Why newly-diagnosed IBD patients NEED to be offered counselling

 

Trigger warning: This post references studies on anxiety, depression and suicide.

A while ago, I opened up a little bit more about my life living with Crohn’s Disease and anxiety. I have already talked about life living with Crohn’s Disease and anxiety but I made a short video about the key facts around IBD and anxiety; and spoke at length about my ongoing journey with health anxiety in particular. (which you can watch below-Should you wish to know exactly what my Birmingham accent sounds like, here is your chance!)

However, after making it; I felt as if it was only the tip of the iceberg. I had talked about my anxiety developing in the months and years after being diagnosed, but what if more help could have been given beforehand?

It got me thinking about my own experience when diagnosed. Even though it was at a private hospital (as I was living abroad), I was given many leaflets, told about the side-effects of a medication I would start and left with a bundle of prescriptions. It might have been a private room and a fancier hospital gown, but still, nobody talked about how I was coping and the huge impact this would have on my life mentally. 

Mental health+IBD: The facts

As always, I like the begin with some facts. The two I addressed in the above video were…

  • Having Crohn’s disease means you’re 50% more likely to develop anxiety.
  • There is a disparity between how we perceive our condition and our doctors. 40% of doctors treating a group of patients felt that their symptoms prevented them from a normal life-but more than 60% of those same patients did.

In 2013, it was reported only 24% of departments treating IBD had direct access to psychological care (source)

TRIGGER WARNING: SUICIDE… (Please be mindful)

After publishing my video, a psychotherapist who specialises in IBD (Tamara from Gut Feeling) got in touch and shared some information specifically with me about suicide and IBD. I don’t want to go into this at length as I know this can be triggering, but I feel it is something that is incredibly important to talk about in relation to why counselling needs to be offered.

One study concluded: “Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.” Whilst a Danish study suggested an increased rate of suicide amongst both UC and CD patients (here):

That should give some gravity as to what we are talking about here!

Your Experiences of Being Newly Diagnosed with IBD 

I REALLY don’t want this post to be ‘about me.’ Like I mentioned in the video, I completely appreciate that I was in a position to afford to pay for CBT but also that my mental health experiences aren’t as severe as others.

I asked some of my readers to share whether it was just me-and whether they were offered any mental health support when diagnosed. Here’s what they said:

Michael: I was diagnosed at 8 years old, and desperately needed some form of counselling. I received none as at the time they just didn’t connect the two in 1994, much less knew what the hell it was. I was constantly told I was wise beyond my years, but considering what I went through, and how my family was having such a terrible time at the time on their own, needless to say, I got some trauma that haunts me. Mainly me thinking everything is my fault. 

Samantha:  There is a huge disconnect. When I had my ileostomy, the surgeon insisted I tell him I’d be happy with my decision and not mad at him before he’d do it.  When I was diagnosed with breast cancer, I told them I was finding the experience traumatic- they didn’t just ignore my statement, it was clear they had no interest in treating it or even acknowledging it. PTSD is apparently a long-term consequence of chronic illness.When people aren’t well fed, don’t sleep, and are mediated – by some definitions, that would be torture, yet people who are sick are in that state and expected to make quality decisions about their care. Who can be right of mind/good emotional state under those conditions?

Anonymous: My team asked me if I wanted counselling before this pending surgery and I said yes but that was 3 months ago…. nothing has surfaced yet and it’s never been mentioned since. I don’t think surgeons or gastros get it as well or understand the trauma our bodies go through. Yes surgery and meds makes us well, yes our conscious mind logically agree, but it doesn’t mean our body and our subconscious mind just accepts it.

Sharon: Where to start about my initial diagnosis! being told I was doing it (being ill) to seek attention
My parents reading a 30 year out of date Encyclopedia that said regional ileitis (old term for Crohns) was psychosomatic
My GP saying you probably have colitis – there’s no cure for it so when I left the surgery I felt so ill i seriously considered suicide. It was 1980 so I am sure it’s not as bad these days. Online sources are a huge benefit now

Angela: No, I received none, and with hindsight, I think it would have definitely help me come to terms with it quicker. I literally thought I’d just been told at 22 that I was going to die and if I didn’t die, I was certainly going to have no ‘life’ and probably quite a miserable existence with a bag for company. Information was very limited and there was no Dr Google back then. (Good thing/bad thing?!)

Anna: There was no such thing as mental health when I was diagnosed. You were supposed to just get on with it. This, and the fact it took years to get a diagnosis, scarred me mentally. I had what was then referred to as a nervous breakdown and had Valium was given to me, which made things worse. Somehow, with the help of family and friends, I managed to get over it.But – ever since I have had episodes of crippling anxiety. I have now been diagnosed with Generalised Anxiety Disorder. Periodic CBT which doesn’t help. There is no effective treatment for mental health problems for people in our situation. No-one knows either who should be responsible for it! IBD nurses, doctor’s, GPs or mental health professionals!

