The Challenge of Being a Patient.

Life is not the same when you suffer from a medical condition. Everything changes, for instance you may require more time to complete a simple task that would initially take seconds. Similarly, getting used to the challenges that were not apparent, when the symptoms were developed, and then adjusting to an altered lifestyle can be very hard. 

As a chronic patient I understand how challenges and opportunities become a part of everyday life. However, this is due to me spending many years with a future looking so dark; full of obstacles, emotions and failing attempts to communicate.

How would I ask for help without the constant thought of being a complete burden to my loved ones? Arrangements would often have to change or be cancelled because of my continual symptom’s taking over my social life and agenda… I was becoming a person with broken dreams and very little energy for life.

Seems very catastrophic, doesn’t it? It’s something that is very difficult to accept, yet seems to be a very frequent state of mind.

fear, limits

The Big Obstacles
Fear:
  This natural emotion had two fundamental and basic functions. Firstly, providing an alert about real-life risks. This is a constant thought due to us unknowingly making the best and important decisions to save our lives.  The most important and functional – Provide and alert about a real-life risk- with this signal on countless occasions through our life we have taken the best decisions and saved our life. The second function is when you receive bad news, or are under so much pressure that you’re petrified. It’s hard to move, think or even feel in a positive way. Surprisingly this has a name, ‘Fight or Fly’ – when referring to the stress reactions in your body.

Keeping the issues personal:  The decision to stay silent without communicating; believing that what happens to us just concerns to us. Believing that being alone is the best solution or going through something very difficult causing unprecedented emotions and a lump in the throat… this feeling can only lead to more physical difficulties, emotionally, not just involving yourself, but your loved ones too.

Close your eyes and believe everything will go away: Close your eyes and believe that everything will go away: A craving of belief that nothing will happen. The idea in your head that if you just leave it, it will just go away, magically. However, by not getting properly informed you’re avoiding an unescapable reality.

child and nurswe

Negative thoughts:  Those that trap you, entangle you and lead you to negative emotions like anxiety, stress, hopelessness and guilt. They consume a lot of our energy and attention, it is very easy to fall into them and by staying in these thoughts we can have a real or imaginary painful experience.

 The truth is that also, although there are some barriers there are also great aids:

Community:  Human beings are social beings by nature, we live in society from the moment we are born. Our social circles have a certain measure and way of communicating and sharing. If we are part of society then we belong to a community, regardless of whether it is small or large, frequent or not, close or not. Our needs also lead us to share new forms of emotion, language and thought. Being a person with a special health condition also opens the possibility to recognize new ways of belonging to a community and then feel identified, supported, understood.

Family and friends are generally the closest circles, it is true that sometimes even there it is difficult to communicate or feel  complete with an understanding about our needs, however it is important to look at ourselves and understand if any of our enemies, like fear, keeping silent unnecessary or not wanting to face what happens to us, is what hinders the circles to support our needs in the most functional and positive way.

Space for breathing, silence and reflection:  We live in a world full of noise, emotions, thoughts, tiredness, daily tasks, pain and worries, that’s enough to keep us away from ourselves and not connect with the most essential thing; our own being. Silence, that special act that allows you to place yourself in a protective bubble. It is an extremely special ally since this is where the mind can lower your body’s rhyme and pace and from there provide rest, relief, opportunity to make decisions and recovery. Simply observing our breathing allows us to breathe deeper, with proper rhythm, bringing essential oxygen throughout the body and providing instant relief. Keeping silence and breathing deeply is so that we also have the possibility to reflect. We need to let our mind lead us to a clear analysis of what’s happening. A realization of the type of emotions that accompany us and then also provide the possibility of best decision making.

