Rahul’s Story – IBS
Tell us a little bit about you
My name is Rahul (he/they). I am a queer, trans, disabled, neurodivergent brown person. I am an artist, musician, web designer and generally creative person and I share my work and my experiences through Instagram and my website dragonspirals. I’m an ambassador for the organisation Chronically Brown, which is a not-for-profit company for the disabled South Asian community.
Can you remember when your symptoms began?
I distinctly remember times when I was in school and sitting in class, desperately trying to ignore stomach cramps and pain, trying to hide the fact that I was in pain. The problem was that at the time, with multiple other undiagnosed chronic illnesses, my ‘gut’ symptoms were not the most painful or severe symptoms that I was experiencing. I did not address my Irritable Bowel Syndrome (IBS) symptoms for a long time.
Talk us through your journey to diagnosis with IBS.
I have very mild intolerances to a lot of food. There were a few months where I was having such bad gastric pain every time I ate, that I was struggling to eat anything. At this point I (finally) thought I should get help with my digestive issues and saw a gastroenterologist. Whilst seeing this consultant, I also mentioned my bowel issues. After a few tests, I was eventually diagnosed with IBS.
As a child I did not realise that most people are not in physical pain every day, because I just assumed that my experience was normal. I had diarrhoea almost every day for quite a while, but still never thought to see if it could be treated.
What symptoms do you experience?
My IBS symptoms include bloating, constipation, diarrhoea, nausea and stomach cramps. I also have a few other chronic illnesses, so experience many more symptoms and I find it is not always easy to separate which symptoms are caused by which chronic illnesses.
How does this affect you day-to-day?
More recently, my symptoms are less severe. I am in a lot less pain day-to-day because of medication and treatment. I still experience symptoms every day, but I am grateful that it is milder now.
One thing I struggle with is being self-conscious when my symptoms are worse, such as when I have such bad bloating that I almost look pregnant, or when I accidentally fart in public and it smells really bad. I will admit that I have previously blamed my dog for a few of the really stinky farts (sorry Moya!) There is a lot of stigma around discussing gut health, and many people believe it is too gross to talk about.
Do you find there’s anything that tends to worsen your symptoms? How do you manage that?
Lots of different foods aggravate my symptoms, and it has been a long journey trying to figure out which foods do so. I have managed to figure out a lot of them, but it has taken time. The other issue is that a lot of my medications for other conditions will have bloating, diarrhoea or constipation as side effects. Trying to balance these side effects with different types of medication has been tricky, and it takes a lot of compromise to decide whether the side effects are worth dealing with.
When you’re struggling with your symptoms, what do you find helpful?
Medication has been helpful, particularly for symptom relief. I remember when I used to take medication for gastric pain and loperamide for diarrhoea. As I take a lot of medication, the way I remembered it was that loperamide was for the lower part of my digestive system – my bowels!
Dietary changes work well for symptom management, but it is very hard to figure out what changes to make. There is lots of misinformation and conflicting information about diet and what is “good” for you and what is “bad”. Diet culture makes us believe that there is a distinct line between healthy and unhealthy foods and we need to realise that there is no universal “good” or “bad” foods. All foods have their benefits, and all foods can cause problems in excessive quantities. Everyone is different. I think the only way you can really figure it out is by trying different things out.
What information do you wish you had received earlier?
I suppose I’d have liked to be told that my symptoms can be managed, and that they aren’t a normal part of digestion. It may seem obvious to others, but I really thought that digestion was inherently painful.
What are your hopes for the future?
I hope that as a society, we can discuss gut health more openly. Hearing other people talk about their experiences with chronic illnesses helped me so much when I was struggling to understand and accept my illnesses. By sharing my own experiences, I hope to be able to help someone else in the same way.