Crohn’s Disease: Daily Life, Symptoms and Charity Support

Crohn’s Disease

crohns diseaseCrohn’s disease is a form of Inflammatory Bowel Disease (IBD). It’s a life-long condition that causes inflammation of the digestive system.

The condition affects each person differently, and inflammation can occur in any part of the digestive system. The symptoms tend to differ depending on where the condition is active within the bowel and can range from feeling feverish to severe abdominal pain.

Why Does it Happen?

Currently, there’s limited information about what causes Crohn’s disease, although some progress has been made during the past few years. Scientists believe that there’s a combination of factors which may cause Crohn’s disease. Findings show that genetics, combined with an abnormal reaction between your immune system and certain intestinal bacteria, are potentially the main causes of Crohn’s disease. However, it may also be influenced by other factors like smoking, stress and diet.

Is there a Cure?

Crohn’s disease is a chronic illness that does not yet have a cure. Thanks to medication, and in some cases surgery, it’s possible to go into remission and have long term relief from the condition.

Ruth’s Story

Ruth Adley

Pictured above: Ruth

Ruth Adley, 60, was diagnosed with Crohn’s disease in her twenties and it affects her life on a daily basis.

Crohn’s disease is commonly misdiagnosed due to it sharing symptoms of other bowel conditions.

“I was diagnosed in 1983, and it took it 12 years to get an official diagnosis. The doctors thought it was just the narrowing of the artery leading to the bowel at first. After deciding it wasn’t that, they refused to test for Crohn’s disease; even though my sister had been diagnosed with it years before.”

Symptoms of Crohn’s Disease

The symptoms of Crohn’s disease vary from person to person, but they can happen every day and have a significant impact on daily activities.

“My main symptom is the urgency to use the toilet without warning. I also suffer from the side effects of tiredness and diarrhoea – even while in remission.”

Although Ruth’s symptoms are currently manageable, daily tasks are made a little more complicated, as she has to consider her illness when she’s out and about.

“I’m not comfortable going on long drives in case there’s traffic, and I need the toilet urgently. I take extra pills when I know I’m going on a longer journey – I always make sure to avoid motorways too. I also need to be aware of the toilet situation wherever I go.

“I have to be careful about what I eat, as I can’t have any foods that aren’t easy to digest, like nuts and coconut.”

“I try not to let the illness take over my life. It would be very easy for me to stay at home, where I have everything I need, and not have the stress of going somewhere new.”

Crohn’s Disease Treatment

Over the years Ruth has had multiple operations to help her cope with her Crohn’s disease and some of the side effects.

“When I was diagnosed in 1983, I had a bowel resection. Unfortunately, three days after I was discharged from the hospital, I had to have another operation as I had developed an abscess under the scar tissue. I’ve also had many kidney stone operations, as these can be a side effect of Crohn’s disease.”

Ruth has to take medication every day to help relieve the symptoms of her Crohn’s disease.

“I take pills to stop me needing the toilet urgently and also for my kidneys. Due to the resection operation, I have a bile salt malabsorption, so I have to take medication for that too.”

A Message for Others

Not many people are aware of Crohn’s disease, and it can be referred to as an invisible illness because to others it appears that there’s nothing wrong.

For people who are coping with Crohn’s on a daily basis, Ruth recommends finding people in a similar situation to talk to.

“Talk to others who have the disease so you know you’re not alone. Make sure you go to a hospital that specialises in Crohn’s disease and speak to the consultants about how you feel, without bottling anything up. Try to be in control of the illness and don’t let the illness control you.”

Ruth is lucky to have a strong support system around her, which includes both her family and health professionals.

“Whenever I need to see my GP, he is always supportive and helpful, and the IBD nurses have been great too. My sister obviously knows what I’m going through, as she also has Crohn’s disease.”

forCrohns

Natasha and Lisa at a forChrons fundraising event

Pictured above: Natasha and Lisa with forCrohns patron Les Ferdinand

Ruth’s daughter Natasha does everything she can to support her Mum and many others who are affected by the disease. She set up a UK charity with her friend Lisa when they were 16, called forCrohns.

“I set up the charity because both our mothers have Crohn’s disease, and when we met at age 14, we hadn’t heard of anyone else with the condition, so we wanted to start raising money and awareness for Crohn’s disease.

Fundraising Events

The charity is volunteer based; Natasha and Lisa have full-time jobs and run the charity in their spare time. Each year they hold an array of events to raise money for Crohn’s disease.

“We were 16 when we set up the first event in 2003, which was a walkforcrohns in Hyde Park. It was supposed to be a one-off event, but the feedback was so positive, it became an annual event. Years later it developed into a national charity with a volunteer committee.

“Our annual event is the 10kforCrohns, which takes place each year as a run or walk in Hyde Park. We’ve held a variety of other events, from quiz nights and comedy nights to singing competitions.”

Raising Money to Fund Research

ForCrohns has been a great success, and it’s now one of the main UK charities dedicated to Crohn’s disease research.

“We are the only volunteer-run charity that raises money solely for Crohn’s disease, and all funds go towards research about Crohn’s disease. We fund a variety of projects, which tend to be future focused, looking towards a cure and managing day-to-day life. This year we’ve set up our innovation grant to fund some small scale projects, which can have an immediate benefit to those with Crohn’s.”

As well as raising money to fund research, forCrohns is helping to build a community of Crohn’s disease suffers for mutual help and support.

“Some people are diagnosed with Crohn’s and know nobody with the condition. We have an online pen pal scheme that people can sign up to, to be matched with another person with Crohn’s as an email friend and for support.”

The whole Crohn’s community have come together to write a book about the disease, which is available to buy on the website.

“We published BookforCrohns in May 2015. It’s a book created by the whole Crohn’s community – the patients, their relatives and the healthcare professionals. Most literature that exists comes specifically from a patient or a medic, so we wanted to bring the community together, to offer perspectives and opinions from a range of people.”

Disclaimer:

The information in our blog articles is for personal use only and not a substitute for professional medical advice, diagnosis or treatment plans. We are not medical health practitioners or mental health providers. If you’re worried about a potential medical condition, contact your GP or call an ambulance in an emergency situation.

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