Kara O’Neil’s Story

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Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy

If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.

That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.

Somewhere along the way, I found my strength.  I dealt with major emotional and physical changes faster than I could even process.  I had to adapt to a whole new way of life and a whole new way of looking at myself.

Somewhere along the way, I found my strength.

These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.

Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I literally stared death in the eye and won.  It is hard to even write that today.

Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet.  Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy.  But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy.  The decision to have a permanent ileostomy was the best choice I ever made.

This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again.  I want to help as many people with IBD and facing the possibility of an ostomy as I can.  I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.

“God said to me, I am going to show you pain.  And then you are going to help other people who are in pain because you understand it” (Lady Gaga).

 

Tips for Coping in a Crisis

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Two ostomy community leaders discuss effective ways to stay positive when times get tough.

Living through a crisis is hard for anyone, but there is an extra layer of concern for people with ostomies. Hollister sat down with two influential people in the ostomy community to find out how they cope during challenging times.

Amber Wallace is the creator of the Ostomy Diaries YouTube channel and social media platforms, and Dr. Paul Wischmeyer, MD is a critical care, perioperative, and nutrition physician at Duke University School of Medicine in Durham, North Carolina. Both Amber and Paul live with an ostomy.

Q: How can people with ostomies stay healthy both physically and emotionally when facing a crisis?

Amber: The best way to take care of your emotional health is to take care of your physical health. Continue to take your supplements. Stick to a schedule and make checklists. During a difficult time, I do the same things at the same time every day and that helps. It’s also important to get enough rest and exercise, even if you have to find a routine online. Grief and anxiety can manifest physically if you don’t put those things into practice.

Paul: I agree with taking the proper supplements. Some of us with ostomies absorb vitamins differently, so it’s important to consult your doctor before starting a regimen. Exercise is also very important. As a senior in college, I was doing research with a doctor at Mayo Clinic. One day he said, “Paul, you’re getting soft and look a little out of shape – do you want to keep getting sick? You should start running and taking better care of yourself.” I had never had anyone say that before and was motivated (and a little miffed) so I started running and ran almost every day for a year. And when that same doctor performed my tenth surgery to remove my failed ileal pouch, it took only four hours instead of eight. Afterwards he said, “Your abdomen looked like you never had surgery – your adhesions were gone! Whatever you did in the last year, you should definitely keep it up!” I haven’t stopped running and exercising since.

Q: What can we do to stay healthy if we have to travel during a health crisis?

Amber: It’s important to keep a change of ostomy supplies on your person when traveling and make sure to stay hydrated. We all have leak stories. One time I was hiking in the Great Smoky Mountains and my pouch fell off. I had to change it in a porta potty! And, of course, I use hand sanitizer constantly, especially on my phone.

Paul: I’ve had leaks on planes and have had to run to the washroom with it pouring down my leg. Never a dull moment with an ostomy some days! I keep supplies in a small kit. I also always wear an ostomy belt, which helps keep my pouch secure. When my wife and I travel now we wear masks and bleach wipe everything we have to touch.

Q: Where should people turn when having a really bad day?

Amber: Stay connected with nature and focus on things that are beautiful. Take a moment and be still. Keep grounded and turn to your faith. It’s OK to cry and let those emotions out. Recognize it, feel it, and embrace it. There’s a myth that if you ignore depression it will go away. You have to deal with it before you can move ahead. Last year after my wedding I was feeling down and didn’t know why. I was too ashamed to tell anyone. So I decided to speak to my doctor. He ran some tests and it turned out that my vitamin levels were out of whack. Never be ashamed to talk to your doctor, that’s what they’re trained in.

Paul: Well, as I shared before, exercise has been a true lifesaver for me. When I’m down I also often turn to my family. Being vulnerable is hard especially when you’re sick. I often have trouble loving myself with a body that could turn on me and threaten my life at any moment. Just a few years ago, I was sick again and needed three surgeries and a prolonged hospital stay (almost a month). My wife slept every night at my bedside in the hospital. Through that I realized that perhaps I am loveable no matter what. When feeling depressed, another resource I often use is to connect to the ostomy community on Instagram and other social media. I’ve seen so many people get support from others all over the world. It’s definitely healing to share your story…and to hear others and know you are not alone.

Q: A crisis can present problems with participating in milestone events, such as graduations and funerals. How can people still stay connected?

