Tummies – we all have them. Toilets – we all use them. Irritable Bowel Syndrome (IBS) – probably heard of it. Inflammatory Bowel Disease (IBD) – probably not heard of it. This article aims to provide a new found knowledge and awareness of what Inflammatory Bowel Disease is really about and to ultimately remove the stigma, isolation and fear surrounding the issues of tummies and toilets.
IBD affects more than 300,000 people in the UK, and despite this huge number, it quite often goes undetected. It is an auto-immune disease with Crohn’s disease and Ulcerative Colitis being the two types of IBD. Although there are differences in the conditions, their symptoms can be very similar.
Crohn’s Disease is basically the inflammation of the digestive system or any part of the gut. Ulcerative Colitis is a little different. UC, as it is referred to as, is a condition which causes inflammation and ulceration of the inner lining of the rectum and colon.
The symptoms aren’t all that pleasant, with the most obvious being recurring diarrhoea which usually, but doesn’t always, contains blood, mucus or pus. There can also be the need to visit the toilet between five and twenty five times a day, and it can be the most significant indicator that something isn’t quite right with the body. Excruciating cramping pain in the abdomen, tiredness and fatigue, loss of appetite, weight loss, feeling generally unwell and in some cases, mouth ulcers can also be symptoms.
“There are ways to control and help alleviate symptoms to allow life to return to normality”
It is important to understand that the severity of these symptoms is dependent on the extent of inflammation. For some, it can have a huge impact on their everyday lives. In other cases, some can go weeks, or even months with just very mild to no symptoms at all with the right medication.
With any case of Inflammatory Bowel Disease, those who are on life-long medication may find themselves going through waves of remission where they feel 100% well. Whereas sometimes, for whatever reason, flare-ups can occur where despite taking regular medication, symptoms can reappear and it can take a little bit of time to re-adjust and decide what the next step is to overcome the issue.
For the time being, Crohn’s disease and Ulcerative Colitis are chronic, life-long conditions where there is no current cure. But, and a big but, it can be controlled by medication or in some circumstances, surgery may be the only option.
It does well to remember and realise that, although the thought of something like this is daunting and scary, those who have suffered, no matter how long the diagnosis takes, feel ultimate relief. A relief in the sense that they now have an answer in regards to knowing what is happening to their body. There are ways to control and help alleviate symptoms to allow life to return to normality without having to worry about where the nearest toilet is.
My IBD story, more specifically, Crohn’s disease story, began almost five years ago in August 2012. Just like any other 18 year old, I had just finished college for the summer, started a new part time job, was beginning to learn how to drive and trying to decide which university I wanted to go to. There was nothing untoward or overly stressful going on.
“Endless trips to the local doctor’s surgery came out with a range of different prognosis’, including chlamydia?!”
However, little changes were happening to my body. It first started with feeling a little bit more tired and fatigued than usual, even when I didn’t get up too much during the day. I would fall asleep on my bed without even realising. I soon began to get cramping pains in my stomach – sometimes they’d be tolerable – other times they would be excruciating. The most obvious symptom was having to go to the loo a lot more often. It happened mostly after eating, no matter what food it was – whether it be a chocolate bar or a roast dinner. I associated food with pain, and so my appetite was beginning to go, and my weight plummeted. I wanted to eat so badly, but the pain was too much to deal with sometimes. The not so obvious symptom were red, painful and itchy swellings up and down my legs. Flea bites came to mind, or even a bizarre allergy to some new washing powder. It was however, in fact, a little less known sign of Crohn’s disease which affects only 10% of IBD sufferers.
“A loyalty card wouldn’t have gone a miss after three months of countless visits to my GP”
Unfortunately for me, my diagnosis took some time. Endless trips to the local doctor’s surgery came out with a range of different prognosis’; indigestion, acid reflux, chlamydia(!?), making it up in my head, to an eating disorder.
A loyalty card wouldn’t have gone a miss after three months of countless visits to my GP. The final prognosis was enough for the doctor to tell me to “go home, back an overnight bag and get yourself down to the hospital. I’m referring you now” with what he suspected to be a burst appendix. It didn’t quite explain the diarrhoea, which I have no embarrassment in being honest about, but I was finally getting somewhere with an answer.
By no means do I put the blame on any doctor for not realising sooner because despite how the awareness of Crohn’s disease and Ulcerative Colitis is getting higher, it is still a condition which isn’t thought of first when presented with the symptoms.
