Deborah’s story

Me and My Crohn’s

Crohn’s Disease was a disease I was familiar with as my sibling has suffered with it for many years. After months of loose bowels with diarrhoea and mucous, coupled with weight loss, I was finally diagnosed with Crohn’s disease. An MRI showed disease presence in both the small bowel & large bowel.

Months of steroid treatment followed, and as per protocol I was tried on Asacol to which I had an allergic reaction and I had to stop it and also started Mercaptopurine.

After diagnosis, treatment with Mercaptopurine and steroids (including Prednisolone, Entocort & Budenofalk enemas) took about 10 months to fully control the disease. With time the Mercaptopurine caused me to have very low white blood counts, which led them to keep having to reduce the dose of the Mercaptopurine. After discussion with my consultant, and because I was feeling better, I decided to take the risk and stopped the 6MP, but a few months later I started feeling unwell again. Biopsies from the colonoscopy showed the disease was active again so I was started on Humira injections which worked fine for a year or so, till I had a relapse from which I am still recovering.

What have I learnt to help me get through this disease:

I am a health care professional and have worked in the hospital and community setting so my basic medical knowledge can often be to my advantage, but as a Crohn’s patient, you know yourself best!

What I find most useful is doing the following:

• You know what food you can eat – as everyone is different. I generally don’t eat most fresh fruit or vegetables, and have had to learn to stick to a low fibre diet and give up most healthy foods. The only veg that seem to go down well are cooked potatoes, sweet potatoes and carrots. Carbohydrates like pasta and rice go down well with me and luckily so does milk – but I know this differs, so try and work out what works for you.
• Listen to your body – you will be more tired than usual so if you need to stop and rest, do what your body asks of you. Some days will be better than others… enjoy those and look after yourself on the other days!
• Keep a stool diary on your calendar – I basically write down every day the amount of times I go to the loo, and especially put a note if you start seeing blood or mucous.
• I also have a medication history document – whenever I am prescribed something, a dose is changed or something is stopped I make a note of it. If possible, also annotate why the change/addition was made so that if you relapse you can see what worked last time and what didn’t.
• Before going to see my consultant I write a list of questions that I want to ask them about – if you start doing this a couple of weeks before your appointment you hopefully won’t forget anything you wanted to ask them, as when you are in the appointment the time flies and your mind will usually go blank, and then you remember everything on your way home which can be very frustrating!