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To finish · 20/22

Mistakes to avoid

Lessons learned from more than 20 years of Crohn's.

Here I share lessons drawn from experience: more than 20 years of living with Crohn's, watching, searching and learning, sometimes the hard way. These are the mistakes I have made or seen around me, so that you can avoid them.

Personal account, not medical advice
Mistake no. 1

Staying alone with the really tough times

Your usual gastro remains your first point of contact. But when things get really tough (one treatment after another without success, complications, an operation being considered), it is a good idea to get in touch with a university hospital team (a CHU, in France): these teams see a lot of IBD patients, work with surgeons, radiologists and dietitians, and have access to trial protocols and the newest treatments. This opinion comes on top of your gastro's, in liaison with them.

Mistake no. 2

Putting up with your disease

Take an “active” stance towards your disease: understand how your body reacts, how your treatment works, and listen to yourself.

Mistake no. 3

Turning up to a consultation without preparing anything

Be at ease with your gastroenterologist: prepare all your questions before an appointment, and don't hesitate to discuss with them a possible change or adjustment of treatment if it becomes necessary (feeling unwell, pain getting worse, side effects). It is important to have a good relationship with your gastroenterologist.

Mistake no. 4

Wanting to stop everything

Quite often, over a lifetime with the disease, you will want to “stop everything”. This feeling is understandable, but the consequences are real: about 1 patient in 2 relapses in the year or two after stopping a biologic, even in remission, and stopping then restarting can make the drug less effective. Hence the importance of psychological support if needed, and of a really close relationship with your gastro to discuss adjusting your treatment.

Mistake no. 5

Letting time slip by

Time is our number one enemy (not the weather, time as in the clock!). If pain or signs of the disease appear, pay attention and react quickly: don't wait 3 weeks before contacting your gastro. The faster you react, the better your chances of “cutting off” the inflammation quickly before it takes hold again.

Mistake no. 6

Masking the pain

Be careful with painkillers (paracetamol, tramadol…). They are useful to ease pain, but pain is a signal, and the painkiller masks that signal. Taking them occasionally and for a short time, or while the long-term treatment takes effect, yes. But if your treatment was started a long time ago, it is not normal to take them often: don't ignore this signal and contact your gastro if it goes on. Tramadol also carries a risk of dependence, and ibuprofen is best avoided.

Mistake no. 7

Sending your gastro a vague message

When you contact your gastro (by email, for example), get all the details ready. The more clues your doctor has, the better they can help you:

☐ Where it hurts☐ Since when☐ Number of stools per day☐ Blood in the stool☐ Fever☐ Weight loss☐ Vomiting☐ Treatment taken
Mistake no. 8

Ignoring a fever

If you have unusual pain or a strange feeling, remember to check whether you have a fever. Crohn's-related pain with a fever is an important warning sign. If there is also vomiting (or a swollen belly, no more wind), call 15 (the emergency medical number in France) or go to A&E. On an immunosuppressant, any fever deserves a call the same day.

Mistake no. 9

Carrying on smoking

Tobacco is a real enemy of Crohn's, and this is genuinely proven: it makes the disease worse, increases flares and operations, and doubles the risk of the disease coming back after an operation. Stopping is one of the best “treatments”, and you can get help: in France, Tabac Info Service, 39 89.

And also…

In short

You are not a spectator of your disease. Well supported, well informed and quick to react, you can live a full life with IBD. And research has never been so active: keep hoping.

The author, living with Crohn's for more than 20 years

Figures: stopping infliximab, STORI trial (GETAID), Gastroenterology 2012 and Gisbert meta-analysis; smoking and recurrence after an operation, Reese meta-analysis, Int J Colorectal Dis 2008.