My Story – Crohns Disease – Part 2
In Part 1 My Diagnosis I wrote about getting diagnosed with Crohns disease and now I will give a brief history since then.
Over the years since I was diagnosed with Crohns disease in 1996 I have had multiple flare-ups, several of which have resulted in stays in hospital. I class myself as being lucky because I normally have 3-4 years between serious flare-ups. I still have bad days and sometimes bad weeks but I don’t class them as flare-up, for me a flare-up has to be 2+ weeks; that maybe why I end up in hospital when I have a serious flare-up.
My first serious flare-up was my own fault and I say that because as a teenager I thought I knew better than my consultant and decided that because I felt good I would stop taking all my medication. 2-3 months later I ended up in a flare-up, After a short hospital stay I had an 8 week course of prednisolone and since then I have taken the medication the consultant advises.
My worst flare-up
In August/September 2003 I swapped job’s and lasted just 4 weeks before I started to flare, as I was on probation still that was the end of that job. I started off with a 10 week course of prednisolone which helped at the start but as my dose went down my symptoms started to come back, I finished the course of prednisolone just before Christmas 2003 and managed to have Christmas dinner at home but it didn’t last long. A few days later I was admitted to hospital and I was given 2 weeks worth of IV steroids, Antibiotics and fluids in 3 days due to being so bad. At this point my weight had dropped to around 6.5 stones (41kg), again I was given Ensure plus drinks to help. Due to the severity of my flare-up I was given the choice of surgery or try Azathioprine which comes with its own risks and side effects. I chose to try Azathioprine as I wanted to keep surgery as a last resort and the benefits outweigh the risks for me but I was told if it didn’t work then it will be surgery.
I left hospital with another 4 months of prednisolone and also azathioprine to go alone with my pentasa. I was told it normally takes 3-4 months for azathioprine to be fully working in your system, I started seeing results after 6-8 weeks. Thankfully I didn’t get any major side effects. I did get a small amount of nausea which I cured by making sure I had something to eat when taking my medication.
I spent the next year signed off work recovering and thankfully azathioprine worked and put my Crohns disease into remission. Since taking azathioprine my flare-ups have only been minor and normally fixed with a short course of prednisolone, well until this year (2015) where I have been in a flare-up since January but I will discuss that in another post.
Anyone with Crohns disease will know that some foods will make them worse so I was refereed to a dietitian to help me work out what foods where causing me problems and to make sure I was getting all the nutrient I required. I had to keep a food diary listing everything I eat and what effects it had on my symptoms. We discovered that dairy products, nuts and fruit or veg were a no no for me, I was tested for lactose intolerance but that come back fine so I avoid all dairy products now. We didn’t identify any other foods that aggregate my symptoms but I must say I didn’t eat any fruit or veg before anyway.
I have since found when I have a flare-up a lot more foods are a no no but once out of the flare I can eat them again. Over the years I have found my safe foods when flaring are; Baked chicken, Boiled potatoes, Rice, Rice krispies, Bread, pate, jelly, chicken cuppa soup and some baby food if I get really bad.