Guest Post for IBS Awareness Month: A Bit of Hope

IBS Impact welcomes a new guest blogger this week. Billy Robinson lives in the UK and has suffered with IBS since he was a teenager. Now in his 30s, Billy has received treatment for IBS in the UK, Europe & Australia. Billy has learned to embrace being stuck a home with IBS, by enjoying hobbies which can be done from home, such as playing the guitar and learning Spanish. When he is well, he enjoys playing football (soccer), music festivals and visiting friends. He wrote this article especially for IBS Impact. We thank him for his prompt, articulate and forthright willingness to share part of his IBS story with others in order to raise awareness and hope.

For over 15 years, I have suffered from IBS. I was diagnosed within weeks of symptoms, whilst I was still a teenager. At the time of diagnosis, I wasn’t offered treatment. After several appointments, I was told to adjust my fibre intake.

For the years that followed, my IBS symptoms continued to get worse and peaked at around year 5. I was now in my early years of adulthood, working full time, paying a mortgage, and commuting to work. I was suffering from severe symptoms every day. I had no support system. My friends didn’t understand, and my family were not supportive.

For many years, I felt utterly hopeless, and the symptoms had put me in a very dark place. I knew I would spend my life in pain with uncontrollable IBS symptoms.

Around 2015 I decided to go to Australia. I also suffer from psoriasis which is improved by the sunlight. My hope was that my psoriasis and IBS would improve from extended sunlight. My psoriasis improved a lot from the sunlight. My IBS did not.

I started working in Australia. After a chat with a colleague about IBS, the colleague suggested I visit a gastroenterologist. I had some savings so paid for an appointment with a gastroenterologist– My very first gastroenterology appointment, years after diagnosis.

The gastroenterologist suggested a low dosage medication called amitriptyline. I didn’t want to try medication, but the gastroenterologist was confident. The low dosage didn’t really work. The dosage was then increased. Within days, I noticed a real reduction of my IBS symptoms. Over the weeks, my symptoms were reduced more and more.

I don’t really have the words to describe how it felt to find a treatment that reduced my symptoms. I felt like I had survived a war or had been resuscitated from a cardiac event. I felt like I was a prisoner who had been granted parole. I had hope for the first time.  

I still had symptoms whilst taking the medication, but less severe. I decided to dedicate my life to two things. Firstly, trying to enjoy life and secondly, finding more treatment.

As I write this, I now have several treatments. Amitriptyline is still my ‘main’ treatment, but I use several medications, therapies, diet changes and lifestyle changes which improve things further. I now have something of a life.

My overall IBS symptoms are now reduced by about 50%. Some days I’m ok, other days I am not ok. I still have challenges, flare-ups, and daily symptoms. The flare-ups which tend to last several weeks do still put me in a dark place.

I had the feeling of freedom from treatment, but I still have battle scars. Despite surviving, I’m still dealing with the issues that come with having a metaphorical ‘cardiac event’. I’ve been granted ‘parole,’ but I still visit a ‘parole officer,’ The analogies I give are to explain that although things are better, I still face physical and mental challenges, due to IBS.

I live in hope that one day, things will get better.

Some tips / suggestions

I’ve had IBS for most of my life in fact. I don’t try to give ‘advice’ as I think everyone’s situation is different, but I can make some suggestions / tips that have worked for me.

Many people with IBS find work difficult. For me, I have accepted that the most appropriate job is a low paid, low stress, data entry job, where I can start late and work from home. It’s not what I want to do, but it’s a job and I try to enjoy my hobbies in my free time.

I had to ask myself a question, what can I do and more importantly, what can’t I do. IBS sufferers may need to go through the same process to find the right job.

In terms of coping, I didn’t for a long time. Treatment has helped and has giving me hope. I now ‘cope’ with flare-ups and daily symptoms by being good to myself, getting rest and trying to enjoy my day. That may be playing sports, or it may be laying in bed watching TV (The latter more often than not). Don’t get me wrong, having IBS is horrible and nobody deserves it, but with some adjustment, there can be some happiness.

I’d like to add a point about mental health as well. Over the years, I have researched mental health (and by research, I mean hopelessly googling). I have found that general mental health advice isn’t compatible with IBS.

‘Go for a walk’, this only left me with worse IBS symptoms and a reminder of how much I’m suffering ‘Eat a healthy diet’, this is difficult when IBS symptoms are caused by so many foods. ‘Talk to someone’, I’ve tried, nobody understands. This mental health advice left me feeling more hopeless, sad and alone.

Treatment of IBS has helped my mental health, but talking therapy has helped as well. Talking therapy helped me learn that people in worse situations have been happy. People on their death bed, people with terminal illness, people with other gastrointestinal conditions such as crohn’s, colitis and celiac.

These people have all found ways to enjoy life to a degree and be happy at times, just by being happy. A combination of treatment for IBS, talking and knowing that being happy can be a choice has helped me. Sometimes my symptoms are too bad to be happy, but other times the symptoms are not so bad, and I am just, well, happy.  

I can’t give much in terms of tips for friendships and relationships. I have been able to and change things for myself, but when others are involved, it’s challenging.

Nobody will understand IBS. I think back to when I didn’t have IBS and I never would have ‘got it’. All I can say is, if you have someone in your life who is happy to go out, or happy to stay home at a moment’s notice, that is a person worth keeping in your life.

If you’re reading this and you’re feeling hopeless, scared and not sure how to carry on, just know there is treatment available. Since I was diagnosed nearly 2 decades ago, treatment has gotten better. My medical appointments have been from professionals who are much more sympathetic. There is also research into further treatment, some of which I have been a part of.

It may take a few years, or longer, but there will be more treatment for IBS one day. So for now, just hang in there.

• Posted in: Awareness ♦ Guest Posts ♦ IBS ♦ Irritable Bowel Syndrome