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HIBD Horizon

Part 2 · Getting treatment today · 4/22

Good habits

What to do, what to avoid, and when to worry.

Do

Get your vaccinations before a biologicFlu, pneumococcus, Covid, shingles, hepatitis B, HPV… Live vaccines (MMR, chickenpox, yellow fever) are given at least 4 weeks before treatment.
Keep track of your calprotectinAlways at the same lab, so the results can be compared with each other.
Have your stores measured every yearIron, B12, B9, vitamin D, zinc. See the sheet “Tiredness”.
Protect your skinSunscreen and check-ups with a dermatologist while on an immunosuppressant.
Have your surveillance colonoscopiesThey protect against colon cancer.
Claim your rightsIn France: ALD (long-term condition status, with 100% cover) and the afa's “Urgent toilet” card.
Prepare your appointmentsWrite down your symptoms and questions before the appointment.

Don't

Take ibuprofenAnti-inflammatories (NSAIDs) can trigger a flare. The habit: paracetamol.
Stop your treatment because you feel wellIt is the treatment that keeps you in remission.
Stay on cortisone for months, or stop it suddenlyIt helps out in a flare, nothing more (bones, weight, diabetes, eyes…). And it is always reduced gradually.
Take a medicine without mentioning itExample: allopurinol (Zyloric) with azathioprine is dangerous unless the dose is adjusted. Always tell the doctor and the pharmacist what treatment you are on.
SmokeWith Crohn's, smoking makes the disease worse and increases the risk of an operation.
Have a live vaccine without adviceYellow fever, MMR… should be avoided while on an immunosuppressant.
Block a severe flare with an anti-diarrhoealEspecially in UC: risk of a serious complication of the colon.
Believe in miracle curesNo diet or supplement replaces long-term treatment.

Warning signs

I keep an eye on it

Usual mild discomfort, slight tiredness, one or two more stools than usual.

I call my gastro

A flare that has been building for a few days (blood, pain, more stools), pain or swelling near the anus. Fever above 38.5 °C or chills while on an immunosuppressant: advice the same day.

Emergency

High fever with severe pain. Swollen belly with vomiting, no more wind or stools. Heavy bleeding or feeling faint. 6 or more bloody stools a day, especially with fever or a racing heart. Painful red eye, swollen calf.