How I cope with ulcerative colitis Ileostomy stigma

The topic of bowels has always been seen as taboo and never openly talked about. For people with Ulcerative colitis ileostomy from resulting surgery, dealing with this stigma can be extremely difficult psychologically. IBD alone can come with a rollercoaster of emotions from multiple toilet visits, particularly at work, in public places or in other peoples homes where smells etc can be noticed. The challenges are the same with an ostomy bag. People who do not suffer from IBD/or have an ostomy can be embarrassed and react awkwardly to us, which increases psychological strain.

How I suffered with Stigma of Ulcerative Colitis Ileostomy Surgery

There is also the pressure when communicating about our conditions to others. Because of the stigma around bowels and poo people simply do not know how to react and show embarrassment, or some may even judge us through lack of understanding about IBD/Ostomy. These reactions can cause us to feel low, anxious and depressed. It also prevents us from having meaningful conversations about our issues with friends/family, this is damaging as talking really helps people cope with it.

Because IBD and ostomies are hidden from view, we can appear healthy and ‘normal’. IBD sufferers will go through periods of remission and others where they suffer terribly, this can be hard to understand for people particularly close family members. People fail to see the issues attached to ostomies because they are hidden from view, family members can just assume you are ok – forgetting you have to manage an ostomy and its issues on a daily basis. There something wrong with the way the world views bowel issues, when emptying bowels is something every human does – why respond to bowel issues as if it is only something an alien does?

In the early days of suffering with ulcerative colitis, the rollercoaster of flare ups, the stigma and its mental fallout was the most challenging. Sometimes at work after frequent toilet visits I’d hear comments like ‘you got the runs again’ or ‘what have you eaten this time’. With a lack of knowledge of the disease, this was very damaging to my mental health. People would even try and play it down by saying its ‘IBS’.

Sometimes I would be so fatigued from flare ups, working 9-5 took every drop of energy I had. Not to mention the psychological effects of multiple toilet visits and the resulting stigma. So when I wouldn’t attend family or social events, people would make comments as if I wasn’t making any effort or being rude. (Its clear now these people were toxic as true friends/family wouldn’t respond like that, but that’s another issue!) I have never been a complainer, so friends/family would see me at my best and just assume its all under control, forgetting a flare up can strike at any time.

Having an ileostomy, I faced similar issues. At first, people close treated me with sympathy and care but I always sensed their horror at the thought of me having a ileostomy bag  – as if they thought my life was over. This did not help my already rock bottom self-esteem. Then, as I improved got back to ‘normal’, I was facing judgements about attending events etc when I really just didn’t feel like it after a week of stoma bag issues and its resulting mental impacts, certain people forget quickly unless its in their face daily or you constantly shout about it which I have never done.

With ileostomy bags, there is also the stigma around changing/emptying the bag at work/friends houses/public places and resulting smells etc. The thought of what people might think about this raises anxiety. With an ileostomy bag, appearance is also hard to cope with mentally. With such pressure to ‘look good’ nowadays with social media, celebrities etc  coping with a stoma bag can be tough mentally – especially when swimming or on holiday etc. It was even a worry at first when wearing clothing if people would notice it etc.

Here is how I strengthen my mind and defeated the stigma surrounding ulcerative colitis and resulting ileostomy.

Prioritize Mental Wellness

This is by far the most important. Mental wellness gives you the strength mentally to overcome the stigma attached to IBD and ostomies. It is important to prioritize these activities to put your self first, so you can cope with life and IBD. Have you ever faced a stressful issue and then slept or gone for a walk, and it doesn’t seem so bad? This scenario can be applied to the stigma surrounding IBD/Ostomies.