Kelly: When I had my colonoscopy and was left traumatised because I was not expecting it to be so painful. I just wanted someone to talk to. When I rang the hospital I got snapped at and said do you want to complain. I said no I just want to know if it was normal for it to be so painful

Clare: 18months ago when I was in the middle of a significant flare I hit rock bottom emotionally & mentally. It was my support networks (family & friends) who supported me through this. Perhaps I didn’t ask for support from professionals because I was scared “stress or anxiety” known to my employers would impact my job! This is scary in itself that people are scared to ask for support & even if they did ask, may not receive it. 

As you can see, there’s a really mix of responses. Whilst some are from a long time ago (and we have made some strides in talking about mental health since then) they all highlight just how medical teams are not even considering the psychological impact of IBD.

Should everyone with IBD be offered counselling?

I know that ‘counselling for all!’ is a simplistic (and bloody expensive!) approach to the matter. Indeed, not everyone would feel comfortable with this- some might choose to ‘get on with it’ and others might not be in a position to talk about it until much later on. One of my readers Sophie pointed out: “I feel like I would have declined (counselling) at the point of diagnosis, but 2 years on almost to the day I feel I would definitely benefit. I think it’s definitely a great idea to offer it, but I would have been too pigheaded to accept until I’d learnt the hard way that it’s not just a case of some steroids and Azathioprine and all better again.” 

So actually, part of the issue is just making mental health part of the conversations altogether; and our doctors acknowledging that there will be some ups and downs on a journey rather than it being a simple solution. Mentioning support groups, talking therapies, online tools and acknowledging the risk of mental health issues during our FIRST appointments could make a huge difference: even it’s something that people don’t actually turn to until later on.

There are many other resources patients could be introduced to when diagnosed; such as online CBT tools, books on prescription or buddy schemes. Either way, I think this post demonstrates just how problematic things can get it if it’s not mentioned at all.

Useful Resources

A piece of paper with “mindfulness” written in cursive

I do hope you found this post useful -I’d love to hear your thoughts? Do you agree with me? Do you think mental health and IBD are extrinsically linked? Would you have liked to have been offered counselling when diagnosed?

 
 
 
 

2 Comments

  1. May 6, 2018 / 8:04 pm

    My sister has recently received 3 diagnoses, one on top of the other, and really needs therapy (her words) to help her get her head around the earth shattering impact it is having on her life. But her doctor has told her she won’t get free counselling unless she’s been sexually abused – that is the criteria in New Zealand (along with, I presume, self harming). Pretty backwards huh. Lowen @ http://livingpositivelywithdisability.com

  2. May 30, 2018 / 11:02 pm

    I was diagnosed with Crohns 7yrs ago.
    I didn’t feel it affected me in anyway. I just ‘got on with it’
    Tried numerous medications, that didn’t seem to make a difference.
    3 years in, the vaginal fistuals started. Numerous a&e trips and seton stitches put in place.
    After a MRI scan I was given an appointment to see a surgeon at my local hospital. All went well, and I was booked in to have my infected part of my bowel removed.
    Before I knew it the day of my surgery was here.
    Sitting on the ward feeling nervous and waiting for the surgeons team to come and see me, I started convincing myself that having this surgery will be the end of my pain, and I will start to get my life back on track.
    2 hours before my operation, the surgeon appeared with his team.
    He introduced himself, all nice and I was feeling alright. But what he said next I will never forget.
    In his words ‘basically I’ve looked at your MRI and with your other problems with fistuals, I’ve decided to give you a subtotal right hemocoltomy. So the nurse will measure you up for where you will have your bag. Ok? Ok right see you in theatre’
    And that was that!
    I was in shock, I was on my own apart from the IBD nurse who put a black X on my tummy. I was crying, trying to call my family.
    I briefly got spoken to about what having a stoma bag will mean, and that was it!
    I woke up back on the ward, and vaguely remember Drs and nurses seeing me.
    The next day I met my stoma nurse who asked me to try and get out of bed to empty my ‘bag for life’
    I refused. 2nd day I had to do what the nurse asked. To be fair she was very supportive.
    5 years down the line I’m just doing what I have to do regarding the bag. I have more bad days than good, what with leaking, infected skin, and it always seems to play up and leak when I’m on a rare night out. But what I do know I have never really come to terms with it. And it’s only in the feed months I have admitted to myself that it has completely messed me up mentally.
    It was just sprung on me, and I’ve been left to deal with it. But with the circumstances of how it was told to me without any prepping has definitely messed with my mental health.
    I will get my head round all this, I’m off to the Drs Friday to seek counselling
    Sorry for the long rant

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