When Does Having an Ostomy Feel “Normal”?

I am a firm believer in self confidence. Feeling sure of yourself and who you are is a big part of feeling good about life.

But do you know what makes self confidence difficult?

An incurable chronic illness.

And all the things that come with it.

What I struggled with was, after almost five years of living with Crohn’s Disease, I needed to have my colon removed and an ileostomy formed. The whole process of how it was going to change my body played on my mind a lot in those days leading up to surgery in August 2016.

How would it feel to have a bag attached to my abdomen for the rest of my life? How was I going to look with it on? How would I look with a massive midline incision? How would my stomach look? Would I want to look at it more? Would I hide it more? Would I accept it and feel confident, body confident?

I had a lot of questions and no one has answers. I didn’t expected any, but reassurance was in the aspect that this operation was saving my life. It was giving me back all the control that my disease had taken from in three short months since my first surgery. It could possibly give me some breathing space, some much deserved remission. I was hopeful, because so many people live with an ostomy; I had to find a way to cope. To accept it, to learnt to love it and appreciate it.

It is almost eleven months since my surgery and I am looking at my stoma anniversary in August to be a significant day but in reality, it probably won’t be. It’ll be just another Wednesday. The meaning of that date is personal to me and me alone. No one else knows what I went through, truly went through, to get to that surgery and survive it, and live my life since.

So I ask,

When does having an ostomy feel “normal”?

I asked the wonderful #ostomy community on Twitter for their opinion:

This was the response. I added the disclaimer of specifying “[When] you hardly notice it, it gives you more than it takes away” to hopefully negotiate getting actual responses and not any hateful and disrespectful comments. I took a lot away from the replies I did get, and I am happy to say that the feelings I have around my ostomy is common with others too. Feeling like I am not alone in my positive as well as my negative thoughts about my stoma has really helped me want to share my bad days, my doubts, my fears, my frustrations.

Despite most stating “six months” it was revealed that accepting your ostomy is an ongoing process, something which takes time – of an unspecified length – to explore and really appreciate. Whilst having a idea of time, also not having a time frame in mind helps. Personal experience speaks volume, and everyone is different. How we came to have an ostomy, why it happened, where and under which circumstances definitely contributes to the recovery period. To some extent, knowing the operation is not only happening but a possibility also affects recovery. Not just physical recovery but also mental recovery too.

Having a stoma fashioned correctly takes the skill and experience of a great colorectal surgeon. Luckily, mine is in a good location with a long spout to help my output fall into my appliance. Many are not so fortunate and the variations are wide and extensive. Early teething problems with a stoma are to be expected to a certain degree and my darkest days were in the beginning when I was scared alone and unable to mentally cope. But I sought advice from my SCN, built up my strength, started seeing my accomplishments instead of my failings and learnt about my ostomy, inside and out. My passion for learning has been a strong building block throughout my life with a chronic illness, of course it was going to be the same for my ostomy!

My milestones since my surgery can be seen here and here.

Acceptance is not a linear thing. Nor is it straight forward. It is a road full of twists and turns but its how you negotiate those twists, those turns, those things that are unexpected and that you’re unprepared for.

So is it more about adapting than accepting?

Many people who commented on my poll suggested this to me. And the more I let it sink in, the more I came around to it. We are continuously adapting to our chronic illness, trying to find the perfect balance so we can have some normality of life back, of trying to find something that works for us. Why wouldn’t this be the case for having an ostomy? Bowels – whether they are inside of you or on the outside – like habits. They react to stress, the environment, changes in diet and fluids. We are in a sort of flux to response and react to what our stoma is telling us. We have to adapt to the circumstances around us; going back to work, having a social life, having a sex life, expanding your dietary horizons, travelling, having children – we have to adapt.

After being sick for so long, I had forgotten all the wonderful things life had to offer when I wasn’t being controlled by disease. I learnt that my ostomy has improved my Quality of Life exponentially and despite my reservations, my doubts and my regular days of anger towards not being ‘normal’ in the bowel department anymore, I see my ostomy as a blessing. It is something that makes me unique and special and so fucking strong.  My normal now is shitting into a bag that sits on my abdomen. That doesn’t make me any less of who I was before, it doesn’t change my personality; I just have a quirk. I have something that makes me more original than before.

And most importantly, I have better control over my disease than ever before. That is one damn fine reason to wake up every morning and be thankful.

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