Mental health support following ostomy surgery

Accessing mental health support following ostomy surgery

This blog is about my experience of trying to access help for depression and anxiety caused by trauma.

When I had my ileostomy way back in 1988, it gave me my life back.  I suffered no psychological effects other than feeling grateful to be well again.  Inflammatory bowel disease had blighted my life for so many years, getting rid of that colon was no loss and having a stoma was a small price I was more than happy to pay.

Spin forward almost 30 years to 2015 when a difficult hysterectomy left me with an enterocutaneous fistula (ECF). This was a devastating and completely unexpected turn of events.  The hysterectomy was strongly recommended by my new surgeon owing to a suspect mass (which turned out to be nothing ). I was told the surgery would be difficult owing to adhesions caused by previous surgeries and a long history of severe endometriosis, but I never for one minute expected the outcome I had. Despite having a fairly good insight into health matters, I didn’t even know what a fistula was – The hospital doctors were vague initially, but reality was slowly dawning. I was told I’d be in hospital for several months, may never eat or drink again and may have to be permanently vein fed.  A few days ago, I was perfectly well, how could this happen. I went into complete shock and disbelief.

In the years prior to the surgery I had repeatedly said how frozen my pelvis was because of my surgical history but I was assured it was doable. My shock was closely followed by anger, devastation – I felt somehow bereft and very afraid - in fact every possible emotion ran through my brain during that long three-month hospital stay. Three months of praying, hoping, watching and waiting whilst things settled a bit but not much. I was vein fed as they said to rest the bowel and I really struggled with that plus It didn’t heal. My fistula was here to stay, I hated it and still do - It’s like a grumpy, unpredictable, nasty, troll that lives inside you causing absolute havoc and mayhem on a daily basis.  It’s also saving my life. 

Nearly four years in I’m still pretty much in the same boat as far as the fistula goes, an attempted repair nearly killed me and so I have to manage it which is not easy. Three stoma bags and chronic infections do not make for an easy life.  Plus of course the ripple effect – careers gone, relationships strained, big life changes - I became very depressed – a deep sadness encompassed me daily.  I so missed the old me - the wife, mother, sister, daughter, aunty, and most recently nanna that I wanted to be, had gone - I felt robbed and cheated out of any kind of future. I became seriously depressed and my GP referred me for support which was and is a very frustrating journey. Not only did I have to come to terms with the fact that if surgery goes wrong,  sometimes the bad outcomes cannot be fixed.  You suddenly feel invisible somehow as door after door closes.  I felt (feel) like Mrs. Nobody as if I should hide away and stay on the proverbial scrap heap.   

Eventually I received the first of many assessments by the mental health professionals. Did I have depression as my GP thought or was it PTSD? What type of therapy did I need – was it CBT, counselling, talking therapy or something more specialised. As each professional listened and promised to help, I seem to get knocked back as the inevitable letter arrived saying I’d been discharged and referred to yet another department or speciality. Primary Care, Community Care, Therapeutic Day Care, Pain clinics etc – all new to me yet it seemed none of them wanted to take me on.  

After about a year of this, I was referred to Psychology, as they had decided I had PTSD.  So, I went to my first appointment of EMDR which stands for Eye Movement Desensitisation and Reprocessing. The theory is when your traumatised by something your brain almost becomes ‘frozen’ and you get stuck in that negative mindset.  EMDR is supposed to release you from that mindset so that you can think more rationally about things and they don’t seem as much of a threat.  Problem in my case was the threat is still there as I live with the fistula, it hasn’t gone, and I see it and have to deal with the physical and psychological aspects of it every day.

I had one session of EMDR which consisted of me holding two clickers, one in each hand whilst the therapist twiddled with a machine which clicked left and then right.  She asked a few questions like ‘ what was I thinking’ and invariably I was thinking really normal things like I had to remember to get cat food or the like, it all seemed rather pointless and was totally ineffective for me, I’m sorry to say.

The next step was Cognitive behavioural therapy (CBT) is a type of talking treatment which focuses on how your thoughts, beliefs and attitudes affect your feelings and behaviour, and teaches you coping skills for dealing with different situations.  I found the type of CBT I was offered, very restrictive.  I wasn’t allowed to talk about the trauma and the repercussions thereof - the discussion was based solely around a chosen topic, in my case ‘feeling over responsible’.  I found it harsh and quite upsetting to be honest.  Every time the conversation drifted into how I was actually feeling I was told to focus on the topic.  I didn’t find it helpful and left the sessions feeling more confused and more isolated. 

I’m not sure where I go next, maybe this is it and I will just have to cope the best I can. Catastrophic, life changing surgical complications are thankfully quite rare but that doesn’t help me and my family who live with the repercussions every day.   I am however fortunate to have some support from family and friends who carried me through the black days,  it must be truly awful for those who don’t have that support because my experience of accessing any form of help for this type of condition, virtually non existent.