Does Remission Really Mean Symptom Free? Not for many of us...

Does Remission Really Mean Symptom Free? Not for many of us…

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 After all, if blood tests, scopes and MRIs declare our disease is no longer active then surely science knows best?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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • jjudjr
    3 months ago

    I’ve had UC diagnosed for 17 years, but actually longer than that with active symptoms. I have also experienced remission for long periods of time. In the neighborhood of 5 years at a time. Now during those periods of remission, I wouldn’t say I was symptom free, but I was sustaining my weight and generally feeling good. I also have joint pain, but that’s due to my Ankylosing Spondylitis. Yes, two auto-immune disorders. Flare ups, in my experience and for me have everything to do with what I eat. So this means I stay away from all nuts, corn, beans, milk for the most part, ice cream of any kind, sugar (no sweets or candy), muffins, sweet breads, and cakes. I also keep potatoes out of my diet. I don’t drink soft drinks or juice of any kind. I stay with water, coffee in the morning (using a non dairy creamer) and an occasional beer on the weekends. I also do not smoke or chew tobacco. All this makes a huge difference to keep flare ups at bay and live normally. It’s not a silver bullet by any means, but provides me with ninety percent relieve.

  • thedancingcrohnie moderator
    3 months ago

    I don’t think we expect too much to feel completely well when in remission. At least for me, that’s how it is presented. Remission = feeling better with no symptoms.

    It is hard when you get into remission and you still feel awful. Perhaps the word needs to change? Or our doctors need to educate us more on what they mean when they say “remission.”

    Always dancing,
    Elizabeth (team member)

  • GabesMom
    11 months ago

    Thank you for this post. It’s more helpful to hear this from ppl with Crohn’s than the GI repeating that remission has been achieved. My son is in remission from his severe Crohn’s in his ilium thanks to Remicade. His scopes looked clean once he reached remission, no detectable scarring. Yet he still has pain and bloating, misses a lot of school. Initially we took him to urgent care a couple times just to have tests show there is no detectable problem. And just like the author says, his Ped GI diagnosed him with IBS as the “cause” and suggested it was phantom pain from him being used to being in pain. The pain feels very real to my son. We have been able to trace a few episodes to trigger foods, and we are learning as ego, I understand different ppl react to different foods – so far his are spice, pork, him deciding to fast on his own then abruptly go off the fast. But he does still often have general pain even absent triggers. We now have a protocol when he has pain that we put together – dicyclamine, tylenol, CBD oil, lots of water, gas pills. He needs to rest and be comfortable or distracted while his body metabolizes the trigger food over 48-72 hours. For the general pain and trigger responses, I have read about chronic pain and he has a meditation tape, has gone to hypnotherapy (I think this has helped the most!!!) and he goes to a physical therapist/massage therapist/accupressure healer. He is getting incrementally better at coping with the chronic pain and occasional triggers. Love, strength and healing to you all. Gabe’s Mom.

  • susiejuno
    11 months ago

    I have been told that my Crohn’s is not active but now that true remission but am told I have IBS and Celiac disease. I do not believe re mission ever happens at least not for me. I also had to have an artificial hip due to avascular necrosis and have a lot of degenerative arthritis which I think came from all the steroids I have had through the years.

  • Robinlynn56
    11 months ago

    Remission for me has been a much less severe condition. I do still have bloating, pain and urgency, but few and far between. For me, I have scar tissue that has caused narrowing in my small intestine. So although I do not have activity and inflammation, I have symptoms due to the narrowing. I am having a colonoscopy with dilation in 2 weeks. My doctor hopes to open up the narrowing some. The risk of surgery is looming though, and I am having the procedure at the hospital just in case. My feeling is to just have the narrowed section taken out. I’m am tired of not being able to eat certain foods like corn, nuts salad and popcorn due to the risk of a blockage. And a low residue diet is so so old. Any thoughts?

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