Remission - Definition, Positives and Challenges
I had an interesting chat with a client in my clinic the other day about remission which led me to write this blog.
When we have IBD remission is always the goal, it feels like the destination we are constantly striving to get to but sometimes, like in a bad dream, we keep getting diverted. When we do finally get there, rather than being able to relax, we often find ourselves still dealing with physical, mental and social challenges.
In this blog I wanted to explore more about remission and the challenges we often face in remission with IBD as I feel this isn’t something that’s talked about enough.
What is the definition of remission?
There are different types of remission in IBD, these include (1):
Clinical remission: reduced or complete absence of symptoms of IBD but inflammation may still be present.
Biochemical remission: Laboratory tests show no signs of IBD. Most common monitoring markers for inflammation are CRP (blood test) and calprotectin (stool test).
Endoscopic remission: no inflammation seen in the lining of the intestines during a colonoscopy, endoscopy, or a sigmoidoscopy.
Histologic remission: a biopsy is taken from the lining of the bowel to be examined and no inflammation is seen.
Surgical remission: surgical removal of the inflamed part of the intestines. There are different types of surgeries and varying lengths of bowel may be removed depending on how extensive the inflammation is and whether you have CD or UC.
Clinical remission used to be the primary target in IBD but in recent years this has changed. Now achieving clinical and endoscopic remission or mucosal healing (lining of the intestine) is often the target. Mucosal healing is associated with lower relapse (flare) rates, lower hospitalisation rates, less bowel damage (fistulas) and reduced need for surgery (2). In UC, mucosal healing has also been associated with a lower risk of colorectal cancer (3).
Although there is no world recognised definition of remission in IBD, more recently the following definitions have been suggested;
For Ulcerative Colitis, remission can be defined as having a normal number of daily bowel movements with no rectal bleeding and normal or inactive colitis on endoscopy (4).
For CD, remission implies steroid free clinical remission and evidence of mucosal and fistula healing on endoscopy. There are also various indexes that can be used to describe remission in CD (CD activity index (CDAI) <150, or a Harvey–Bradshaw Index <4) (5,6).
What are the positives when we achieve remission in IBD?
The positive aspects of remission are endless. A few of these I could think of are; it enables us to go back to living a more normal life, to go out without fear of needing the loo, to see friends and family again if we have been too ill and fatigued to go out during our flares, going back to school and work properly again, and it enables us to tolerate more foods and eat the foods we love again.
What are the challenges people with IBD face when in remission?
The evidence suggests these include, but are not limited to, education and employment concerns, psychological issues, nutrition, fertility, infections and ongoing symptoms, and problems related to health insurance (in the US) (7).
Work and Education Concerns
Living with IBD can mean we may have to take time off work or school if we are unwell or to attend appointments for surveillance or treatment. This can impact our schoolwork, our achievements at work and promotions. Talking to new employers and colleagues about our IBD can sometimes feel like a daunting prospect and may be the reason why, according to the research, many people with IBD stay in similar positions at the same company (8).
Mental Health and Anxiety
There is a high prevalence of symptoms of anxiety and depression. The figures are higher during relapse than in remission but still (9);
up to a third of patients are affected by anxiety symptoms
a quarter of people with IBD are affected by depression symptoms
We often think when we reach remission, we will feel relieved and not worry anymore but the reality is we may still worry when the next flare up might happen and be dealing with anxiety and depression on a daily basis.
Sexual Dysfunction and Fertility
In some cases, IBD may result in sexual dysfunction and impaired fertility; however, these are topics that are rarely discussed.
Sexual dysfunction in people with IBD has been associated with body image and sexuality issues, the use of corticosteroids, the use of biological agents, and depression (7).
Issues with fertility can arise from active inflammation, poor nutrition, medication, and surgery. The good news is that people with IBD who are in remission do not have decreased fertility as compared with the general population, but I know this is still a worry for so many people with IBD (7).
Extra intestinal manifestations (EIM’s)
These are symptoms that people with IBD experience outside the gut and you can read more about them here.
Around 43% of CD patients and 31% of UC patients experience extra symptoms outside their intestines, with more women (50%) experiencing these compared to men (34%).
