When they tell you that you have an incurable condition, the furthest thing from your mind is the term “remission”. I associated remission with any condition that was treatable by means of a cure. However, you can find a path to remission with Crohn’s Disease. Anti TNF medications – Remicade and Humira – have the sole purpose of “achieving and maintaining remission”. If they claim that as their purpose in the medical field, why is remission such a hard thing to achieve?
It mostly comes down to the fact that every case of Crohn’s disease is different. Not every patient’s presents or reacts the way in which a GI doctor would typical expect them to. I certainly didn’t – I didn’t expect Pentasa or Azathioprine to not give me any relief, nor did I believe the Humira would work as well as it has done. Despite this very obvious and well accepted fact, the British Society of Gastroenterologists (BSG) and the National Institute of Clinical Excellence (NICE) promote medications with the purpose of remission for that exact reason: Patients want to achieve remission.
Is it possible? How is remission actually measured?
The severity of your condition is dependent on the Crohns Disease Activity Index (CDAI) or the even the Harvey Bradshaw Index; both of which explain and indicate which factors affects your disease. Things such as bowel movements, abdominal pain and mass, general well being and presence of complications are taking into account and score is given. Remission is defined as being between “the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity”. Though, I’m pretty sure most Crohn’s patients can testify to the fact that there is never a period of time where nothing is ever wrong. Due to everything occurring inside the body because of Crohn’s Disease itself, let alone the medication side effects, there will always be something. Even just plain old fatigue; CDAI and HBI do not consider that.
So what does remission mean to us, as patients?
For me, I would like remission to be well without the need of medications. Sadly, that statement in itself means I will never be in remission. How my doctor can suggest that I’m in remission whilst still on Humira is mind boggling. I will always be battling something, be in Crohn’s itself or something related to it – anaemia, vitamin D deficiency, arthritis, dietary constraints and complications – I won’t ever return to the way I was. Maybe, that is the purpose of the activity index, to be something measurable, a rough guess, to where you was and where you are.
To others, remission is being able to maintain a good lifestyle and be 90% sure of keeping the plans that you make. Finding that balance changes with every new symptoms and possible medication. The psychological impact of constantly being on top of everything, medical wise, is draining, and it is tough to keep yourself out of a downward spiral, some times. I admire and commend the patients who can maintain a good life – under their own definition – without taking medication. However, for most, medication is keeping the disease at bay, under control and in a state in inactivity. The flux of this – the one pitfall I find most difficult to explain and understand myself – is the always sudden change of activity Crohn’s can take despite the medications. We see and hear of many people who deal will for a while and then the drug will – for almost always no apparent reason – fail.
“Remission” as term is widely used in conditions where it quite easy – this being defined by the information we are fed by the literature – to remove the condition from the body – surgery and therapy afterwards, most commonly – , this cannot be done successfully with Crohn’s Disease. It is an inherently difficult disease, where its potential return is likely. I am in no way suggesting that cancers, for example, cannot return, but the maintenance of those disease means that remission can be used here without question or confusion. Most would find comparing cancer and Crohn’s Disease wrong and possibly offensive, but it is quite clear that remission is a term that GI doctors like to use to describe what is clearly a symptom free period.