Amber: If it’s a death, you can honor them by the way you live your life and stay positive. That’s how you can keep their memory alive. If it’s a graduation or birthday, plan something with the person or people when you’re feeling better or the crisis is over. Connection is so important. Check-in with people, even your happy friends. You never know what they’re going through. Gratefulness works too, I write down one thing I’m grateful for each day and put it in a jar.

Paul: I agree about gratefulness. In our family, we play a game every night called “3 GOOD THINGS” where we all go around and name three good things that happened each day. At our hospital, we are spending conscious time thanking people for the little things they do. Getting out of your head and thanking someone else is so essential and therapeutic. It’s so important especially if you’re down. Gratitude is as rewarding to yourself as it is to the one you’re thanking.

 

This is an excerpt from “Tips for Coping in a Crisis” in the Hollister Incorporated Ostomy Learning Center. Read the full article here.

 

Editor’s note: This 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.

How to Have a Thriving Social Life While Living With an Ostomy

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Getting to a place where you feel confident in yourself and your new routine might take some time. There are many factors to consider following your ostomy surgery, but there are also many resources available to you while you are adjusting to normal life. Having a thriving social life is not out of the question, and with some time and patience with your body, you will be living your best life.

Beginning Stages

In the beginning, it will be important to keep some sort of a journal or diary as you experiment with new foods and beverages. Figuring out how different foods and beverages affect your body will influence your social life with regards to dining out. It might be helpful to eat smaller meals more often throughout your day as you record what foods tend to cause more gas or which foods are harder for your body to break down. Remember to drink lots of water and chew your food well.

As you move from blander and softer foods to a more regular and high-fiber foods, you will notice more regularity in your bowel movements. Understanding your body’s schedule will be key in planning outings, dates, and events. As you begin to venture out of the house more, remember to bring extra supplies with you and locate the restrooms should you need one with short notice.

Getting Out There

As your confidence builds, and your ostomy becomes routine and normal to you, saying ‘yes’ to more things will become easier and easier. If you were an active person before your surgery, you will be able to resume your active lifestyle. Whether going to the gym, running along the beach, hiking through a forest, or playing a pick-up game of basketball, exercise is key to keeping you mentally, emotionally and physically fit. While you will need to be cautious in the beginning so you can fully heal, there are few limitations on what your body can do with ostomy. If you are having a hard time figuring out what clothing or specific products will help to keep things in place during your activities, Coloplast has put together solutions for a variety of different sports and activities.

Making friends aware of your new ostomy can be intimidating at first. Preparing an informative, concise story to tell people may help ease your mind. Connecting with your friends and family can help you to stay positive and hopeful and will make the transition back to regular life much more manageable. Share as little or as much as you feel comfortable about your ostomy, but keep in mind that talking about it can be beneficial to both parties.

If you are in a romantic relationship, it is likely that your partner is already aware of your surgery and new ostomy. Good communication and honesty about your feelings and your partner’s feelings will be vital to the future of your relationship. It may take time for you to feel ready to be sexually active following your surgery, but exploring this as a couple and in the timing that works best for you will go a long way in helping your relationship succeed.

Meet Others Like You

You are not alone in this new change to your body. There are many people living with an ostomy already out there who are interested in connecting and sharing their stories. It can be helpful to talk to someone who is in a similar situation and who will understand the ups and downs of this new routine. Getting connected to a group or network that shares your story can be radically healing and help with your confidence and self-esteem, not to mention broaden your social network. If you aren’t ready to venture out to a group just yet, you may want to begin by watching and hearing stories from others living with an ostomy to see how they were able to travel, date, go back to work, stay active, and enjoy a healthy sex life.

Whatever stage you are at in your recovery and healing process; if you are adapting to a new routine with your pouching system or working your way to sexual confidence with a partner, know that it is possible. While it may feel daunting to say yes to a date or go out to dinner with a group of friends, with just a little extra planning and the support of others, you can have a thriving social life with an ostomy.

 

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

Virtual Support for Ostomy and Other Needs

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By Ellyn Mantell

It continues…the pandemic is rearing its ugly head and seems to be gaining strength once again, despite never universally weakening. Whereas we assumed by this time in the fall, we would be back to some sense of normalcy, we are, instead, buying jackets, shawls, gloves, and hats so we can eat outdoors and continue to safely socialize. Travel requires an army intelligence level approach including Ultra Violet wands, visors over masks, dozens of wipes, and gallons of hand sanitizer. Seeing family feels like a tease, since hugging and kissing are off-limits, with no change in sight. I could go on, but you know all of this, and more.

