Living with Crohn’s Disease – Immunosuppressants, Infliximab Infusions & Mercaptopurine

This is a collaborative post

I have been on immunosuppressants Infliximab (aka Remicade) and Mercaptopurine (aka 6MP) for Crohn’s Disease for over two years now

I was diagnosed with Crohn’s Disease in 2012. You can check out my previous posts here although I document most of it on my Instagram and Facebook so be sure to check those out too. 

I thought it might be helpful to document my “journey” with both immunosuppressants as I know they can make people nervous. 

Before I begin I ought to quickly tell you my background with Crohn’s 

I was diagnosed in 2012. Had a bowel resection in 2013 but suffered an anastomotic leak and septicemia which led to emergency surgery and the formation of a stoma and mucous fistula.

I spent a week in intensive care and in total a month in hospital.

What followed was more surgery (last count was 9) and, more recently, the discovery that I also have fistulating Crohn’s. A fistula is kind of an abscess that can form in various places, mine is next to my anus. Crohn’s truly is a pain in the bum! Fistulas send out branches and can attach themselves to other organs making them difficult to treat. Fistulas are sent from the devil. They are excruciatingly painful and they leak, most unpleasant. I have had several operations on them and I wouldn’t wish that on my worst enemy.

In an effort to get on top of Crohn’s flares and the fistulas it was decided that I should try immunosuppressants. The best combination for fistulas at the time was/is Infliximab (Remicade) and Mercaptopurine (6MP).

Infliximab is given intravenously every 8 weeks following the loading dose of every two weeks.

Mercaptopurine is a tablet taken daily at bedtime.

Before you can start a course of either your consultant will request blood tests to check you are suitable. Then blood tests should be repeated every other infusion to make sure you are tolerating it well. There are some nasty possible side effects that it is important are caught early. 

My personal experience of Infliximab and Mercaptopurine (6MP) 

I have to say that I was on both drugs for two years before it was decided to double up the Infliximab as my anal fistulas weren’t healing as quickly as hoped. I have had the double dose twice now.

Different people have different side effects of both drugs. I take Mercaptopurine in the evening to minimise any side effects but you have to go in to hospital to have Infliximab through a drip.

infliximab remicade, infusion, drip crohn's ibd

Cannula placed in my hand

Side effects of Infliximab

During the first dose of Infliximab you are monitored very closely to make sure you don’t have a reaction. I was given a dose of steroids and an anti histamine to minimise the chances of this. 

You will be weighed and have your blood pressure and temperature taken – this is the case before every infusion.

You will then be cannulated. I am very used to this now and can usually point the nurses in the right direction for my best vein. Sometimes it is in my hand and others inside the crook of my arm. The Infliximab has to be prepared for you as it is based on your weight. The first dose will be done over at least two hours. After this you will have to stay another hour for monitoring. I make sure I have a drink and snacks!

From memory I had two over two hours and then went to one during what they call maintenance.  

I find that my stomach kind of contracts during it but when I’ve mentioned this the nurses have not heard this before so maybe it’s just me! I used to manage to drive myself home but it does make me very tired afterwards. I usually make it until the evening but I am very woozy – and I get the munchies!

I am now on a double dose of infliximab to attempt to zap the fistulas so I have to have it over 2 hours again. I feel a little more woozy having the double dose and it tends to last a bit longer but it isn’t awful and I can cope with it every two months.

How do I deal with Infliximab infusions every 8 weeks?

First of all I have to make sure that I have child care in place. Having Crohn’s, or any chronic illness, as a parent makes you quite resourceful and you have to rely on the help of friends and family.

I also make sure that I have something easy in for dinner as I certainly don’t feel like cooking afterwards. Make sure your phone battery or whatever is charged, or take a good book. It can be really boring otherwise.

I have a bit of a ritual when I go in for my infusion now, I get to hospital early enough to find a parking space (that is a whole other story) then I treat myself to a nice coffee and cake from Costa which I take to my appointment.

I find little things like having a treat to look forward to helps.

Have I had more illnesses since being on immunosuppressants?

No! I haven’t and I have a toddler at pre school and an 8 year old at primary school. 

Taking care of your diet & nutrition 

I have been a vegetarian for almost 30 years, people often ask about being a vegetarian with Crohn’s and as far as I am aware it has had no impact. It is important that you keep an eye on your nutrition though. People with Crohn’s are often deficient in vitamins and minerals and vegetarians and vegans need to ensure they eat adequate amounts of vitamens and minerals to make up for the lack or meat and dairy. I have to take extra vitamin D and have B12 injections. One way to find out is you are deficient is to have nutritional testing then you can use your results to decide what vitamins and minerals you need to increase to stay as healthy as possible.

Please let me know your experiences of Crohn’s medication and feel free to ask any questions 

 

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