Remission. It’s a word we read about often in relation to inflammatory bowel disease. The light at the end of our tunnel. The pot of gold at the end of the rainbow. The promise of getting our lives ‘back to normal.’ There’s no denying that achieving long-term remission is the aim of any IBD patient, but let’s talk about something that seems to be becoming increasingly common. The moment our doctor tells us we’ve finally reached remission and we actually feel…well, still pretty awful actually.
It’s not supposed to happen. After all, if blood tests, scopes and MRIs declare our disease is no longer active then surely science knows best? But this year, I’ve received lots of messages asking me:
‘What should remission actually feel like?’
Patients are led to believe they should feel 100% well but many of are still feeling tired, in pain and still rushing to the bathroom – leading us think: Is this really my life in remission? Will I never get truly better?
After being inundated with requests to somehow universally define remission, I felt out of my depth. So a few months ago on my own blog I decided to ask my readers the same question and share their experiences of what remission meant to them. Don’t get me wrong, it wasn’t a scientific study, but I thought it would be useful to try to get a wider picture for us to relate to. Depressingly, when collating the results of the survey, I noticed only 9.2% of the 250 people who shared their experiences felt they were 100% symptom-free when in remission (you can read the full blog post on the results of my reader survey here)
For the other 90.8%, symptoms (to varying degrees) were still an issue. The majority struggled with fatigue but bloating, loose stools, stomach pain and joint issues were also a problem for many. But why do so many of us still experience these when our clinical markers say differently?
If you ask your doctor, they might say it’s simply been downgraded to ‘IBS’. IBS, or Irritable Bowel Syndrome as it’s known in full, is essentially a condition of exclusion; so it would make sense that when there’s no sign of IBD, IBS could be the cause instead.
While it might be reassuring to know it’s not a flare, telling us that IBS is causing our recurrent symptoms isn’t particularly helpful
There are so many factors (from stress to diet and exercise) that play a part in IBS and our digestion in general. Many people with IBD may find they can’t tolerate certain foods or need to stick to their yoga routine, even when they haven’t had a flare-up for years. These types of symptoms can, therefore, be confusing to manage, especially when meds aren’t usually prescribed by doctors without evidence of inflammation. It’s all very well telling us we’re still in remission, but the symptoms we’re left with are still just as real.
It’s also important to note that sometimes clinical markers can be wrong and offer a false sense of remission; especially blood tests (a small minority of people do get normal blood tests despite flaring). So if you truly do feel awful and are being told you are in remission, it’s really important you get it ruled out with a scope and MRI too. Remember, if you have one autoimmune disease, you’re more likely to get another, so it’s important you feel your symptoms are properly investigated.
I’d love to hear your experiences of this conundrum.
Are we expecting too much to feel completely well when our IBD isn’t active? Or are doctors placing too much emphasis on the numbers on the screen without listening to the patient in front of them? In a disease that varies so much in terms of presentation and severity, I guess it’s only natural that the concept of ‘remission’ also varies so much between us patients too.