Tag Archive for: self care

The Heat is On! Hydrate with an Ostomy

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By Ellyn Mantell

While walking this morning it occurred to me that for many Ostomates, the heat is very challenging. Ileostomates, in particular, are prone to dehydration because our stoma is always productive. In Mother Nature’s inimitable creation, the colon, or large bowel, is responsible for absorbing fluids and allowing them to be reabsorbed into the body. Since ileostomates either no longer have a colon or it is no longer being used, the precious fluids are flushed from the body through the stoma. Hence the rapid filling and refilling of the pouch, which can be worse in the heat.

Naturally, drinking water is advised. UOAA’s new ostomy nutrition guide recommends you “Make a habit of drinking water throughout the day. At the same time, limit or avoid beverages with added sugars and artificial colors and sweeteners.”  Many of us may have difficulty drinking enough to support our anatomy, so we need to be mindful of symptoms that we are lacking the hydration/dehydration balance.

Some symptoms of dehydration include headache, fatigue, dark or decreased urine, lack of concentration, dry mouth, feeling disoriented, shortness of breath, dry skin, stomach cramps. Additionally, leg cramps, loss of appetite, drowsiness, tingling in fingertips and muscle weakness are all concomitant to dehydration.

Learning to live with the chronic dehydration possibility presented to ostomates is certainly attainable. For me, since I do not have a high blood pressure issue which might preclude adding salt, it means adding it frequently at meals. It is strange to servers at restaurants when I ask for the salt shaker, and many have asked if I mean the pepper shaker? We have become a salt-resistant society. But there are those of us who need it for our fluid balance. Additionally, I have a handful of a salty snack before bed, such as pretzels, since nighttime muscle cramps can be very painful and cause sleep deprivation. I keep a bottle of tonic water in the refrigerator, as well as a jar of pickles for those times when nothing else works. For muscle cramps I recommend an over the counter foam moisture. The manufacturers recommend using it prophylactically at night, but I have found it usually very fast-acting when I have foot or leg cramps, so I apply as needed.

Many Ostomates swear by sports drinks like Gatorade, but truthfully, although I have a bottle in the refrigerator at all times in case of fever, I find it difficult to drink. However, if presented with the option of drinking it or winding up in the Emergency Room for fluids, I will imbibe gladly! It’s recommended you dilute sports drinks to reduce the sugar content as well. At some of our Support Group meetings I have heard of many different electrolyte balancing drinks and powders, so you may find one that works for you.

UOAA recommends you drink 8–10, eight-ounce glasses of water/fluid daily. If you have a urostomy this also helps prevent UTIs and keeps urine diluted. Concentrated urine also can cause odor.

View UOAA’s Eating with an Ostomy Guide for more hydration tips such as avoiding excess caffeine, eating foods with a higher water content and sipping your liquids slowly.

It has been recommended that Ostomates drink more than simply water, since it flushes through the system and little gets absorbed before it exits through our pouch. Drink with meals, since food slows down the transport of fluids. Bring fluids with you when you are out and about, since being busy may cause us to forget the responsibility we have to stay hydrated. Lastly, in addition to feeling awful when we are dehydrated, being in that state puts a great deal of pressure on our kidneys, and can lead to kidney failure and lightheadedness, which can lead to falling.

Although this sounds ominous for summer fun, being mindful and smart will help us to relax and enjoy ourselves…after all, with the Covid experience, we have learned to grab the good and be grateful we are as healthy as we are!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

Ostomy Self-Care and Wellness Tips for 2020

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By Elaine O’Rourke

During the winter of 2005, I went from being an active, strong, 35-year-old yoga teacher to being completely debilitated, feeling like I was 100 years old and barely able to move or walk.

An extreme flare-up of Crohn’s disease resulted in a temporary ileostomy which was then made permanent after a year. I was down to skin and bones and had lost most of my muscle mass. My hips and whole body hurt when I slept as I was so skinny. There was very little that I could do. My body just needed to rest as it took too much energy for anything else.

When I began to regain my strength after my temporary ileostomy, I had a renewed appreciation for walking and what a good simple exercise it is. Just getting out for fresh air, step by step, seeing people and walking the beach. I had missed simply going to shops. Ahhh, to be able to move again, what a gift.

I had never considered going for my daily walk as a “gift” until I couldn’t do it. For many people, including myself, it’s not until things start going wrong that you realize how much you take your health for granted.

As I recovered I was able to slowly get back into my yoga practice and doing everything that I wanted to do. In fact, last year I started surfing which is now my greatest passion. It was previously the one thing I thought I could never do with an ostomy.

My point being, having an ostomy does not mean you can’t exercise or do sports. Just do them mindfully and within your limits. Taking good care of yourself is now of utmost importance. Real self-care not only addresses how we take care of our physical bodies but also how we deal with our emotions and how we think. After all, everything is connected.

Life with an ostomy has a lot of pent-up emotions, thoughts, and challenges. The physical body also holds on to memories and traumas within its cells. This is why you may experience or even hear of people who recall things when getting a massage, or you might start crying when you get bodywork done or when you are moving mindfully in a yoga class. The “feeling experience” is providing a release for these memories.

In my program “Surviving to Thriving: Overcoming Ostomy Challenges so you can Live a FulFilling Life” I focus a lot on the mental and emotional issues that occur but also on the importance of keeping active and making healthy lifestyle choices. As you journey into the New Year and decade what are the more tangible things you can do for your physical well-being? We all know that New Year’s resolutions go out the window by the second week in January, or that they never happen at all.

Instead, consider doing things that will contribute to your health and happiness and set a plan in place. If you find it hard to keep yourself motivated or don’t know where to start then reach out and contact me.