The one good thing that keeps me upbeat is the wonderful feeling of connecting with our support groups via Zoom. Ostomates still have concerns and needs, surgeries continue to happen, and new members need a safe place to begin their journey to their new normal. Even those of us who are comfortable and knowledgeable still need the same safe place to discuss concerns that continue to develop. And the ability to see familiar faces goes miles in feeling comfort.

I know from others who are doing virtual support group meetings that they, too, are feeling so much more secure in the roads they are traveling. Whether it is AA, or NA for addiction, or Alzheimer’s support for spouses or caregivers, cancer survivors, etc., people need to be able to talk and gain strength. Perhaps the ability to remain anonymous may be even more positive than in-person meetings.

Zoom and virtual meetings have been a lifesaver, and had we not been in this demanding situation, we may never have discovered that. I can still remember being asked to participate in a Zoom meeting a few years ago, and running as quickly as possible away from the involvement. It seemed so overwhelming and daunting. But necessity is truly the mother of invention, and I am eternally grateful that Zoom has made itself available for the masses.

Please consider reaching out to an ostomy support group via a computer or smartphone, if you are in need of…support. There is, undoubtedly, a group to help with almost every issue you may have. I believe I speak for those who facilitate when I say we care about you, want to help you, are likely to share your concerns and feelings, and most of all, are committed to you. I know that each ostomate who walks into my life represents an opportunity to help them look at their new life in a positive way, and with that in mind, our value is rather invaluable!

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

Vlog: Ostomy Tips to be Active and Healthy

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Summer is coming and it is the perfect time to not let your ostomy define who you are or what you are able to do. Enjoy these wellness tips by Elaine O’Rourke. In this video Elaine shares her insights into diet, getting moving again, confidence and even her passion for surfing.

“Look at your mindset, that may be what is holding you back not your ostomy.”

 

Make sure to grab your FREE GUIDE: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Elaine O’Rourke is the creator of the 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 and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.  

Web: www.elaineorourke.com

Facebook: https://www.facebook.com/ostomyibdlife/ 

Instagram: https://www.instagram.com/elaineorourkeyoga/ 

Email: Elaine@ElaineOrourke.com 

UOAA Ostomy Support Groups Go Virtual During Pandemic

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By Ed Pfueller, UOAA Communications and Outreach Manager

In-person peer support has always been at the heart of UOAA. Though people worldwide now routinely connect online with others living with an ostomy, the in-person experience of UOAA’s over 300 Affiliated Support Groups continues to endure and grow year after year.

The arrival of COVID-19 is challenging groups to maintain continuity after often decades of holding a routine meeting schedule. Ostomates new and old continue to need support during this time and video conferencing technology is making this happen. Zoom meetings have emerged as the platform of choice as our world strives for human connection during this period of isolation.

The South Texas Ostomy Support Group has been ahead of the curve and before this current crisis was already live-streaming with Zoom meetings as an option to in-person attendance. “Now that we are not able to meet up, we are still using the same meeting ID (link) but now that’s our only form of meeting,” says group president Christine Miller.

Christine recognizes that some may struggle to adapt to the new technology. “I made sure it was in the newsletter so those who needed help could call me and I could walk them through how to use Zoom prior to the meeting started. I had several calls the day of. It was exciting that we had so many people participate (10 people logged on). It was much less than a normal meeting but it was still heart-warming that they were still participating. We even had a newbie come! It was fun having her because she mentioned some of her problems and I immediately texted our Coloplast rep who jumped on for 15 minutes and became a very last-minute speaker for us.”

The Morris County New Jersey Ostomy Association, which has been in existence for over 40 years, is another group adapting to the times. UOAA Treasurer and the ASG’s board member George Salamy says that, after a trial to test for bugs, he and newsletter editor and webmaster Walter Cummins sent a broadcast email telling everyone they wanted to do a Zoom call.