After what felt like hours of tests the following day with ultrasound and CT scans, two doctors and two nurses approached my hospital bed. I was in high spirits for once – probably due to the amount of pain relief I had been given. I don’t remember much of what was said. It felt like I’d zoned out and came back to reality where the doctor was saying “I’m sorry” over and over. The nurse comforted me with a little smile and handed me a green booklet.
“Getting diagnosed with Crohn’s disease” was the title of the booklet. Big, bold letters. Crohn’s disease. What on earth was Crohn’s disease? I thought it was terminal, I thought I’d just been given a death sentence.
My mum, on the other hand, was slightly relieved. She knew what Crohn’s disease was. It runs in my family. I just didn’t understand what was going on, or what was going to happen next.
It was hard to take in, despite welcoming an answer as to what was going on with my body. I wanted to know what could have made it happen. What were the triggers? Thinking of all the could have, would have, should haves were beginning to get on my nerves.
I did my own research and found out that there can’t be a single thing to pinpoint the cause of Crohn’s disease. It is a combination of multiple factors; genetics, an abnormal reaction to the immune system to certain bacteria in the intestines, or an unknown trigger – a possible virus, diet, smoking, stress.
My next concern was that I was the only young person to get diagnosed with such a condition. That couldn’t have been further from the truth. Crohn’s disease can occur at any age and can affect anyone. The symptoms usually start to show in childhood or early adulthood. Hence how recent reports have found that the number of children and young adults being diagnosed with the condition is getting higher and higher, and therefore the importance of understanding IBD is even more so important.
The next few months were absurd. Biopsies are usually taken to confirm what the medical scans and blood tests indicated. I was taking 30+ tablets a day and made up my own little medication timetable to help keep track of what I needed to take and when.
A lot of things needed changing in my life. I had been given a dietician to help me figure out a new diet plan to help ease inflammation. I had to take it easy, I couldn’t play netball anymore as my energy levels had plummeted. I met with my gastroenterologist consultant and my IBD nurse to help with any questions or worries I had. I thought I was getting better, and I felt like I was.
In the beginning of 2013, as I attended what felt like my one-hundredth appointment with my IBD nurse, I was booked in for an MRI scan as I had a significant pain in my groin. During the same appointment the different types of long-term medication were discussed; immune-suppressants, steroids and other drugs which are all options for achieving remission of Crohn’s. Of course, possible side effects were extensively discussed, and how they can sometimes be tough for some individuals receiving medication treatment. However, the reassurance and realisation that this medication should help me to live a normal life again and get into a state of remission was welcoming.
“I was given the option of surgery which effectively removed all traces of the disease”
Sure enough though, the MRI scan had shown something. An abscess was sitting on top of where the active Crohn’s was. I was told to pack an overnight bag again, but this time, for a longer stay, and to get back down to the hospital. This hospital visit was going to be very different from the one I had experienced only three months previously.
By the end of February I’d had an operation to remove the diseased part of my intestines and drain the abscess. The need for an operation in relation to treatment for IBD is usually the last resort after all other avenues of medication have been exhausted.
The recovery process was to be a long one, and although it was the most extreme way of dealing with the Crohn’s, I’ve never looked back since.
My story/experience/journey – whatever you want to call it – with Crohn’s disease, was anything but straight forward. In some ways I feel like one of the lucky ones. I was given the option of surgery which effectively removed all traces of the disease, and therefore means I no longer have Crohn’s disease.
Those who have had surgery are always told that there may be a time when IBD could return, but for now and five years on – touch wood – I feel very lucky to be able to go with the flow and make the most of leading a life without the need of medication, and be able to eat a pretty normal diet.
It’s all personal to the individual, but diets may need to be changed to help with any flare ups. Some people feel that they ought to avoid certain foods and drinks, but what is important to understand is that what may be necessary and work for one person, may not be the same for the next.
Everybody’s experience with Crohn’s disease or Ulcerative Colitis is always going to be different, but that isn’t to say that a diagnosis of it should be met with fear and angst. Those who have suffered with the symptoms almost always welcome a diagnosis, as it finally gives an answer as to what is going on. In turn, it can mean that there will be a focus on what to do next and how to get better.
It can all seem a bit complicated and overwhelming, but identifying the symptoms and noticing patterns in the body’s behaviour can all help with a possible diagnosis. It also does well to realise that anyone who is given a diagnosis is sure to be worried and nervous, but also in most cases – relieved. Diagnosing Crohn’s Disease or Ulcerative Colitis can take time, so it is important to push your GP if you feel that is what is needed.
Never be ashamed to visit your GP if you feel that something needs to be looked into, even if it is for your own peace of mind. They’ve seen everything before, and the ultimate importance is for you to feel safe and comfortable within yourself.