IBD Treatment Can Be Really Rough

Note: These descriptions are based on my personal experience with a variety of treatments as an ulcerative colitis patient. Always remember to speak directly with your doctor about your medications and their potential side effects.

As patients, we often get used to the treatments and the side effects that we have to take to get rid of our Crohn's and colitis symptoms. It just becomes part of our life. I always just thought of it as a necessary evil.

Because IBD is immune-mediated, the treatments usually aim to alter our immune response in some way. Altering our immune response often makes it more difficult for our bodies to fight off bugs, which might cause a healthy person very little trouble. This means having to avoid anyone who has a bit of a cold, "just in case," during cold and flu season, which can be very isolating.

IBD treatment via steriods

Things like steroids can help get the disease under control quickly, but the side effects can be awful. Prednisone/prednisolone is often given to help get a flare under control, giving a maintenance therapy time to get into our system. There’s a huge range of side effects, including psychological symptoms such as suicidal ideation, mood swings, delusions, hallucinations, depression and anxiety. Insomnia and increased appetite are pretty common, too, so it’s not unusual to hear us talking about having a cleaning frenzy in the middle of the night, followed by a roast dinner!

Then there are physical changes that can make us feel bad about ourselves, which can again lead to isolation: Acne, weight gain, increased hair growth, and moon face. Then there’s the longer-term repercussions; weakened bones, adrenal insufficiency, and thin skin. Doesn’t sound like a whole lot of fun, does it? It’s not...

Rectal medications, thiopurines

Steroids and some of the aminosalicylates (like those containing mesalazine) may need to be administered anally. Yup, that’s right. Up the bum! Of course, that comes with its own issues. It can be pretty undignified, as well as uncomfortable to do, and often difficult to hold in.

Thiopurines such as azathioprine (Imuran) and mercaptopurine (6MP) are taken orally, but they come with risks, too. There’s an increased risk of certain types of cancer (skin cancer, lymphoproliferative disorder), which is pretty scary to know! It’s best to just stay out of the sun, but we obviously can’t be expected to do that 100% of the time, so our instructions are usually to avoid excessive exposure to sunlight, wear protective clothing, and use protective sunscreen with a high factor.

It’s also really important to avoid coming into contact with anyone with shingles or chickenpox because the risk of developing a serious condition called macrophage activation syndrome is also increased in the event of contracting these. Overwhelming, right? It continues...

Common IBD treatment options

There are many other different types of treatment:

• TNF inhibitors (biologics) such as Humira (Adalimumab), Golimumab (Simponi), and Infliximab (Remicade)
• JAK inhibitors such as Tofacitinib (Xeljanz)
• Monoclonal antibodies such as Ustekinumab (Stelera) and Vedolizumab (Entyvio)

Tests are often required before even starting some of these treatments, such as blood tests and X-rays, to check for things like TB and hepatitis B. This often reinforces the feeling that what you’re about to start putting into your body is heavy stuff.

Tofacitinib is taken orally, which I always find the easiest route of administration. Adding another tablet to take to my already large quantity is hardly noticed. Again, the list of potential side effects can be scary: pneumonia, shingles, high blood pressure, tuberculosis, kidney infection, some types of skin cancers (non-melanoma-types), etc.

Bioloic infusions and injections

Biologics might require a hospital visit for an infusion, or they may be administered via self-injection at home. Learning to inject yourself can be a scary prospect, and going from being well to having to take control of your health in such an involved manner can feel overwhelming and intimidating.

IV infusions can be a pain because they can take hours out of your day. I felt that they were a huge disruption to my life because I had to use annual leave for the time off work, and the commute there and back was a two hour round trip! I hated using the toilet on the ward because I was paranoid about the noise and smell, which just added to my distress!

Of course, scary possible risks are included for biologics too: drug-induced lupus, fatty liver, heart attack, neuropathy, stroke, increased risk of getting lymphoma, leukaemia, melanoma, and liver and kidney issues, to name a few. I could go on, but honestly, I’d really rather not. It’s scary sh*t.

Side effects that amplify Crohns & colitis symptoms

With most medications come general side effects such as allergic reactions, but many of those side effects echo what we’re already experiencing as symptoms with IBD anyway:

• Fatigue
• Nausea
• Changes in bowel habits
• Headaches
• Vomiting
• Diarrhea
• Indigestion
• Abdominal cramps
• Insomnia
• Anaemia

And we just take it all on, because the risks of leaving a flare untreated seem worse. It’s just how our lives must go now.

Overall inconveniences with IBD treatment

More generalised issues with taking medications to treat the symptoms of IBD are things like having to take them with food, and reorganise your day a little around them. Some, you can’t take at the time same time as others – just to complicate our lives further! Remembering never to leave the house without a pillbox full of different medications needed at different times and in different situations becomes a ritual.

To top it off, certain treatments aren’t recommended if you intend to start trying for a family. It’s always worth talking to your specialist at the time of discussing options, with the assumption that the treatment will get you on the path to being well enough to try.

It’s worth pointing out that just like most things IBD, reactions to each treatment will vary from person to person. Not everyone experiences the same side effects. Some people can escape with no negative repercussions at all! But, for the rest of us, treatments are at the very least, annoying!