“On April 15th around 23 people signed on with no issues. It was a mixture of older members and a few younger members, some with spouses, and our group’s WOC nurse,” George reports. “The original purpose of the call was to see how everyone was doing and if they needed anything. Everyone seemed to be okay. We talked about if there were any issues in obtaining products. I indicated UOAA works with the manufacturers and determined there were no manufacturing issues.” George adds, “People talked about shopping, which grocery stores were stocked, and some sanitary things we should all be doing (closing the toilet seat before flushing to eliminate germs). All in all, it went well. One member, who now lives in Florida, signed on and contributed much to the call. We decided to do this in May and will continue if needed. It’s a great way of keeping the members engaged.” After the meeting, members commented and made suggestions about future topics such as; the depression aspects of this “lock-down,” yoga, sound therapy for relaxing, and suggestions on where to shop and which stores had supplies.

Bob Baumel of the Ostomy Association of North Central Oklahoma sees potential in the virtual meetings because the organization’s meetings rotate between locations. “It will be interesting to see how Zoom works for our group. We may actually get better attendance using Zoom than we’ve been getting with physical meetings, considering that members who don’t feel well enough to travel to meetings, or who live far from our meeting locations of Stillwater and Ponca City, may nevertheless join meetings which are conducted electronically. Maybe we’ll like Zoom so much that we decide to continue holding some meetings with Zoom, even after the Coronavirus pandemic is over,” Bob says.

Liz Hiles of the Greater Cincinnati Ostomy Association has already hosted several Zoom calls for her group and hopes participation will increase. “I like the option on a number of levels and hadn’t previously considered it. I need to learn more about how to conduct and make it more productive. I like it for the younger folks who may be on the go or traveling. Though that could also apply to older populations too. I also like it for those that may be homebound or in a facility for whatever reason. Hospital, rehab, nursing etc.” Liz also organized a Zoom call for a group of young adults who all connected at last year’s UOAA National Conference and have tried to stay in touch on Facebook ever since.

Remember even if you have never attended a UOAA support and information group in the past you can always reach out and call a local leader nearby you for support. If they are not holding virtual meetings and you are familiar with the technology, perhaps ask if they need a volunteer like you to help them set it up for the group. Use whatever technology you and your group are comfortable with.

You can also use a landline to call into the group to chat, if you don’t have a smartphone or a camera on your computer. Zoom offers a free version if your group does not want to invest in a professional account. Members will just need to log back in when the meeting time hits its 40-minute limit. In recent weeks Zoom has responded to privacy concerns and it is suggested to use the password option for added security. Also, the Federal Trade Commission recently shared guidelines on staying safe while video conferencing.

This is a time for all of us to reach out and make sure our community is safe and supported. Although we are apart for safety, we can still remain connected and together.

Simple Ways to Reduce Anxiety and Help Your Immune System

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By Elaine O’Rourke

With the increased and heightened attention on the coronavirus, it is naturally creating a lot of fear and anxiety. This fear not only affects the mind but also the body. Right now, you want to keep your immune system strong and focus on calming your mind and nervous system and of course use necessary precautions.

Proper Breathing, as well as other techniques, will help reduce cortisol levels (one of the stress hormones that can wreak havoc in your body) and helps promote the relaxation response in the body.

Deep focused breathing has so many benefits and there is a lot more science behind what the ancient yogi’s already knew. As a long time yoga teacher, I know firsthand how amazing proper breathing is. I credit it for helping me recover from surgeries much faster and for regaining strength. Wim Hof (the Iceman) has been instrumental in recent years for promoting the benefits through his method. Many scientific studies have been done on him proving that you can control the autonomic nervous system and immune response. The following is a basic guided breathing and relaxation video. 

Make sure to grab your FREE GUIDE: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Elaine O’Rourke is the creator of the 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 and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.  

Web: www.elaineorourke.com

Facebook: https://www.facebook.com/ostomyibdlife/ 

Instagram: https://www.instagram.com/elaineorourkeyoga/ 

Email: Elaine@ElaineOrourke.com 

When an Ostomy Reversal Plan Takes A U-Turn

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By Ellyn Mantell

Setting the scene for you, imagine the patient who has controlled ulcerative colitis or Crohn’s Disease, or diverticulitis and is suddenly terribly symptomatic with infection and unremitting agonizing pain. Or consider the patient who has an accident in the intestinal region of their body. Or the patient who hears the news following a colonoscopy that there is colorectal cancer. Or the patient, like me, whose motility issues have made it impossible for the bowel to function. All of these scenarios are happening every day, all day, in hospitals and households and they all may very well lead to either a colostomy or ileostomy. (I believe a urostomy is always a permanent surgery)

Frequently, depending upon the physicality of the ostomy, a reversal in a matter of six months to a year is either discussed or promised to the patient. It is usually explained that for the connection to heal, it requires that time, and once healed, the reversal is smooth sailing. Except, in many cases, it is not, and that is what I want to bring to your attention, based on the people with whom I have spoken. Please remember, I am not a medical professional, but I interface closely with many patients in many situations, so I speak from my observations.

