Figure 1. IBD patients can experience very different outcomes despite rpesenting with similar symptoms and histories, as demonstrated in these real life case studies. Prognostic testing could help identify which IBD patients will experience more severe disease, allowing clinicians to select the most appropriate treatments for every individual.
In most cases, people diagnosed with IBD are put on the same drugs at the start. That means steroids and wait to see what happens in the first instance. People get progressed through a series of treatments until one sticks. It is not uncommon to hear from those with Crohn’s disease or ulcerative colitis that they have spent months, sometimes even years, just going from one medication option to the next. Treatments are not currently tailored to the individual, which means it’s very much trial and error. In some cases, this results in needing surgery because their disease continued to progress because the treatments weren’t working.
I’ve personally had my own experience of being stuck in this scenario, waiting for a treatment to help alleviate my symptoms, when I developed pouchitis in my newly formed J-pouch. Treatments can take from as little as a few days to up to three months to begin having any effect. So, I would spend 3 months on a treatment before my consultant would agree that it was not working, and then it would be time to try the next one. This happened over and over again, to me, and to many others. Meanwhile, we are having to deal with all of the nasty side effects, the impact IBD has on our lives, and getting no benefits! I was annoyed that the whole time I was moving from one treatment to another, my health was declining further. I felt like I was missing out on life.
A prognostic test that leads to more patients being given the right drug at the right time would mean fewer people stuck in the unpleasant cycle of treatment escalation.
Not knowing how your disease will progress adds a load of extra anxiety on top of what is already a really difficult disease. In my case, unusually, I’d had symptoms for just two weeks before going to A&E. I was admitted for acute dehydration and diagnosed the same day during a colonoscopy. Treatment started immediately, but I had to have emergency surgery within a week to remove my colon because it had progressed so rapidly.
Although my experience happened in fast forward, most people who get an IBD diagnosis aren’t prepared for what the future could hold, even if it will take a bit longer to get there. On the day I was diagnosed, I was given a booklet, which basically told me that with the right medications, and possibly a few dietary changes, I would be “back to normal” and able to go about my life as I had before.
I do understand that presenting a worst-case scenario to someone who has only just been diagnosed could be scary. Personally, I’d rather have had some idea of what life could be like. I would like to have been able to prepare myself a little. Such a whirlwind few weeks had a really negative impact on my mental health.
The impact of a long flare
Inflammatory Bowel Disease can lead to scarring in the intestine, which can cause its own issues; such as malnutrition, strictures, and functional problems.
Many of us have to take time off work because we’re in a flare, resulting in a loss of earnings and causing additional stress. Stress is one of those things that many people with Crohn’s disease and ulcerative colitis believe triggers flares for them. It feels like you’re stuck in a vicious cyclone, and you don’t know whether you will reach the bottom at some point and float gently to the ground, or whether you’re going to spat out at full speed.
Relationships can suffer because we’re not well enough to go out and be social. Then our mental health suffers because we feel frustrated and isolated.
How could early prognosis help?
I think that an early prognosis and knowing which treatment route to take early on could potentially mean that we don’t have to endure all of the stress, anger and frustration, that comes with recurrent flares. It could also mean that we’re already aware that surgery may be our only option in the long run and being able to prepare for that and ask the community questions before it happens can make a huge difference to coping with it.
I was so annoyed that “finding the right medication”, really wasn’t as simple as that initial booklet had made it sound. If I had known how serious things could get, I could have prepared better. I could have looked for support. Perhaps an early prognosis could even lead more to tailored information!
Maybe we can’t always predict what life has in store for us, but wouldn’t it be easier if we could?