How inflammatory bowel disease impacts everyday life


Inflammatory bowel disease (IBD) is a chronic condition that affects just about every part of a sufferer’s lives, from where they can go to their mental health to their relationships.

The term IBD is used for two conditions, Crohn’s disease and ulcerative colitis, and is characterised by chronic inflammation of the gastrointestinal tract. If left untreated, it can result in damage to the gastrointestinal tract, which sometimes requires surgery to remove part of the small intestine or colon as treatment.

Until recently, it has been unclear what causes IBD, which occurs when the immune system attacks the bowel. However, new research has uncovered a major cause – and it’s in our DNA.

A team of UK scientists have discovered a weak spot in our DNA that is found in 95% of people who have IBD. A section of DNA that controls inflammation can go wrong, causing some people to be born with a version that makes their body respond excessively to infection, leading to massive inflammation.

Dr James Lee, of the Francis Crick Institute, told the BBC: “This is undoubtedly one of the central pathways that goes wrong for people to get inflammatory bowel disease. It is the process by which one of the most important cells that causes inflammatory bowel disease goes wrong.”

The breakthrough study, published in the journal Nature, suggests that existing drugs used to treat other non-inflammatory conditions could be effective in treating IBD. However, the medication can cause side effects in other organs and scientists are working to find out how to deliver it directly to immune cells.

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Chronic stomach pain, diarrhoea and bloody stools are some symptoms experienced by IBD sufferers. (Getty Images)

Sufferers of IBD often experience chronic pain and fatigue, alongside other symptoms that force them to change and adapt the way they live so they can manage the condition.

According to Crohn’s and Colitis UK, there are numerous ways that IBD can be a challenge to live with. However, the charity offers advice and resources to help sufferers get the most out of life.

Mental health

Research shows that people living with Crohn’s or Colitis may be at higher risk of mental health problems like depression and anxiety, compared to the general population.

The charity says that around half of all people with the conditions say it has affected their mental health in some way.

Sufferers may feel anxious, frustrated, sad, scared, or angry about having the condition and dealing with the symptoms, or even isolated and ashamed. Crohn’s and Colitis UK suggests keeping a record of how you are feeling and talking about it with friends, family, and your healthcare team.

Sex and relationships

Crohn’s and Colitis can result in pain in the stomach or abdomen, joints, mouth and genital area – all of which can get in the way of having pleasurable sex.

According to the charity, pain during sex appears to be more common among women living with Crohn’s, as pelvic, vulval or vaginal pain may increase during a flare-up.

If you experience pain during sex, you should stop and let the other person know, so that together you can both find ways to enjoy yourselves. You can also try exploring different positions and use lubricant, sex toys or other support aids to help you get more comfortable.

Eating

Inflammation caused by Crohn’s can impact how well your body absorbs nutrients and liquids, making it hard for the body to make energy. Some foods can also trigger flare-ups of inflammation, and some sufferers find they have low appetite or lose weight without trying to, while others gain weight.

With one in four people with Crohn’s or Colitis saying they avoid eating out or going to social events that involve food, the charity has extensive advice on how to navigate food while living with the conditions.

It recommends keeping hydrated, even when you don’t feel like eating much, and to include foods that are high in protein, healthy fats, easily digestible fibre, and liquid foods like soups or smoothies if they are easier to manage during a flare-up.

Travel

Travelling with Crohn’s or Colitis can be tricky. It helps to be well-prepared and to start planning at least six to eight weeks before you go away, so that you can be informed with health advice, order medicines and arrange any vaccinations.

You can also speak to your IBD team about what to do if you experience a flare-up while travelling. Crohn’s and Colitis UK also recommend making sure your travel insurance covers your condition, in case you need it.

Packing enough medicines or stoma supplies, plus extra, is also a good idea, and you should take a copy of your prescription with you. Check what facilities are available during your journey and at your destination, and find out how to access healthcare there.

Pregnancy and breastfeeding

The charity says that most people with these conditions can expect to have normal pregnancies and healthy babies. However, it is recommended that you speak to your IBD team before trying to get pregnant, as you may be more at risk of pregnancy complications if your condition is active while pregnant.

Exercise

Keeping up a fitness routine while living with Crohn’s and Colitis can be difficult, but can be done safely. Research suggests that exercising does not cause flare-ups, and it is important to stay active for physical and mental health.

Crohn’s and Colitis UK says that how active you can be with Crohn’s and Colitis will likely depend on how active your condition is and your symptoms at the time. You can speak to your IBD team or GP if you are struggling to increase your physical activity.

Watch: Crohn’s sufferer calls on public to get checked as she shares diagnosis story

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