I was diagnosed with ulcerative colitis in March 2018, i.e. 27 months ago. The mention of “ulcerative colitis” to the average layperson doesn’t usually elicit much of a reaction, presumably because they don’t know what the term means (nor do I expect them to). Therefore, I often refer to my ulcerative colitis (UC) as a “lifelong gut problem” when speaking to laypersons.
In contrast, when I tell healthcare professionals, especially medical doctors, I have UC, their reaction is very different – usually some combination of shock, empathy and concern – probably because of a presumption my UC is severe or life-threatening. By virtue of my line of work, I run into many healthcare professionals, which, in turn, means I often have to clarify any misconceptions of UC and describe how the disease actually affects me.
In reality, the biggest issue I have with my UC is taking mesalazine (mesalamine; 5-aminosalicylate (5-ASA); brand name: Salofalk) three times a day, in particular remembering to take my mid-day dose. To solve this problem, I have the mid-day dose with my afternoon tea – swallowing two Salofalk tablets (total: 1 gram) just before I have German sourdough rye bread and a cup of coffee late afternoon is now part of my daily routine. My UC doesn’t otherwise impact my everyday life.
Nevertheless, it might be prudent to review my UC against established criteria.
Several indexes for assessing disease activity in UC are available, e.g.:
- Truelove and Witts’1 severity index
- Mayo Score2
- Seo index3
- Rachmilewitz index4
- Simple Clinical Colitis Activity index5
There is broad agreement among most of these clinical activity indexes, so it probably doesn’t matter which one we select.
I’ll first describe my disease in its current state, using the parameters used in these indexes, and other ones, as a guide.
Clinical Symptoms and Signs
I have very regular bowel movements – once a day, usually late morning, after breakfast. I don’t remember having any episode of urgency of defecation or loss of control in the last two years.
My stools have consistently been Type 4 on the Bristol stool scale, i.e. normal. I rarely have constipation, but if I do, it is almost always due to inadequate fluid intake or a recent change of diet. I haven’t had a single episode of diarrhoea since March 2018.
Presence of blood
I have not noticed any rectal bleeding since I started taking mesalazine in March 2018, i.e. more than two years ago.
About once a week, I experience colicky abdominal pain either in the right lower quadrant or the left side of my abdomen (but never both locations at the same time). The onset of the pain is always at bedtime or shortly after and seems to be associated with bloating and a small deviation from my usual diet in the previous 12 hours. The pain invariably subsides spontaneously over a few hours. I suspect this abdominal pain is related to irritable bowel syndrome, rather than UC.
Fatigue is a symptom I experience often and to varying degrees. The fatigue can be quite debilitating on the rare occasion. Episodes of fatigue can last from several hours to a few consecutive days, but never more than a week at a time. There are no obvious precipitating or exacerbating factors I have identified. Through experience, I have found that regular aerobic exercise, such as rowing, running, and cycling, help to reduce the frequency of episodes and also mitigate their severity. Exercise is like medicine for me – I just do it whether or not I’m in the mood for it. Other than my scheduled rest days, there are relatively few instances I don’t do my daily workout:
- I am feeling too fatigued (the commonest reason by far);
- Work or work-related travel does not allow it (sort of hard to work out if you’re sitting in an airport/plane/train/bus/cab for hours on end, check into a hotel past midnight and are expected to give a talk or attend a business meeting a few hours later);
- I am at a location where any form of workout, even running, is physically impossible; or
- Something I have prioritized over my workout, which I cannot attend to at a time before or after the period I would otherwise do my workout and I cannot (reasonably) fit my workout at any other time during the day. This happens extremely rarely – in a calendar year, I can count such occurrences on one hand.
My fatigue may be attributed to UC, irritable bowel syndrome, the medications I’m taking for these two conditions, or something else.
I have not had a fever for years, and certainly not since being diagnosed with UC.
My resting heart rate is between 45 and 50 beats per minute, probably a physiological bradycardia (slower than normal heart rate) induced by endurance exercise training. I’ve not had tachycardia (faster than normal heart rate) at rest in recent memory.
The four relevant blood tests are: hemoglobin (looking of anemia), erythrocyte sedimentation rate (ESR, a marker of inflammation) and C-reactive protein (CRP, another inflammatory marker), and serum albumin. These tests were last done, as part of a battery of tests, on April 17, 2020, i.e. about two months ago.
|April 17, 2020||Hemoglobin||13.6 g/dL||11.5–18.0|
|April 17, 2020||Erythrocyte sedimentation rate (ESR)||2 mm/hr||0–15|
|April 17, 2020||C-reactive protein (CRP)||<0.20 mg/dL||<0.5|
|April 17, 2020||Albumin||40 g/L||37–55|
My last colonoscopy was in February 2018, when my UC was diagnosed. I am due for a repeat colonoscopy in a couple of months – this should tell us if the distal proctitis, seen on colonoscopy two years ago, has resolved.
Truelove and Witts’ Severity Index
Based on the Truelove and Witts’ severity index, my UC disease severity would be categorized as mild. According to this index, the severity of UC can be classified as mild, moderate and severe; there is no category less severe than “mild.”
|Number of bowel movements per day||Fewer than 4|
|Blood in stools||No more than small amounts of blood|
|Pyrexia (temperature >37.8°C)||No|
|Pulse rate >90 beats per minute||No|
|Erythrocyte sedimentation rate (ESR) (mm/hr)||30 or below|
Partial Mayo Score for Ulcerative Colitis Activity
The partial Mayo score uses the three non-invasive components of the full Mayo Score, i.e. stool frequency, rectal bleeding, and physician’s global assessment, and excludes the score for the endoscopic findings.
|Physician’s global assessment||Normal||0|
|Partial Mayo score||0|
My partial Mayo score is 0. A score of <2, i.e. 0 or 1, is interpreted as “Remission”.
Fortunately, my UC has been clinically quiescent, i.e. in remission, since the diagnosis was made in March 2018. At that time, I was commenced on both oral and rectal mesalazine to induce remission. I stopped taking the mesalazine suppositories after three months but I’m still on oral mesalazine at a dose of 3 grams per day.
1. Truelove SC, Witts LJ. Cortisone in ulcerative colitis; final report on a therapeutic trial. Br Med J 1955;2:1041–8.
2. 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.
3. Seo M, Okada M, Yao T, et al. An index of disease activity in patients with ulcerative colitis. Am J Gastroenterol 1992;87:971–6.
4. Rachmilewitz D. Coated mesalazine (5-aminosalicylic acid) versus sulphasalazine in the treatment of active ulcerative colitis: A randomised trial. BMJ 1989;298:82–6.
5. Walmsley RS, Ayres RC, Pounder RE, et al. A Simple Clinical Colitis Activity Index. Gut 1998;43:29–32.
6. Jairath V, Khanna R, Zou GY, et al. Development of interim patient-reported outcome measures for the assessment of ulcerative colitis disease activity in clinical trials. Aliment Pharmacol Ther 2015;42:1200–10.