Advice on Medication? Our Bodies Are All Different.
I run an online Facebook group for people with IBD, and one of the most popular topics is new treatments. Understandably, people want to know what to expect if they've been prescribed a new one, but it's so difficult to answer! Because Crohn's and ulcerative colitis are 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 IBD treatment experience is only 1 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 sensitivity to the sun. That was not particularly a bad thing because it meant I always remembered to use a high-factor sunscreen – a must when taking azathioprine. I began to experience hyperpigmentation on my face whilst taking it, which I had assumed was part of the sensitivity to the sun, but it still happens and I've been off it for years. So, you'll often find me with panda eyes in summer, and a shaded lip posing as a moustache!
There's an increased risk of infections, but I didn’t find that was the case with 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 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 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 of it.
Side effects and efficacy are so variable
The side effects lists in the patient information leaflets are 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 1 week for 1 person 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."
Crohn's and colitis are different for everyone
I find this incredibly frustrating because there's no way of knowing. Our bodies aren't the same, so our treatments won't be either. 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, too – and 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.
How open are you about being diagnosed with IBD?