Strategy tips for self-care

1) Move your body
Buying a gym membership is useless– unless you use it! Our ancestors did not live sedentary lives, yet, these days in general, we are very attached to sitting around. Many people work at desks, sit in cars commuting and then sit on the couch to chill out! But our bodies are designed to MOVE.

Tip: Get up and walk around more, even set a chime to go off on your phone to remind yourself. As mentioned, walking is a great way to keep things moving and it’s free. Even a quick five-minute walk is beneficial. Meet a friend for a walk instead of coffee, or both! Move your arms over your head more. Add in some simple stretches. Basically, MOVE as much as you can as that is what our bodies are designed to do.

2) Food choice
If we think we are going to be “depriving” ourselves of something, then we will do anything we can to sabotage our best intentions. For example, If we say we are “giving up chocolate” then chances are we become obsessed with thinking about chocolate and our resolution only lasts a day! Your body is like a temple and keeping it healthy requires the right choices. This will affect your ostomy output, energy levels, muscles, organs, bones and joints.

Tip: Focus on adding in certain foods that you know will be healthier for you. Hint – these foods are mostly in the fresh produce sections of the supermarket. Before you eat and drink ask or even visualize how your body will respond, how your organs will feel, how well your GI tract will digest. Eat slowly, chew and enjoy your food. Notice how it affects your system, energy levels, and your ostomy output.

3) Make it fun
If you dread doing something, then it won’t get done. So find something that is enjoyable. Not everyone likes exercise or sports but there are many different ways that you can treat your body with more kindness.

Tip: Dancing is a great way to move. Maybe go out to hear live music where you can move on a dance floor, or take a dance class. Put music on at home that energizes you. Walk up and down the stairs a few more times. Use a fitbit watch as a way to incentivize yourself.

4) Schedule time for yourself
There are a lot of distractions that pop up during the day and before you know it, you haven’t done anything you intended to do and the checklist is still staring at you.

Tip: Schedule in your planner when you are going to do your (walk, fun movement, cardio class, yoga, meditation, etc.) Be consistent and try and have it at the same time and on the same days each week.

5) Know that you deserve it
There is nothing like a promise of a “treat” or “something special” or to plan out “bribery” if you do something! Self-discipline comes more naturally to some but it takes practice.

Tip: As you decide the new ways you are going to do things in 2020, also give yourself a promise of a self-care present when you complete your goals. As you try more nutritious food, exercising, moving your body (because that is what it is supposed to do) then treat yourself to a massage, tickets to a show, a work-out outfit (that you now must have because you actually enjoy exercise) a good book, and so on!

 

Elaine O’Rourke is the creator of the online holistic program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.
A free guide is available: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website
www.ElaineOrourke.com
Elaine@ElaineOrourke.com

I Just Need a Moment- Taking a Break from the Expectations of Ostomy Life

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By Tricia Hottenstein

The problem with being strong is that people expect you to always be strong. When your body has been put through so much, people expect it to willingly fight through anything. After life hands you a few too many lemons, you’re expected to just make an extra-large lemonade. The problem is, sometimes I can’t be strong. Sometimes I just don’t want to be.

When I get a new diagnosis or the old one flares up, I don’t always react with immediate strength. When I wake up to a leak or suffer through an obstruction, I don’t always react with immediate strength. When I need to call off work or cancel with friends and feel like I’m letting people down, I don’t always react with immediate strength. And sometimes, my lack of strength is why I need to cancel. Because it is damn exhausting sometimes. Dealing with life, dealing with an ostomy. Dealing with doctors and tests and medicine. With random pain or nausea. With what seems like a constant cycle of bad news after the last bad news. Dealing with an independent and stubborn 5-year-old when I’m not at my best. It’s exhausting.

And I just don’t want to be strong. I want to slump down in my seat and sob. I want to be needy, and helped. Most of the time, I feel like the benefit to

The author gets some much-needed self-care that is so important in life with an ostomy or chronic disease.

this life is that it made me a better person, a better friend. I can support someone through their hard moments because I’ve been through enough of my own. I may not be the most compassionate person in the world, but I will be there. For even an acquaintance. I will help anyone I can, however, I can. But the downfall is that sometimes I want to be the person on the other end. I give my strength to so many other people, yet for the most part, I feel I rely mostly on my own. And most of the time, I am strong enough for that to be possible.

Although I always think I’ve had this strength, having an ostomy made it necessary to rely on myself. By the time I had the surgery, I learned what I could and couldn’t eat. I had to self-navigate my triggers and try to make sense out of them. Oftentimes, I needed to coordinate doctors with specialists and be competent enough to fill in the blanks of my medical history. Mainly, I just had to deal. With the embarrassment, the unpredictability, and the often crippling pain. And then I had surgery, and had to be strong all over again. I had to relearn what I could and couldn’t eat and figure out all the tricks for keeping my ostomy happy. The learning curve was a tough one. Sure, there are support groups. But this is also an individual journey and I needed to be self-sufficient and strong.

But mid-meltdown? I am not. I want to be weak. I need to take a moment to feel sorry for myself. I do not want to hear about how I can beat anything because my body has already tackled everything else. I need to cry and process all the thoughts swirling in my head. I need to feel frustrated at the nonstop barrage of crap being thrown at me. I need to let my shoulders fall and my eyes sink. I need someone to be there for me the way I hope I would be there for them. I just need a moment. Because honestly, I AM strong. And I am damn proud of it. I try to be positive and handle things with composure and as much grace as my body (and personality) can put forth. And once I stop feeling sorry for myself, I will stand up and shake off and go forward and tackle everything on my plate with a vengeance.

I just need a moment.

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