the problems they are having with their ostomy, the more I am able to help them come to a successful solution; whereby, they are able to help themselves. These patients also feel more confident to explore different pouch choices on their own because they have the confidence to tell vendors ( ostomy supply companies) their own stoma and skin problems. Thus the right pouching  system “match” is more likely to happen, resulting in a positive result and better quality of life. I now know that just as important as teaching someone ostomy care, it is also important to teach the language that is a part of that care.

As you read these tips on ostomy language, be patient with yourself. It takes anywhere from 6-12 months to speak the language of ostomies according to some ostomy nurses!

Know your Ostomy Type (and whether it is permanent or temporary)

Know How to Describe your Stoma:

“Stoma” an opening created by ostomy surgery.
It is located on the abdomen and is red/dark pink in color, moist and shiny.
Some describe it as looking like a rosebud.

Take a look at your stoma. In front of a mirror, look at how the stoma changes when you are standing still, twisting from side to side, bending over, sitting, and lying down. Once you have done that, you can ask yourself the following questions about your stoma:

What Does the Skin Around your Stoma Look Like:

  • Flat and no wrinkles/creasing
  • Skin folds/wrinkles  (describe where and when you see wrinkles and folds; for example “ when I sit I have creasing on the right and left side of the stoma”)

Shape:

  • Round
  • Oval
  • Irregular
  • Smaller at the top, larger at the bottom
  • Larger at the top, smaller at the bottom
  • Has one opening
  • Has two openings

Color:

  • Red
  • Pink
  • Brown (not normal)
  • Black (not normal)
  • Maroon, Blue/Purple (not normal)

Stoma Position and Level:

  • Below skin level ( in a skin fold or sunken)
  • Flush to skin level/at skin level
  • Above skin level

Know your Stoma Location:

  • Right side of the abdomen above the belly button
  • Right side of the abdomen below the belly button
  • Left side of the abdomen above the level of the belly button
  • Left side of the abdomen below the level of the belly button
  • In or near a skin crease
  • In or near a skin fold
  • On a flat skin surface

Know your Stoma size:

  • Use measuring guide to match the size
  • Round stomas are measured by diameter
  • Oval stomas are measured by widest length and width
  • Learn how to measure your stoma here

Know where the stool or urine comes out of the stoma ( this is called the “os” meaning mouth or opening)

  • On the top of the stoma and centrally located
  • Located on the side of the stoma (left or right)
  • Located on the underside of the stoma
  • Located level with skin

Know How to Describe your Effluent (output from stoma)

For a stoma that drains feces/stool

  • Color: brown, green, black, red and black
  • Consistency: thin and watery, loose, thick, soft, formed, pasty
  • Odor: no odor, mild odor, offensive
  • Amount: High output and loose, High output and thick/formed, no output, low output
  • Number of times a day you empty the pouch.

For a stoma that drains urine:

  • Color: Clear, cloudy, amber, straw, blood tinged
  • Odor: no odor, musty, fishy, fecal ( stool smell)
  • Volume: No output, low output, high output
  • Substances other than fluid (e.g., grit, crystals, mucus).

Know Your Peristomal Skin ( the skin around the stoma):

  • The skin is intact, not raw – no skin breakdown
  • The skin has sores – blisters, or looks like a blister without the skin on top
  • The skin is discolored (red, pink, purple, bruised)
  • Skin sensation (normal, itching, burning, painful)

Normal peristomal skin does not have sores, discoloration, pain, itching or burning.

Final Thoughts on Ostomy “Lingo”

Learning a new language can be difficult. My hope is that you will take the time to understand and know ostomy language so that you too will be an expert. The more you know and understand, the better you will be at expressing your needs and be able to find the best pouching system for you. Use this Know Your Ostomy Checklist the next time you need to talk about your ostomy, and see how much it helps!