Sometimes, during those 6-12 months, the sphincter muscles of the rectum stop fully functioning, and the patient may be tied to the bathroom as never before. Or the connection is narrow and there may begin a pattern of bowel obstructions due to the backup of stool. Other times, the surgeon had good intentions for a reversal, but the patient is simply not a good candidate due to illness or stepping out of remission of some disease process.

The reason I am writing this graphic and perhaps uncomfortable blog for many to read is that an ostomy can happen to anyone for a variety of reasons. UOAA estimates there are 725,000 to one million of us in the United States who have ostomy or continent diversion surgery. I want to educate all ostomates that making peace with their new anatomy may be safer and provide a more predictable future than hopes for a reversal. I believe and have heard from others who give ostomy support that those who know they will be an ostomate for the rest of their life tend to be more open to embracing their new body, physically and emotionally. Those who have been given (false, in some cases) hope for a reversal are frequently disappointed and angry, feel betrayed and lose faith they will ever be “normal” again.

Support Groups are a wonderful way to begin to think of the new normal. It is so beneficial to meet like people, learn about appliances, clothing, foods, sleep, intimacy, maintaining health and to simply share experiences. If you cannot find one in your area, contact the United Ostomy Association of America or your local hospital. Take a family member, caregiver or friend if it gives you comfort. I guarantee you will feel empowered by taking this step, whether you are having a reversal in your future, or are embracing your ostomy for life.

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

 

 

 

Reach Out for Ostomy Support

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You are not alone, A Community of Support is Here to Help

By Ellyn Mantell

Upon returning from a day of errands, my hands full of packages and bags of food, the phone rings, and it is a familiar call. It is from a woman who is fighting tears (this I recognize from the many calls I receive) and immediately, bags and packages left on the floor, I go into SUPPORT mode. I imagine this lady has used every bit of determination and perhaps energy she has to call a total stranger to discuss the most intimate details of her health and anatomy. She needs my full and undivided attention, because if I am remiss in that area, she may never reach out for help again. Before we even move past the pleasantries of conversation (hello, how are you?) I know she has been through so much. She will tell me the details, and each survivor is unique, but I already know she is scared, suffering and feeling terribly alone.

This lady tells me she is extremely disappointed because she just discovered that her colostomy, which resulted from the loss of some of her colon, will not be reversed, as she had hoped. It is too dangerous, and her ulcerative colitis is rearing its ugly head. Instead of the reversal, she needs her colon and rectum removed, and will, therefore, have an ileostomy. It has taken her a year, she tells me, to accept what she thought was a temporary colostomy, and now she will need a permanent ileostomy. Not only is her head spinning, but she is feeling like she has lost total control of her life.

These are feelings we all have, and my heart is right there with her as she laments the loss of yet another part of her body. Looking ahead to at least another major surgery, we discuss the fact that she is in mourning and grieving, and then her tears began to flow. I tell her to please cry, sob, let out her feelings, whatever they may be, I am up to the task of listening and comforting. After all, I have had 23 major abdominal surgeries…I have had my share of tears and need for comfort.

We end the phone call with each of us making a promise: she will attend our next Ostomy Support Group at Overlook Medical Center in Summit, New Jersey, and I will be there to listen to her fears and concerns as long as she is in need of sharing them. I told her I wear a flower at each of the Support Group meetings I lead, because I have had so many sent to me over the years and that it is a great way of identifying myself to new members. Flowers always bring a smile to others. She will find me the day of the meeting, because I will be waiting in the foyer to bring her in, make her feel comfortable, introduce her to many like herself, and show her how special she is for reaching out and asking for SUPPORT!

Reach Out to a UOAA Affiliated Support Group near you and learn more about the emotional impact of ostomy surgery.

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