‘A Stoma Patient’s Right To Die’ – The importance of emotional support within a patient’s stoma journey

You may, or may not, have seen the recent news last week regarding a male Inflammatory Bowel Disease patient, aged 34, at Barnsley hospital being given the right to die because he didn’t want to live with a permanent stoma bag.

Before I go any further with this blog post, I am going to say that I am in no way making this about me and taking anything away from the man’s struggles & the struggles of his loved ones having to see him get to this dark place in his life. I am merely expressing my opinion & in no way is my opinion fact. It is what I feel and I believe we should all have the right to express that in a safe place, just as the Barnsley Hospital patient did. Whether you’ve read the court hearing or not, or whether you’ve read any newspaper articles about it, there will be much more to this story which we aren’t told. I am more at a loss and extremely upset that I can’t help him & that nothing can be done to convince him to stay. I just hope he received the right emotional support & that all options were exhausted. To me, it really reiterates the point that stoma awareness and emotional stoma support for any stoma patient from the very beginning of their journey is so important and must be handled as correctly and sensitively as possible to minimise things like this happening as much as possible.

I felt, and still feel so strongly about this, that I posted two videos on my Instagram about this last week. Having had over a decade of being seriously poorly before my surgery, I can only imagine how much the man has struggled with having being so poorly for a similar amount of time too. I would like to now share them with you as they will tell you more about what we know about what happened and it will also show you the range of emotions I went through with it, as a stoma patient myself, in a very short time frame after learning of the news and the judge’s decision.

 

You can watch part 1 here

You can watch part 2 here

 

Since I recorded these videos, I have still felt some strong emotions & have found it hard to process. I have experienced negative comments off people, which I half expected unfortunately due to the nature of social media being so accessible. In the same breath, I have experienced social media being a force for good and have received many lovely comments, love and reassurance off many people.

Don’t believe everything you read in the news

As I mentioned at the beginning of this blog post, there will be elements to this story that we don’t know. On an emotional level as well we cannot fully appreciate what the man’s loved ones are going through right now. Even if we have lost someone close to us, the circumstances will not be exactly the same & we all grieve in different ways. It is important to remember that the impact of this decision at court will reach far & wide, as it has done already across social media.

I have seen a few newspaper articles doing the rounds on this tragic case. I have sadly had to remind myself that a lot of newspapers are opportunistic and will often take what is real and twist it to pull people in to read the article. One I saw in particular that I couldn’t believe my eyes with was that the man wanted to die because a colostomy bag would ruin his love life. I don’t really have the right words for this and it’s something that I feel quite angry and upset about, but for a start, they completely took what he said out of context as if that was the only reason he didn’t want to live with a stoma and two, they made a stoma out to be a death sentence.

Me post surgery (top left) and others from in hospital

The article made me and several others I’ve spoken to about it who have also had stoma surgery feel as if we should feel digusting and be okay with being stigmatised because we choose to live with a stoma bag. To take the man’s words out of context and try push the fact that a stoma bag means you’ll be unattractive & unable to date forever & take your independence away is beyond cruel & extremely insensitive.

I know people have faced negative comments from potential partners because of their bag and those comments can be so upsetting and hard to deal with, but a stoma bag does not make you unattractive, unlovable or disgusting. I know people who have turned those negative comments into a positive in the sense that if that’s the attitude of some other so called “human being” then is that someone you really want in your life?! Having a stoma bag almost does the hard work for you in the sense that it’ll filter out the shallow people in the dating scene.

Pretty much up to several months before I got with my current partner, I was scared to date anybody outside of the Bowel Disease and/or stoma world until about 4 years after my surgery and ironically, the worst comments I’ve had on my stoma bag were from someone else with Bowel Disease and a stoma. Go figure that one?! My current partner is very accepting & embraces my stoma & the life it has given me. He’s helped clean up accidents & he’s even worn a bag for a day to get a little feel of what the stoma life is like! Outside of the Bowel Disease world I’ve had the odd crude comment on dating apps about my bag, but nothing that I couldn’t shrug off easily. Most people are quite open-minded these days & hopefully the negative comments are hugely outweighed by the positive ones, if you sadly have to face the negative.

Personally, my stoma bag makes me feel more attractive and lovable than I did before that. It’s enabled me to put on weight, exercise, eat, fit into clothes that I love, have curves & go on dates to name a few things.

As I said in my videos, my stoma has not only saved my life…It has given me the ability to live my life & do things that I could have never dreamed of before surgery such as going on holiday and working with Comfizz (pictured below) ♥

Stoma stigma is something that probably sadly will never disappear completely, but minimising it as much as possible is something I am passionate about and will continue to work hard at whilst supporting as many people I can within their Bowel Disease and stoma journeys.