Blog: We spoke to men about stomas

28 June 2020

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As a model and body-positivity advocate, Natalie-Amber knows how important it is to feel confident. She is also passionate about bringing this confidence out of others and has recently been focussing on men with stomas; a group that are not always visible and vocal about their struggles and their successes.

Mental health and wellbeing is a topic that some men find uncomfortable. It is often seen as taboo and there is a belief that men should behave in a certain way, which often doesn’t involve talking about feelings. I want to spread the message that being open and honest about how we are feeling mentally is nothing to be ashamed of and shows strength and inspiration to other men who are still struggling with being open about their mental health.

Having Crohn's or Colitis is always hard to come to terms with and there's a lot to get used to. For me, coming to terms with having a stoma was very hard and it affected me mentally for a very long time. My recovery was  helped by sharing my journey as I was very vocal about having my stoma, Queen It, and found a whole IBD community on social media. I am so grateful because everyone was so welcoming, although I noticed I never really saw many men with stomas on there. Of course, there were and are men with stomas, but they just weren’t open about it.  As I grew my platform through awareness raising and body positivity I started to receive messages from men saying how they wish they had the confidence to show their stoma, or they wish they had the confidence to show their scars from surgery and I began to realise just how hard it can be for men.

I decided I wanted to try and break the silence. I interviewed seven men with Crohn's or Colitis and all are inspirational in their own way. I hope their answers help other men who are still struggling mentally with having a stoma or are trying to find some advice before surgery from those who already have stomas.

What were your initial thoughts and feelings when you found out that stoma surgery was required/had taken place?  

There were so many questions racing through my mind like “what will my life be like?” or “will I still be plagued with IBD?” but the one constant that stuck in my mind was “I just want to have my life back again and if this surgery is going to help then by all means, let’s do it”. Because of the constant disappointments of not being able to stay in remission for very long and not being able to enjoy certain foods, I felt that this was necessary and despite the fears of the surgery, I decided to go through with it with my head up high and stayed strong.

Allen, 42
Living with a stoma for 13 years

What was the biggest thing you had to do in order to adapt to life with a stoma?

The biggest thing was to learn to love and be comfortable with my body. When I looked in the mirror after surgery I saw a completely different person. I would say affirmations to myself to help me mentally deal with this lifestyle change. I got back into exercising to help my body confidence and feeling like myself again. Also being open to my family and friends about having stoma surgery helped me feel like myself again because of all the positive support I got from them and them never making me feel different or feeling sorry for me having an ileostomy.

Joel, 30
Living with a stoma for 5 years

What made you decide to be open about life with a stoma?

There were two reasons. First, to help bring awareness to the condition. But my main reason for speaking out was that I felt there were not as many men out there, unlike many ladies being so open about their condition, and there were even fewer from the LGBTQ+ Community. I wanted to be an openly single gay man with a stoma talking about how my condition affects my life and dating. We love to label people and 'gay man with a stoma' comes with its own set of problems. I have updated my dating profiles with photos of me and my bag and let’s just say I get a lot less interest now but I am still the same guy as before just with battle scars. I think guys are scared of the unknown, so if I can shed some light on the matter and help another gay man going through the same thing, then it will be all worthwhile. 

Dean, 37
Living with a stoma for 6 months

What’s the biggest change in your life from pre-surgery to now?

The stoma has brought normality back into my life, I feel myself again. I’m able to do so much more, whether it be going out into public places without worrying about toilets or doing treks. My stoma really has had a positive impact.

Muneeb, 23
Living with a stoma for 2.5 years

What advice would you give to someone learning to live with a stoma?

Every single stoma journey will be different. We have our stomas for the same life-saving reasons but they are all individual - like we are. You will embark upon a journey of discovery finding out what works for you. Some products will suit your skin and they might not suit someone else, and that’s okay; you and your stoma are unique. The biggest challenge for a new ostomate is simply acceptance of your stoma. Accept it, personalise it, give it a name, embrace it and move on with your recovery. The worst thing you can do is shut yourself way. It might be difficult, but many things in life are difficult, and it is how we step up to meet our challenges that not only help ourselves but also others around us. Look out for help from those of us already in the IBD community- we’re out there to support and help you if you’ll let us.  

Keith, 58
Living with a stoma for 8 years

What would you say to people worried about stoma surgery?

Having a stoma isn’t easy but for those who are contemplating the surgery or fearing it, I would advise them to simply weigh the pros and cons. Having a quality of life and drastically reducing symptoms were most important to me. Never having to worry about where the nearest bathroom was or having all the pain and anxiety I had prior to surgery was well worth the life changing option of stoma surgery. It doesn't define me or stop me from dating, from being active, or from living life to the fullest. Having an ostomy showed me how trivial most day to day stressors really are. I survive and thrive with an ostomy. A bad day at work doesn't faze me because I've experienced much bigger things in life, and if an ostomy isn't going to stop me, why should a little rain.

Ryan, 38
Living with a stoma for 19 years

 

Definitely try not to overthink. If you’re at the stage where realistically the only way of relieving your symptoms, whether that be temporary or permanent, is to have major surgery then this is going to be for the better. It doesn’t change much about your life and, like most people say, the impact it does have is usually positive.

Jack, 26
Living with a stoma for 7 years

I hope this has helped to hear from these men’s experiences of life with a stoma and you realise it’s okay to feel a certain way about it and that it will get better. Remember, you are alive because of that little piece of your intestine on the outside of your belly.

Natalie-Amber wants you to remember that 'everybody is beautiful'. Follow her @natalie_amber1 and the men featured are happy to be contacted on their handles below.

@crohnspool - @rvanvoorhis

@chronically.fit - @keiththom2014

@muneeb_ibd - @ostomyjack

@crohns_come_back_kid