Common EIM’s are bone issues, joint pains and skin problems. In many cases EIM’s improve in remission but some people still experience them even when their IBD is under control (10).
Nutrition
People with IBD are at risk of nutrient deficiencies. This can be due to poor dietary intake and food avoidance due to symptoms or reduced absorption of nutrients (usually in Crohn’s Disease).
Common vitamin and mineral deficiencies are iron, vitamin D, vitamin B12, folate, niacin, thiamine, particularly for those with CD, and these deficiencies can present in both active disease and remission (11).
It has been suggested that all IBD patients who are in remission, should have an annual review and basic information recorded. This may be carried out in a hospital or community clinic, or by telephone follow-up, and should be undertaken by a healthcare professional with recognised competence in IBD, where risk of nutrient deficiency can be assessed (12). However, in practice I see that this does not often happen.
Ongoing focus on optimum nutritional intake is vitally important to reduce the risk of deficiency and to ensure the best quality of life in remission. Supporting our nutrient intake and overall health through a healthy balanced diet may help us support our microbiome, gut and immune health, help prevent relapses in disease, and reduce our overall disease risk.
Take Aways
Remission in IBD is the goal but very few people discuss what its like when you get there. As well as relief and celebration, apprehension and anxiety can still linger. There are also other, more long term, implications that IBD can have on our everyday life in remission both psychological and physical. Being kind and compassionate towards ourselves in remission is important and continuing to support our mental and physical health so we can have the best quality of life with IBD.
If you need help with your IBD, in a flare or in remission, lets have a chat. You can book a (free) 20 minute no obligation phone call with me to find out how I can help you. During this call I love to hear about you; your journey, your struggles, your life, and we can chat about the best route forward for you.
If that sounds interesting click here so you can find a time that works for you.
References
Zallot, C., Peyrin-Biroulet, L. Deep Remission in Inflammatory Bowel Disease: Looking Beyond Symptoms. Curr Gastroenterol Rep 15, 315 (2013). https://doi.org/10.1007/s11894-013-0315-7
Solem CA, Loftus Jr EV, Tremaine WJ, et al. Correlation of C-reactive protein with clinical, endoscopic, histologic, and radiographic activity in inflammatory bowel disease. Inflamm Bowel Dis. 2005;11:707–12
Peyrin-Biroulet L, Ferrante M, Magro F, et al. Results from the 2nd scientific workshop of the ECCO. I: impact of mucosal healing on the course of inflammatory bowel disease. J Crohns Colitis. 2011;5:477–83.
Schroeder KW, Tremaine WJ, Ilstrup DM. Coated oral 5-aminosalicylic acid therapy for mildly to moderately active ulcerative colitis. A randomized study. N Engl J Med 1987;317:1625–9.
Best WR, Becktel JM, Singleton JW, et al. Development of a Crohn's disease activity index. National Cooperative Crohn's Disease Study. Gastroenterology 1976;70:439–44.
Harvey R, Bradshaw JM. A simple index of Crohn's-disease activity. Lancet 1980;8:514.
Raghu Subramanian, C., & Triadafilopoulos, G. (2016). Care of inflammatory bowel disease patients in remission. Gastroenterology report, 4(4), 261–271. https://doi.org/10.1093/gastro/gow032
Marri SR, Buchman AL. The education and employment status of patients with inflammatory bowel diseases. Inflamm Bowel Dis 2005;11:171–7.
Barberio, B., Zamani, M., Black, C. J., Savarino, E. V. and Ford, A. C. (2021) Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel disease: a systematic review and meta-analysis, The Lancet Gastroenterology & Hepatology, 6 (5), pp. 359–370. DOI:10.1016/s2468-1253(21)00014-5.
Viola et al (2020) Extra-intestinal manifestations in inflammatory bowel disease. APMB. 108(1). https://cab.unime.it/journals/index.php/APMB/article/view/APMB.108.1.2020.SD1/pdf
Filippi J, Al-Jaouni R, Wiroth J, et al. Nutritional deficiencies in patients with Crohn’s disease in remission. Inflamm Bowel Dis 2006;12:185–91.
Mowat C, Cole A, Windsor A, et al Guidelines for the management of inflammatory bowel disease in adults. Gut 2011;60:571-607.