I recently responded to a tweet asking for people with IBD to help with some research looking at the perception of exercise among sufferers. This led to me being interviewed over Skype by the lovely Marnix, who himself has Crohns Disease. I answered the questions he needed for his research and it was great to talk to someone about the importance of things like this. I think it is great that someone who has IBD themselves is doing such important research, as he really understands things from a patient’s perspective too. I asked Marnix to answer some questions to post on my blog which he kindly agreed to. Read on for more information about his research and why projects like this are so important.
1 – Could you give us a brief intro – who you are and what you do?
My name is Marnix, I’m 23 and I’m currently finishing up an MSc in Clinical Exercise Physiology. I studied a BSc in sport and exercise science previous to this. My research is titled ‘Perceptions of Exercise in IBD Sufferers: A Qualitative Approach.
2 – Tell us about your IBD diagnosis – your symptoms, how you were diagnosed, what you have etc
I was diagnosed with Crohns disease when I was 19 in the summer at the end of my first year of university, but had been experiencing some symptoms from around the age of 17. This started out as extreme abdominal pain when I drank too much alcohol, but this turned into more frequent pain, diarrhoea, fatigue and severe weight loss just before my diagnosis. My mum was concerned about my weight loss (around 15kg in a month) and sent me to see a consultant fairly quickly, who diagnosed me instantly. I did however see a consultant a year before for some perianal symptoms I was having, and this consultant misdiagnosed me. According to other consultants that particular consultant was an idiot for not noticing the symptoms I was experiencing.
3 – How do you manage your IBD now?
My IBD is managed by strong medications. Due to the severity of my Crohns disease I was placed straight onto Humira, a biologic medication almost immediately. My condition has been fairly controlled since, apart from the occasional course of steroids when things are less than ideal.
4 – Why are you interested in the effects of exercise on patients with IBD?
So the first rather obvious point regarding this is the fact that I have IBD myself, so taking an interest in it seems like a fairly logical thing to do. With regards to exercise specifically, my MSc course is focused towards exercise so that interest was there, and it was a case of simply pairing them together. My interest expanded past this however when looking into the research further. Research into IBD is currently at an interesting stage where there is quite a large amount of promise for the potentially positive effects of exercise. This is due to the biology making sense (exercise is known to reduce inflammation, and IBD is all about inflammation), and some papers speaking of its all around positive effects, with some stating some reductions in disease activity after 12 weeks of exercise. Despite this, and some more high-quality research being undertaken right now, it’s still a little unclear what effect exercise actually has, as some results are rather mixed. Due of this, IBD sufferers have no guidelines around exercise, so information about what we should be doing and why we should be doing it. This sparked my interest, as I wanted to contribute to this growing area so that perhaps guidelines could be made in the next few years.
5 – What exercise do you take part in?
I participate in resistance exercise 3 times a week for an hour per time, and 1 session of high intensity interval training (HIIT) every week.
6 – Does exercise impact on your health do you think?
It certainly helps me keep my cardiovascular fitness in check, as well as positive effects on my muscle development. I don’t think it has any particular effect on my disease activity, as my disease is well controlled at the moment. It may stop it from flaring back up, but I wouldn’t know that for certain. However in my opinion its very important for IBD sufferers to exercise regularly. Alongside all the positive effects healthy members of the population will experience, there are two main factors specifically for IBD sufferers:
1. We are susceptible to osteoporosis, a condition where your bone mineral density is lower, and you have an increased risk of bone fractures
2. We are more susceptible to colon cancer.
What most IBD sufferers don’t realise is that we are both susceptible to these conditions, and that exercise has a direct positive effect on reducing the risk of these conditions. Most people don’t know this however, because we have no exercise guidelines. But that is one of the big reasons I stick to a regular exercise programme.
7 – Was your diagnosis the catalyst for the type of research you do?
I think I would likely be doing research regarding the effects of exercise on a different chronic condition if not for my diagnosis, but I certainly think the diagnosis meant I did research in IBD specifically
8 – What do your colleagues think of the work you do? Do they know you have IBD yourself? What do they think of that?
My colleagues have been supportive of the research I’m doing. My supervisor and other researchers I’ve spoken to are confident the research can be published because there is a need for more information in this area. I have one that has Crohns disease too, who has been extremely supportive and has helped with recruitment. Without them, I’m not sure this research would have been successful.
9 – What do you aim to do with your research?
While research continues to find out what exercise is beneficial, and whether or not it has a positive effect on disease activity, the thoughts and feelings of IBD sufferers goes under the radar. With IBD comes a large amount of worry and concern, and with little exercise information, many IBD sufferers are apprehensive about exercise, thinking that it may perhaps worsen their condition. What I hope to do is summarise the thoughts of IBD sufferers, and apply that knowledge to give advice into how exercise should be prescribed to IBD sufferers and what information should be readily available. Other factors to be considered might be how active a person’s disease may be, provisions such as proximity to the nearest toilet, whatever it takes so that people are comfortable exercising, and not worrying about XY and Z
10 – Why should patients get involved with research? Why is it important?
Behind everything in the medical world, research is the driving factor. That medication you take which keeps you stable? Had to go through clinical trials. The fact that we all know exercise is good for your heart? This information is readily available because of research proving it to be the case. Taking part in a piece of research could be the difference between guidelines and legislation being made that may directly benefit you as a person, or other people experiencing the same issue. If you have the opportunity to take part in research, especially for a medical condition you have, I would recommend that you contribute. It could very well influence a change that impacts the lives of thousands of people.
A huge thanks to Marnix for answering these questions, I hope you found this an interesting read! Have you ever helped out with any research before? Let me know in the comments below if you have. I am looking forward to the outcome of this research and the changes it could make to our ongoing care and treatment. I will be sure to let you know when I have more information from this to share.