Information:  We are surrounded by information. Through multiple channels we have access to what we are looking for. When we live with a special health condition that affects our lifestyle we can use many technological tools to inform us by reliable sources about what is important to know.  Having the possibility to inform the people who become our support systems what happens to us, what we need and what is important to decide about our future?

self compassion

Self-compassion and positive thinking:  Recognizing ourselves that we are doing the best we can every day is a way of caring lovingly. Looking at ourselves without judgment and being self-compassionate is calming for our soul and heart. Positive thinking plays a fundamental role because it is powerful and acts on our quality of life as it impacts on the way we see and interact with ourselves and the world. To think positive is to look objectively, hopefully with the confidence of knowing that we will go step by step while offering the possibility of finding the best tools to live in the best possible way. This attitude and thought also open the possibility to receive external support, to feel supported, understood. Facing reality with the personal skills we already have making them work for our own good and that of others. Having a health condition can be the best system to find new ways to communicate with the world, find solutions, empower ourselves, transform the society around us and why not improve our health and quality of life?

 

A Ray of light

Currently there are multiple ways of having face-to-face or virtual supports, this facilitates the forms of communication and understanding of our reality as patients. Communities are great support systems and in them we can deposit our doubts, concerns, needs, contributions, and our transformation that benefits others.

If you are someone who has just been informed about the new condition of being ostomy patient or for some time, already has been different modalities where you can find support by others sharing the same condition, experts in the medical field care and attention, as well as simply possibility to share life, its challenges and great joys.

Some places where you can go and contact others like you are:

Discussion groups https://www.uoaa.org/forum/index.php

Friends Ostomates Worldwide: https://www.fowusa.org/

Buddy Programs in Hospitals where you can contact patients who already have a process of time and progress in their condition which allows them to accompany other patients in the same situation. It is important that you ask your doctor or nurse about this possibility so you would be accompanied in this life experience

11 Health Senior Patient Engagement Officer Keagan Lynngard-Hysell who will be happy to make contact and accompany you in this process as she is also an ileostomy patient truly advocate on helping and accompanying others in their same life situation.

For 11 Health, you are very important and that is why we take care of developing different solutions that allow to support your needs, come with us and we will be glad to be there to accompany you on the way of living with an ostomy. Together we can do it!

 

Sources:

Eaton, R.J., Bradley, G., Morrisey, S (2013) Positive predispositions, quality of life and chronic illness: Psychology, Health and Medicine, 4, 19, 473-489.

Kristofferzon, M., Lindqvist, R., Nilsson, A. (2010) Relationship between coping, coping resources and quality of life in patients with chronic illness: a pilot study: Scandinavian Journal of Caring Sciences, 476-483.

Zhao, J., Abrahamson, K., Anderson, J., Ha, S., Widdows, R. (2013) Trust, empathy, social identity, and contribution of knowledge within patient online communities: Behavior and Information Technology, 10, 32, 1041-1048.

As someone who has spoken on the “ostomy patient perspective” for the last few years, I have found the most common questions asked during Q&A revolve around dating, relationships, and sex. So, with it being Valentine’s Day, I found it most appropriate to share my experience of dating, relationships, and sex with an ostomy.

Dating & Relationships

I never thought I could date or have a serious relationship with an ostomy until I did. The dating scene can be stressful and often causes the fear of rejection (and that’s without an ostomy) so entering the scene after having surgery can feel a bit intimidating. However, dating can also be a fun and exciting experience, and having an ostomy should not scare you away from enjoying someone else’s company. I’ve had my fair share of dating since having my surgery over 10 years ago, and to be honest I didn’t date much prior to my ostomy (mind you, I was 15 years old at the time of my first operation and I’m not sure what you would even classify as “dating” at that time). None the less, the majority of my dating experience has been with my ostomy.

“I never thought I could date or have a serious relationship with an ostomy until I did.”

When and How Do I Tell Someone?

With this topic being amongst the most popular questions, I am often asked, “When do you tell someone you’re dating that you have an ostomy?” The answer is, whenever YOU want! It is your body, this is your journey, and this is your potential relationship. Personally, I preferred to feel it out, see if the relationship had potential, and made my judgement from there. I rarely ever told anyone before the 3rd date, because in my opinion, having an ostomy isn’t really one of those – “Hey, what’s your sign?” kind of ice breakers. I usually kept things under-wraps until I knew I was really interested. Now that I am more open with my disease and my ostomy in the efforts to raise awareness, who knows, maybe it would be a first date topic?! Plus, these days with social media, things like Instagram and Facebook pictures tend to blow my cover (Que bikini photo on the beach, ostomy out – loud and proud!).