Re-evaluate your inner circle

This can be difficult at first and took me years to realize how important it is. Toxic people over step boundaries, make comments, judgements, try to control and manipulate or even enjoy the fact you are struggling with IBD/Ostomy issues. Certain toxic people can enjoy being around someone experiencing chronic issues in order to make themselves feel better, and you fall in to the trap of thinking they are helping. I have encountered a few people that were doing this to me in my life. Some people also chose to take it personally when I was acting ‘differently’ by making steps to change my life in order to cope, when I was subjected to comments attacking my integrity. This made me feel low, depressed and anxious as I did not understand they were being toxic, I actually blamed myself. This then caused me to overly focus and worry about my condition and the awkward situations it causes.

It is important you evaluate who you are close with, and if they display these behaviors towards you, put distance and boundaries in place. Without boundaries and distance, they will drag you down and you will struggle even more to cope with the horrible symptoms of IBD and/or resulting surgery. Toxic people will make you feel low, so they can feel better. Removing these poeple from your life, will improve your mental strength and ability to cope with the stigma.

Avoid body image focused reality TV and social media.

These shows and ‘influencers’ serve no purpose to society, especially those with IBD and/or ostomy bags. They are promoting a world where everyone has to look perfect to be perfect. This is damaging to anyone who views/watches as it creates unrealistic expectations which erodes mental health. Particularly sufferers of IBD and/or ostomies as we are already battling these feelings relating to the stigma, without being brain washed that we have to look perfect. This is the very reason people cannot handle bowel issues and it remains hidden from view. I spend my time following people/watching shows that can inspire me and build my confidence, rather than something that makes you feel like you should hide your problems to look perfect. We all have the ability to be something special, no matter what you look like or what illness you may suffer with.

Communication

Regular communication is very important. Successful relationships with friends/loved ones all revolve around good communication. This is extremely important if you have IBD and/or an Ostomy. It is hard for people to understand what we go through, and many people will often revert to forgetting that we even have an issue. Regular communication about feelings, issues, struggles with loved ones in a concise way can help them understand better. This can relieve any stress/tension that may arise during flare ups or hard moments relating to the stigma surrounding IBD.

I have found just talking and being open and honest in general with friends/family is a good way to help mitigate any stress, anxiety or depression. Holding back your struggles will only make you feel worse and build more tension around the stigma’s.

Seek Therapy for ulcerative colitis ileostomy stigma

I have had therapy and it has been a big help. A therapist can help you identify toxic people in your life, or triggers and situations that are making you feel unwell. This is particularly helpful if you have IBD, as we know stress is a major factor of the illness. One of things I learnt in therapy was all my flare ups were related to situations in my life that I had no idea were impacting my mental health – there was a correlation between mental health and flare ups. Therapy has helped me remove the need to worry about what people might be thinking. I have realised healhty, balanced people will never judge or laugh at a person who is ill. Therefore, anyone doing this, is not someone I want to be around, or care what they think about me.

Sleep after ulcerative colitis ileostomy surgery

Adequate sleep makes you think clearer. If you are tired, issues can seem far worse. Sleeping well helps the mind tackle the stigmas relating to IBD/Ostomies.

Focus only on things that are in your control

Overly focusing on the impossible can raise frustration, which builds anger and anxiety leading to depression and low moods. We cannot cure our conditions. Therefore, always focus on what you can influence. Focusing on personal goals and development, hobbies, studying etc. can improve self-esteem. Making small manageable gains in these areas can help you tackle life with more confidence.

How these things help defeat the stigma from ulcerative colitis ileostomy surgery

After integrating these steps in to your lifestyle, the stigma surrounding IBD and ostomies will still be there. Unfortunately the world we live in will always promote body image and hide the fact that we all have bowels that need to be emptied, no matter how ‘perfect’ you look. You will still face the uphill battle of coping with running to the toilet, body image, social expectations, working etc. We can’t make these thing go away unfortunately. But adding these steps, will build the mental strength needed to cope with them, to not give up, and thrive in life.

To see how i used fitness to improve my life with an ileostomy please visit How fitness improved my life after surgery for Ulcerative Colitis

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