Staying Positive with IBD

How much credence do you put into the notion of maintaining a positive attitude?

I have been diagnosed for 19 years. Crohn's is a lifelong condition and therefore immediately after diagnosis, I recognised I needed to take very good care of myself, everyday. This awareness can best be summed up as an attitude of; "what I do today, affects my tomorrow" and has helped me make healthier choices throughout my life living with Crohn's. This approach to living with daily pain, discomfort and complex symptoms has also ensured that the rest of my body - which takes a great toll resulting from inflammation and long term malnutrition - has been able to carry me through some extremely damaging and dangerous complications including bowel and related surgeries. Having a positive attitude sometimes means recognising your are dealing with a condition that will take a lifetime to learn to manage, but acknowledging that the small things we do for ourselves, are at times, lifesaving and the best type of health agency you can do for yourself. If Crohn's is here to stay with me, I will adapt and adjust in unison with my body and always with my best interest at the core - take that Crohn's Disease. 

What do you do to get through the difficult days?

This is a tricky one as I have a subsection listed below "difficult days" and these range from;

So sick I'm admitted to hospital - then I knuckle down to a simple mantra - eat, sleep and rest and let the medics join in to help me get through.

Whilst in recovery from surgeries or admissions, again I extend my eat, sleep and rest to include move! It might only be to go to the toilet, kitchen or just to potter but I enjoy a bit of a dance so I tend to play a lot more music and shimmy whenever I can.

Feeling crappy is probably my most frequent difficult day and this usually includes my physical, emotional and mental health. My appetite might be poor (this is a big trigger for me) and so I rally my girls to add a little social interaction to the function of eating. These days are generally watered by tears and I might have a good cry, console myself with reassurance that it is okay to feel angry, sad, isolated or desperate for a life lost. After a good cry, a sullen or sunken vibe, I might play a song I love and try to have a dance to generate some more enjoyable feelings. As soon as I notice a shift in my emotional state, I take it as a sign to settle myself and recognise these feelings are fleeting and thank goodness, I am able to shift it, even if it is only a momentary shift! Physically, I might be affected by fatigue, deficiencies, nausea, pain or symptoms and then I try to respond appropriately with rest, organise a blood test and identify any basic issues with my Iron or Vitamin levels, take an anti-sickness or fast for a few hours, a pain killer or distraction to help me manage the pain and or try to speak with my IBD team to decipher the symptoms as expected, manageable or indicating further testing. For my mental health, I fundamentally accept the premise if my body is sick then my mind is affected too. This aspect of my difficult days is a toughie - my mental health is often an indicator of my physical being e.g delirium a mental state of euphoria and extreme fear, confusion and brain fog were symptoms easily mistaken for mental ill health when in fact they were signs of sepsis to recognising, my mental health is a sign I've been effected by my experiences and I've adapted with a self protecting cycle of untrue beliefs - in other words, when my body is ailing, my mind lets me know as it spirals in a loop of distressing thoughts; "I can't do this anymore", "the pain is too much", or "why me". These thought patterns now trigger in me a warning to investigate hidden signs of inflammation, vitamin or mineral deficiencies or just to take time to rest, to gently nudge the thoughts into a more self soothing cycle - "I need some professional assistance" "hey lady, you've done really well, keep going" to "time to seek some adjustment in my belief system". At my most severe point, antidepressants were issued as standard treatment - for when the body is depleted, so is our capacity to think rationally and this ultimately affects our ability to mentally carry a productive thought pattern and thus, feel able to function. This has been a very challenging and upsetting aspect to bowel disease as both mind and bowel are inextricably interlinked. 

I suppose rereading my answers, I have learnt to identify what ails me and if it needs medical intervention or a large dose of self care. This gives me a level of freedom from worry and helps me to keep doing me, when the better days come as they always do with this disease - thank goodness, I enjoy them and revel in the successes I have achieved to be in that place, at that moment in time! And, I never forget to praise and congratulate myself for being and doing me - regardless of the issues I face.

What is the driving force that keeps you moving forward?

Sheer bloody mindedness and a deep desire to live my life. I also know in my innate self that Crohn's is not only a serious threat to my health, but in the journey this disease brings, are lessons learnt that make me a fierce force for growth, navigating challenges and living vibrantly with less than you started out with! I always feel a great sense of hopefulness and betterment with each challenge I face and at my most frustrating and demanding points, I see, we are, afterall, only human and being gentle with myself, is my greatest defence against a disease we really are only just learning more about. The future of this disease will look different for others and where I once faced discrimination, sickness and being marginalised, others will be able to lessen its unfetted attack upon our vital organs, health and self to lead lives, not so drastically altered because we lacked the whole system of knowledge needed to medically manage this horrid disease. Take the very best of care of yourselves - its revolutionary! x