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What is expected when someone is in “remission”?

I was told by my doctor that I am in “remission.” I know this is a good thing to hear, but I am still experiencing symptoms on a daily basis and have had new symptoms. Does remission mean no active disease? Does a person experience symptoms during remission?



Community Answers

  1. Sara Ringer says:

    The above answer is good but also a bit inaccurate. “Clinical remission” is the absence of symptoms. It simply means that you are feeling well. The definition of clinical remission does not mean you necessarily have normalization of labs, or mucosal healing.

    In IBD there are several types of remission so I would first ask your doctor some questions. “What do you mean when you say I am in remission?”

    Then explain that you are still experiencing symptoms.

    Here are some things to help you understand remission more (just a few days ago I sat in on another session on remission that was given by one of the leading IBD specialists in the world at AIBD).

    Functional remission – What does remission mean to the patient? So it’s what the patient would like their quality of life to be. This is an important question that the doctors should be asking us. Maybe it’s to be able to get back to working full time, maybe it’s to be able to eat your favorite meals, maybe it’s to go to prom or to go out on dates and not worry.

    Clinical remission – The absence of symptoms. Want it to be that you feel perfect. That’s the goal. What is important to understand about clinical remission is that symptoms and disease often do not correlate. This means that a patient can still be experiencing symptoms but not have disease activity (active intestinal inflammation). OR the patient could have active intestinal inflammation but not be experiencing symptoms. This is why clinical remission is not enough. It’s also important that even if you feel well that you understand that inflammation could still be present and it needs to be stopped before it causes the damage we know it can – fistula, stricture, hospitalizations, surgery, disability. So having no symptoms is great but it’s only part of the goal. In the past clinical remission was all that doctors were shooting for until they figured out that mucosal healing was possible with the right treatments.

    Endoscopic remission – Means mucosal healing. This means that when you have a colonoscopy or other type of endoscopy that the bowel appears healed. This is very important because if there is active disease that inflammation leads to damage and the longer it is there the higher the risk for complications.

    Deep Remission – was first described after the approval of Humira in 2008. The goal of deep remission is that you have both clinical remission AND endoscopic remission. Heal the bowel and feel great and hopefully stay that way for a sustained period of time. The general definition is mucosal healing but deep remission can be defined by looking at other markers of inflammation – CRP, fecal calprotectin.

    Deeper Remission – Not a technical term because it hasn’t been defined yet but this would be all of the above PLUS your biopsies taken during a scope also look good. In a biopsy acute inflammation will show up in a biopsy as having a lot of white blood cells. Microscopic scaring on a biopsy is evidence of inflammation having been there for a longer time and creating more damage.

    Histologic remission – All of the above and that your biopsies look so good it looks like you’ve never had IBD to begin with. When this happened they used to think that they had taken the biopsies wrong or was sampled wrong but now they know it correlates with how long the patient has been in stable remission.

    With all that said the question is how do we get all patients to this point?

    So I would start off with asking your GI to define for you what he means by saying you are in remission. Then explain to him that you are still having symptoms so that you can work on figuring out why.

    As mentioned above your IBD could be in remission but your symptoms could be stemming from something else. One of those things is that many IBD patients also have IBS. So perhaps your symptoms are functional and you can work at finding something to help. That may mean altering your diet or something else.

    Patients should expect both clinical remission and mucosal healing. I wish you the best of luck in getting yourself to a place where you feel well and your disease is under good control

  2. Jenna Farmer moderator says:

    Hi Rebecca, congratulations- great to hear your doctor saying you’re in remission! When your doctor talks about remission, he usually means ‘clinical’ remission- this will mean your tests (whether they’re blood tests or camera tests) show you are in remission as the testing markers are all in the normal range. However, it’s very common for patients with IBD to feel poorly and still be ‘technically’ be in remission.

    Firstly, find out what tests your doctor is using. For example, some patients report their blood tests showing they’re in remission but they might not feel that way- and a further colonoscopy could show they were flaring all along. It’s thought up to a quarter (according to my doc, anyway) of us might not show flares in our blood tests alone- so I’d ask if you could perhaps do a faecal test too if you haven’t already- and of course it’s especially important to flag new symptoms too.

    If your doctor is confident you are indeed in remission, there are many reasons why you might be having symptoms. One is IBS- many IBD patients have IBS type symptoms when in remission. Their gut can still be ‘sensitive’ despite not being inflammed; or they might have developed intolerances, such as lactose intolerance. Remember, symptoms such as bloating and diarrhoea might not necessarily be due to disease activity but these kind of conditions instead.

    This is a topic I was particularly interested in, so I created my own survey about remission and what it really looks like for those of us with IBD. I’ll link the findings here: http://www.abalancedbelly.co.uk/can-still-symptoms-ibd-remission-results-survey/

    but to summarise…
    -Only 9.2% of the people who filled out my survey were 100% symptom-free in remission.
    -18.4% of people in remission still had loose stools a few times a week.
    -Over 81% of people still suffered with fatigue in remission.

    As a crohn’s sufferer myself, I actually found these results oddly reassuring. As you can see, it is normal to experience all kinds of symptoms when in remission. Whilst it would be nice to be completely 100% symptom-free, it can be reassuring to know that some symptoms do not necessarily mean your disease is active.

    I hope this is helpful. The first step should definitely be your doctor. However, as you live with the disease, you’ll hopefully be able to figure out what’s normal for you- both in remission and when flaring.

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