I run the #IBDSuperHeroes group on Facebook, and one of the most popular topics is new treatment. Understandably, people want to know what to expect if they’ve been prescribed a new one, but it’s so difficult to answer!

Because IBD is so complicated, I often feel like my answer is not going to be of much relevance. It’s impossible to say how someone else will find a medication based on my experience.

I’ve tried lots of medications such as 5-ASAs (oral and rectal), different steroids (oral and rectal), Azathioprine, multiple antibiotics for pouchitis, and biologics. There’s also been many different pain medications and treatments for other symptoms.

My treatment experience

I feel I have been pretty lucky with medications. Other than my negative experience with Prednisolone, I seem to have gotten off lightly when it comes to treatment side effects.

I was on Azathioprine (Imuran) for a good few years, and the only side effect was a sensitivity to the sun. That wasn’t a particularly bad thing, it just meant I always had to remember to use a high-factor sunscreen – a must when taking Azathioprine. I’ve never been a sun worshipper anyway, so it didn’t feel like a big deal to me. I began to experience hyperpigmentation on my face whilst taking Azathioprine. I’d assumed that was part of the sensitivity to the sun, but it still happens and I’ve been off it for years, so I’m now unsure.

There’s also an increased risk of infections, but I didn’t find it was a problem for me. Our office was always full of people with bugs, and I never caught any. My main problem with Azathioprine was actually when I was coming off it. I started to suffer from nausea, and I had to live on anti-sickness for a couple of months! Yet I know people who have had awful reactions to Azathioprine; a few even lost all of their hair!

When I was on Infliximab (Remicade), I had folliculitis. I always felt really tired on infusion day and the day after, but that was it. Again, some people may really struggle with its side effects.

We’re all different

The side effects list in the patient information leaflets is always extensive. Some people might experience no side effects at all, whilst others are making a tally chart because they have so many!

Then there’s the efficacy. A medication improving my symptoms in a week doesn’t really have any relevance at all to anybody else.

I see people replying to posts saying things like: “Brilliant drug. You’ll be feeling back to your normal self in 2 weeks.”

Or on the opposite end of the spectrum: “Don’t bother, it doesn’t work.”

I find this incredibly frustrating and unhelpful because there’s no real way of knowing. Our bodies aren’t the same. When it comes to symptoms, we don’t all have the same ones; even when we have the same disease in the same areas of our gastrointestinal tract. In terms of food and drink tolerances, it differs from person to person, drastically! Just like our triggers vary a lot!

We are all different, and THAT is the point that I always want to hammer home when people ask questions about a new treatment!

Originally published on InflammatoryBowelDisease.net.