Inflammatory Bowel Disease - More than Meets the Eye

Inflammatory Bowel Disease (IBD) is a term describing chronic inflammatory conditions of the digestive tract. The two most common forms of IBD are Ulcerative Colitis (UC) and Crohns Disease (CD). IBD can be an extremely debilitating condition, significantly impacting quality of life. Most people with IBD will be on lifelong medication, with the possibility of surgery in more severe cases.

IBD not only has a severe impact on one’s physical health, but it also has a major impact on both psychological and social health. As it is currently IBD awareness week, I thought it was an ideal time to share some education on IBD, the effect it can have, my personal journey with IBD, and how you can support those in your life who have IBD.

IBD and Physical Health

It is a well-established fact that IBD can have a detrimental effect on your physical health. Some major symptoms of IBD include chronic diarrhoea, bloody stools, severe stomach pain and chronic fatigue. As you can imagine, when one or more of these symptoms are present it can greatly impact your physical function.

Major unintended weight-loss is a common side-effect of IBD, due to a combination of multiple factors. This weight-loss greatly reduces one’s muscle mass, which can be seen in the increased rate of sarcopenia in the IBD population. There is also an increased risk of osteopenia/osteoporosis in the IBD population, which is likely a result of malnutrition/malabsorption and reduced physical activity.

IBD and Psychosocial Health

The effects of IBD extends far beyond that of a purely physical impact. There is a myriad of psychological and social issues associated with IBD. IBD leads to an increased risk of depression, anxiety, stress related disorders, and many other mental health problems.

Individuals with IBD regularly struggle with body image. There are many reasons for this. Weight can fluctuate very regularly with IBD, with significant weight-loss during flares, followed by large weight-gain during periods of remission. Certain medications used to treat IBD can also cause weight-gain. Anyone who has been on long-term steroids will likely be familiar with the associated ‘moon face’. When your weight fluctuates so regularly, as well as your body feeling weak and fatigued, it can really impact how you view your body, contributing to further psychological issues.

Social anxiety is also a significant factor for individuals with IBD. During a flare, any form of socialising can seem daunting, especially when there's food or alcohol involved. Research also shows seemingly everyday things like going to the gym are more difficult for IBD patients due to the increased social anxiety.

My Experience with IBD

This is something I’ve never been too open about and have always kept relatively private. However, last week I was asked to share my experience with Crohns and Colitis Ireland for IBD awareness week. I thought that there are likely many people similar to myself (young men in particular), so if by sharing my experience and knowledge I could help at least one person that is struggling or educate one person that doesn’t know what IBD is, then why not. It's also something that there should be absolutely no stigma around talking about.

I was diagnosed with Ulcerative Colitis (UC) at the age of 17. In the years prior to my diagnosis I had attended the local A&E multiple times for chronic stomach pains and gut related symptoms. It probably took two-to-three years before getting my diagnosis. It wasn’t until the end of secondary school when I realised something was very wrong. There was a period of 9-12 months where I was going to the bathroom 20+ times per day, passing large amounts of blood each time. This was understandably a scary time, which was probably made worse by the fact I didn’t share it with anyone and avoided going to the doctor for months, convincing myself it would pass.

When I finally got the necessary testing done and received my diagnosis, I started on high dose steroids and immunosuppressant medication. This was around the time when I was moving away from home for the first time to start college, so the timing couldn’t have been less ideal. My symptoms remained uncontrolled, not helped by the excessive alcohol use and university diet. This culminated in me dropping out of college after one semester due to declining physical and psychological health.

I tried various different medications throughout this period, with little success. I went back to college the following year, but for much of my 1st and 2nd year symptoms remained poor. Thankfully, I eventually found a medication which worked for me and brought me into remission. I educated myself on appropriate nutrition and exercise, trying to gain size and feel less weak. From my final years of secondary school to my 3rd year of college, I gained 24kg. At my lowest, I had a BMI of 17. There were a lot of body image issues along the way, but these improved massively as my relationship with food and exercise improved. There will probably always be some body image issues present, but that is relatively normal and manageable.

I had my first major flare up last year for the first time in years, which resulted in a three-day hospitalisation, but thankfully I responded well to medication this time.

I’m currently probably in the best place I’ve been since my diagnosis. My primary symptoms at the minute are occasional stomach pains and fatigue, once I manage my lifestyle well (stress, diet, exercise). When you have severe symptoms for such a long period of time and feel like there’s no escaping them, stomach pains and fatigue pale in comparison.

I’m much more comfortable discussing the topic now, which I think is important too. If anyone was to think of someone any differently for having a chronic medical condition that they can do nothing about, then it says a lot about that person and it’s likely not someone that adds much to your life.

I don’t have IBD, but how can I help someone who does?

If you have any friends or family who have been diagnosed with IBD, then there are lots of ways in which you can support them.

• Educating yourself on their condition, how it may affect them, and associated symptoms is really important. If you know what to expect it will allow you to be of more support.

• Don’t belittle their experience. It may be hard for you to understand their condition as you’ve never experienced it, but the last thing you should do is belittle their experience. ‘Ah it’s just a few stomach pains’ is probably the worst thing you could say to someone who has had their life changed by a diagnosis of IBD.

• Don’t comment on their appearance. Even if you mean well, don’t. Not that you should comment on anyone’s appearance. Individuals with IBD may have regular weight fluctuations and can have poor self-appraisal, so even if you think you’re giving someone a compliment it is probably best to avoid it. I was told multiple times over the years that I look ‘very thin’ or ‘skinny’. I know the people who say it are not saying so in a malicious way, but it does impact how you view yourself.

• Do not compare your experiences to theirs. I can’t emphasise the importance of this enough. It has happened to me countless times over the years, and it is extremely frustrating. I have had people compare indigestion, traveller’s sickness, food poisoning, heart burn, lactose intolerance and period cramps to IBD. Also, IBS is not IBD. That is generally the most common comparison that is made, which generally just comes from a lack of education.

• Listen. If someone opens up to you and talks to you about certain aspects of their experience with IBD, it means they trust you. Listen without interruptions or drawing comparisons.

Conclusion

Coming to terms with an IBD diagnosis can be difficult and may take time. There can be some very dark days, but there are many ways that you can get the help or support you need. Things will improve.

There are dedicated charities and organisations for IBD patients, such as Crohn’s Colitis Ireland and Crohn’s Colitis UK. There are many supports offered, so get in contact with them and get the necessary support you need.