IBD

I have Inflammatory Bowel Disease, more commonly known as IBD. I was diagnosed in my late twenties, although looking back, I had stomach problems for most of my childhood. I was often sick with stomach aches, fevers, and vomiting, and I have always had bowel problems. Obviously, I can't say for certain that everything I experienced as a child was connected to IBD, but knowing what I know now, I do sometimes wonder how long something had been going on.

IBD stands for Inflammatory Bowel Disease and is a term used for conditions that cause chronic inflammation in the digestive system. The two main types are Crohn's Disease and Ulcerative Colitis. I have both Crohn's and Ulcerative Colitis, which has made my relationship with my digestive system somewhat complicated, to put it nicely.

One thing I quickly learned is that IBD is very different from IBS, despite the names being annoyingly similar. IBS stands for Irritable Bowel Syndrome, while IBD causes actual inflammation and damage in the digestive system. It isn't simply a sensitive stomach; it isn't caused by eating badly, and unfortunately, it can't be cured by cutting out a certain food or drinking more water. Diet can absolutely affect symptoms, and some foods are easier to tolerate than others, but IBD itself is a chronic disease.

The symptoms vary from person to person, but common symptoms include stomach pain, cramping, diarrhoea, blood or mucus when going to the toilet, fatigue, loss of appetite and weight loss. I think medical symptom lists can make illnesses sound much simpler than they actually are, though. "Stomach pain" can mean being curled up in bed because moving hurts. "Fatigue" can mean sleeping for hours and still feeling like your entire body is made of concrete. And "urgency" can mean having very little warning before you need a toilet.

Which brings me to poo.

There really isn't a delicate way to write about IBD without eventually talking about poo, so we might as well get it over with.

When you have bowel problems, toilets can become a surprisingly big part of your life. You notice where they are. You think about how far away they are. You wonder whether you'll be able to get there quickly enough and whether it will be occupied when you do. Going somewhere new can involve mentally planning where the nearest toilet might be before you've even left home.

And yes, accidents happen.

It is embarrassing, and it isn't something people particularly enjoy talking about, but it is a reality for some people with IBD. I have bowel accidents, and I struggle with urgency. It has affected my confidence and made leaving the house more difficult because there is always that thought in the back of my mind: what if I need a toilet and can't get to one?

Food has also become complicated for me. You obviously need to eat, but when eating has repeatedly been followed by pain, nausea, or bowel problems, it can become difficult to have a normal relationship with food. There have been times when my nutrition has been so poor that I've needed a feeding tube. I never imagined a feeding tube would become a normal part of my life, but chronic illness has a funny way of changing your definition of normal.

IBD can go through periods of being relatively calm, known as remission, and periods where the disease becomes more active, known as flare-ups. That unpredictability is one of the things I find difficult. You can feel okay when you make plans and then wake up on the day with your body having completely different ideas. After a while, "I'll see how I feel" becomes a very normal answer to almost everything.

The exhaustion is another part of IBD that I don't think people always understand. Your body is dealing with inflammation, you may not be eating properly, you may be in pain, and you may be spending a ridiculous amount of time going backwards and forwards to the toilet. It is exhausting. Sometimes I sleep and wake up feeling as though I haven't rested at all.

My physical health has declined a lot over the years, and I am currently mostly bed-bound. IBD isn't the only reason for that, but it has definitely played a part. When you feel physically unwell, you move less. When you move less, you lose strength. Then moving becomes harder, so you move even less. It is a cycle I am now trying very hard to get out of.

I also think IBD can be incredibly isolating because bowel symptoms aren't considered particularly polite conversation. People will happily tell you they have a headache or a bad back, but telling someone you've had diarrhoea all day, haven't made it to the toilet or have blood in your stool feels slightly different. Sometimes it is easier to say you're tired. Sometimes it is easier to cancel plans. And sometimes you simply don't want to discuss your bowel movements over dinner, which I think is fair enough.

At the moment, my main focus is rebuilding my physical strength. I have made a gentle exercise plan, and I'm working towards being able to move more, get outside and eventually go for walks again. It is going to take time, and I know my body isn't going to suddenly cooperate just because I've decided I'm ready to get better.

IBD is only one part of my health, but it has affected a huge part of my life. I wanted to write this page because the medical definition of Inflammatory Bowel Disease doesn't really explain what it is like to live with it. It doesn't explain the toilet planning, the embarrassment, the exhaustion, the complicated relationship with food, or how quickly chronic illness can change what you consider normal.

So, this is my experience with IBD. It isn't particularly glamorous, and there is significantly more poo involved than I would have preferred, but it is part of my life.