Most cases of Inflammatory Bowel Disease (IBD) begin before the age of 30, with the illness often starting in young adulthood. 20-30% of all patients with Crohn’s Disease (CD) or Ulcerative Colitis (UC) are diagnosed before age 20. There is then a second peak of new cases occurring between ages 60 and 80.
The teenage and early adult years are years of substantial emotional change and challenge. Even without an illness like IBD, adolescence is a complicated time in our life for most of us.
Research from around the world shows that around 1 in 4 patients with IBD (both CD and Ulcerative Colitis) can probably be diagnosed as suffering at some stage from anxiety or depression, and about 1 in 2 patients “have some features of anxiety or depression”, but not severe enough to fulfil the conditions for a definite diagnosis.
IBD can clearly lead certain patients to becoming depressed/or anxious. Other psychological syndromes or symptoms associated with IBD can include:
Phobias (e.g. needle phobia, fear of stomas, hospital phobia)
Post-traumatic stress disorder (PTSD) (e.g. following particularly traumatic periods in hospital)
Eating disorders (including a dangerous combination of CD and anorexia, with both illnesses contributing to weight loss)
Obsessive-compulsive symptoms
Addictions to pain killers which can become habit-forming
In addition, due to the complicated and intimate nature of the illness, the following “developmental” issues (which all humans have to navigate) may have an additional layer of complexity in patients with IBD:
Anxieties to do with separation from one’s family,
Anxieties to do with establishing intimate relationships, sexual anxieties and body image anxieties.
Not all patients with IBD require psychological support from a professional. Many cope very well with support from a combination of family, friends, partners, and colleagues at work, as well as the support offered by professionals such as the GP, hospital doctors, IBD support nurse, dietician, and stoma nurse (where relevant).
However many patients do benefit from psychological therapy, with regard to their mood and mental state, and in some cases with regard to the disease activity itself. This is not always easily available in the UK, and the provision of psychological services, especially specialised services for patients with IBD, is patchy.
So, for those who feel that they DO require something extra, the options are as follows:
NHS Help
The first port of call often is the GP. He/she may be able to offer you some support or counselling in the GP surgery, with a counsellor or primary care psychologist attached to the practice.
The GP may also suggest tablets – usually an anti-depressant. You should be aware both of the possible benefits of such tablets, and of their potential side effects. On occasion they can lift your mood and reduce anxiety. However, they are not a magic solution to all the difficulties, and cannot solve some of the more complex issues and anxieties raised by the disease.
Private options
If you choose to access private treatment (either you are medically insured or you can self-fund), it is possible you will choose to go to a private practitioner for psychological help. Your GP or Gastroenterologist may know of experienced practitioners. Or you could use a reputable organisation (see below). These are professional organisations that require their members to work according to professional and ethical standards, and you could use these as a starting point. .
For psychoanalytic psychotherapy, use a practitioner recommended by the British Psychoanalytic Council (BPC) or UK Council for Psychotherapy (UKCP).
For BPC use http://www.psychoanalytic-council.org/main/
For UKCP use http://www.psychotherapy.org.uk
For Cognitive Behavioural Therapy, you could find a chartered psychologist through the BPS (British Psychological Society) http://www.bps.org.uk , or BABCP http://www.babcp.com
Voluntary Sector organisations linked with IBD
CCUK (http://www.crohnsandcolitis.org.uk) is a large and very well-known organisation which brings together people of all ages who have been diagnosed with IBD, their families and the health professionals involved in their care.
Linked to religion
You may also find that a voluntary sector organisation based in your local borough offers psychological help – this could be religious based e.g.
Raphael (based in Stanmore) http://raphaeljewishcounselling.org/
Talking Matters (Stamford Hill) (see http://jewishmentalhealth.info/category/individual)
Tikvah (Manchester) http://www.tikvahcounselling.com
Voluntary sector organisations not linked to illness or religion
MIND (http://www.mind.org.uk/)
Types of psychological therapy
There are many types of therapy, and this can be quite confusing. Some are for a few sessions only, other last any months. A crucial ingredient in any successful therapy is the “connection” between you and you therapist. Do you feel he/she really “gets” you, understands your issues and what is troubling you?
CBT
Some patients are treated by focussed therapies, which focus on their beliefs and behaviours. This is called Cognitive Behavioural Therapy (CBT), and is often recommended especially if there is a phobia, high degrees of panic and anxiety or depression involved.
Couple and family therapy
Sometimes the problems are such that relationships are threatened, be they in a couple or in a family. Then, in some cases this is best treated as part of their family or as a couple.
Psychoanalytic psychotherapy
Sometimes the issues are very longstanding; then you may require a longer term therapy to try to help you explore the roots of your problems, and how the disease interacts with your early years, your personality and your families of origin. This therapy gets you to understand your “defence mechanisms” i.e. the typical way you may deal with anxiety e.g. by denial, or blaming others, or blaming oneself excessively. It is less focussed on techniques than CBT, and tries to bring to the surface matters which are hidden in your unconscious.
Group therapy
Others are helped by being in a group with other IBD patients or more commonly with others suffering from other problems, but not necessarily IBD.
EMDR is a treatment used to work with patients who are traumatised, and suffering from PTSD. Not very available in the UK yet, it is recommended in NICE guidelines for PTSD.
E-therapies
There are increasing numbers of treatments using internet, chatrooms, web-based forums etc. Some of these are being piloted by psychology and psychotherapy organizations, and may well prove to a useful resource for patients with IBD.
Finally, if you are struggling with your emotions and the impact of the disease on your quality of life, your relationships and your mood, you are not alone. There is expertise out there, there are others who have struggled with these issues before and have been helped. Ask for help early rather than struggling on your own!
Disclaimer: I (JS) cannot personally recommend or guarantee any of the organisations mentioned above. These are some of the options available to you, some are well-known to me personally, others just by reputation. There are undoubtedly many other good resources in the UK not mentioned in the article above. These are just a few examples.