The (gut) Reaction

I’m not sure if I’ve just been lucky, but I never experienced a negative reaction when telling someone I’ve dated about my ostomy. I’ve experienced a variety of reactions; more in the sense of empathy, understanding, and downright fascination (literally asked if he could touch my stoma), but they all have been positive and very supportive. In all honesty, if I ever did come across someone who had a poor reaction, I would have been grateful. My grandmother joked that my ostomy ruled out the losers, and I would have to agree. I would have never wanted to be with someone who couldn’t accept my ostomy, it is a part of me.

“I would have never wanted to be with someone who couldn’t accept my ostomy, it is a part of me.”

I do believe that presentation is key. The reaction you receive from others often reflects the attitude you have towards your ostomy and how you share that information. So be positive and proud of your body- it is beautiful.

“The reaction you receive from others often reflects the attitude you have towards your ostomy and how you share that information.”

Sex

Surgery has its own timeline as to when you are physically able to get back to sex; but whether you are emotionally ready for sex after ostomy surgery may be within a different time-frame. Be patient with yourself. An ostomy pouch isn’t necessarily the latest and greatest bedroom accessory to make you feel sexy, or boost your libido, and sex can be intimidating with an ostomy. However, whether it is with your spouse or a one-night stand; it is important for you to feel comfortable.

Sex as a single/dating person is obviously different than sex as a married couple- ostomy or not; and where you are in your relationship may factor how much you’d like to share with someone. But again, whether or not you choose to share that you have an ostomy is entirely up to you. You might be asking yourself, “How can I keep my ostomy a secret once it comes time to enter the bedroom?” Take it from me- it can be done! If and when you do decide to tell your sexual partner about your ostomy, be sure to let them know how you are feeling, what positions you are comfortable with, and inform them that they aren’t going to hurt you (same advice applies to your spouse as well). Fortunately, if you’re still not comfortable baring it all, there are lots of accessories including belts, wraps, specialty underwear, and even lingerie; all designed to conceal your ostomy pouch- allowing you to focus less on your ostomy and more on what’s really going on. Finding love is a different journey for us all, and although having an ostomy may be an added twist in the road, it is definitely not a road block to a loving relationship and a fulfilling sex life.

“Finding love is a different journey for us all, and although having an ostomy may be an added twist in the road, it is definitely not a road block to a loving relationship and a fulfilling sex life.”

 

 

 

In our continuing series of patient stories, we would like to introduce you to Joshua L, diagnosed with Crohn’s Disease at age 23.

Dear 11 health
My name is Joshua L. and Crohn’s Disease has welcomed me with open arms.

Here is my story. I was diagnosed with Crohn’s at the age of 23. I can remember the moment. I went to use the restroom and I was in pain like nothing I had ever felt before. The countless colonoscopies, 14 different medications tried, blood work nothing could get my symptoms under control. I can remember the utter panic of simply having to know where a restroom was no matter where I was and wondering whether I would make it in time. I thought this was how simply life was going to be and I had come to terms with that.

Now, 15 years later I began multiple surgeries in hopes of having a better quality of life. From 2011-2014 I’ve had my colon, rectum and rectal stump removed and have an ileostomy. During the last surgery when I was having my rectal stump removed I developed an infection at the surgical site. After the infection was cleaned out I had to heal naturally from the inside out. This left an 8 cm deep wound that had to be packed daily by a home health care nurse in order to heal.

A lot of life changing moments of weighing 100 lbs to now a healthy weight of 195 lbs. From the days of being moved to a rehabilitation center for three months after the colon and rectum were removed because I was too weak to go home. To the bouts of dehydration when learning to care for the stoma with hospital stays. Through all of this now my quality of is 1000x improved! Currently, no medication is taken and I can eat whatever I want.

I have a passion to help others who are going through similar experiences that I have gone through. I want to make a difference in other people’s lives. We need to erase the stigma and shame surrounding sometimes how people with ostomies feel. It’s ok to have one after all it saved my life!

Sincerely,
Joshua L