Sawm – it’s one of the Five Pillars of Islam. It means fasting from dawn to dusk during Ramadan, the ninth month in the Islamic calendar. Ramadan follows the lunar cycle, meaning that there’s a shift in when it falls each year. When it lands in summer, the fasting period in the UK can reach around 18 hours a day.
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Many people living in the UK (and around the world) observe Ramadan while living with Crohn’s or Colitis, which can bring with it extra challenges. For some, such as Omar Malick, fasting is not an option. Although Islam allows for someone to breakfast if they are severely ill and will become worse due to fasting, this can carry with it complicated feelings – guilt, worry that other people might judge you, an increased pressure to do more to mark Ramadan in other ways.
Omar’s experience of the condition has been severe. He’s had two resections, feeding tubes, and in 2012 had his first Hickman line inserted for intravenous nutrition. He had been taking part in a medical trial which, he politely says, “didn’t go well”. His weight dropped and his symptoms became more severe. His consultant made the decision to take him off the trial and he spent five weeks in hospital, eventually leaving with the Hickman line. Alongside other adaptations to his lifestyle, fasting for Ramadan became incompatible with Omar’s health.
The past few years it’s been difficult
“Obviously, you can’t take anything orally or nutritionally or anything, and that extends to intravenously as well." Omar says. "I’ve had a health practitioner offer to write a letter to an imam or a religious leader to explain. Thankfully it’s never gone that far, but to know that I’ve got the medical staff on my side is always reassuring. The fasting is compulsory if you are able to. So if for medical reasons you can’t, if you’re taking medication, there is a degree of flexibility there.” It’s difficult, however, to fully accept the doctors’ advice. “I’ve been a little bit naughty and have kept a few fasts, just on my nights off if I can manage. And it hasn’t been terrible, which sort of makes you feel worse – if I’ve managed it once, I can do it again. But it’s probably not a good idea to,” he reflects.
The bigger challenge, Omar says, is the feeling of exclusion.
“Your friends, your family, they’re all taking part in this one-month event and you’re sort of looking at it like an outsider. They’ll be talking about, oh, it’s been difficult this year, or how it’s going while there’s a heatwave on and how they’re all hungry and thirsty. You can’t relate to any of that, and they’re going through it, and you feel a little bit guilty for eating even though it’s completely out of your hands.”
I’ve been lucky, no one’s really said anything to me
Omar tries to be discreet when eating or drinking in public during Ramadan, as he realises it would be difficult for someone to understand on first sight why he is breaking fast.
“You get that feeling that you might be judged.", he says, "People come to their own assumptions – he’s not fasting, he’s not doing this, he’s not doing that, he must be ashamed. People don’t automatically jump to the assumption that, oh, he must be unwell. On first glance, I look pretty normal and it’s not until you see the scars, the stitches, the line dangling, that you realise it’s not all great. If someone ever does approach me, asking ‘why are you eating?’ or ‘why are you doing this?’, I’m happy to explain why. I’m not ashamed or embarrassed by it.”
Fasting is only one facet of Ramadan.
There are other ways to respect the sacred month, however, and Omar does what he can.
"Other ways to feel involved include praying, going to mosque, reading the Quran, our holy book, and generally taking the month to reflect and improve oneself. Aside from food you can refrain from other things, like gossiping, smoking, and drinking. If you’re up for it, there are always charity projects you can help with through your local mosque.”
I avoid going out with my feed and pump
Some longer prayers at the mosque take place at night and, Omar says, attract a good turnout. By this time of day, though, Omar will be connected to his intravenous nutrition, and that makes this a potentially difficult situation for him.
“It’s in a rucksack, and to be around so many other people is a risk. It could get caught or, worst case, be mistaken for something else. Having to explain why I can’t take off the rucksack with essentially wires coming out of it is not something I’d like to do.”
At the end of Ramadan, Eid is celebrated – and some of the weight will be lifted from Omar’s shoulders as Sawm comes to an end.
There is a tradition at the end of Ramadan that older relatives give money to the younger ones. For Omar, this is another awkward situation. He says: “You’re taking money from your grandparents, your parents, and thinking, well, I don’t really deserve this. I haven’t done anything this month to warrant this reward. They’ll say, ‘You still took part, you did this, you went to the mosque…’ but you don’t feel you deserve it.”
Expert advice from Dr Barney Hawthorne
For the vast majority of patients with Crohn’s and Ulcerative Colitis. Some exceptions are:
if there are high fluid losses – this could be because you have an ileostomy that gives a high-volume output, a fistula that has similar high output, or you have severe diarrhoea
if there is severe malnutrition, or inability to eat a large meal in a short time
if there is very active disease resulting in severe pain, fever, fatigue, vomiting or diarrhoea
if there is a need to take medication by mouth during the day