Trying to find the right treatment

So, having been diagnosed with Crohn’s disease and having spent two weeks recovering in hospital, surely now I could just take some medication to keep me well? If only it had been that simple! I don’t think I ever thought this, but I didn’t have a true perception of what it was going to be like, living with Crohn’s for years to come. So I just took every day as it came and got through it as best as I could.

As there is no cure for Crohn’s disease, the therapeutic treatments available can only suppress the symptoms, e.g. by reducing the inflammation in the intestines. Furthermore, the problem with the drugs used to treat Crohn’s disease (a lot of which were initially developed to treat other illnesses such as rheumatoid arthritis and certain types of cancer) is that the ones that are most effective (e.g. anti-inflammatory steroids) are too potent to keep taking at a high dose for a long period of time owing to their potentially dangerous side effects. Steroids are also not good to take for lengthy periods when you are young and still growing (which could possibly explain why I am slightly shorter than Dad…). Therefore, as the underlying cause of the symptoms, e.g. the body’s immune system attacking cells in the intestines, isn’t removed, whenever I was weaned off the steroids my symptoms flared up (Crohn’s disease affects different people in many different ways and some people are fortunate to have prolonged periods between flare ups; not me though). So as a teenager it was a repetitive cycle every few months of becoming ill, being put on a high dose of steroids, reducing the dose slowly to wean myself off the steroids but then getting ill again.

Taking steroids was good, though, because they were so powerful and treated the primary symptoms of Crohn’s disease well. I always knew I would be getting better soon and this was accompanied by a signature metallic taste in my mouth, a sign that I was on the road to recovery. My appetite would improve and my weight would increase back to a vaguely healthy level. At my worst I dropped below 50kg but I could never get above 55kg (about 8½ stone). I don’t like looking back at pictures of myself from this time; I look either stuffed full of steroids or painfully gaunt. In the short periods when I was well I would gorge on muffins, crumpets and bagels, as well as chocolate – I often had a whole kilogram bar of Dairy Milk on the go – in an attempt to gain some crucial weight before I got ill again and lost it.

One of the most soul destroying parts of being ill was trying to maintain my weight. Owing to the inflammation in my colon, which gave me pain daily when I was ill, I often had little appetite. I also knew that whatever I ate was going to pass through me rather quickly and so be of little nutritional benefit. But I had to eat as much as possible to stop myself from wasting away, so I would often be at the dinner table, slowly trying to get some valuable calories down me, long after everybody else had finished. Christmas used not to be a time that I particularly looked forward to, because while everybody else wanted to eat, drink and be merry, and there were parties and food galore, often the last thing I wanted to do was to have a great big meal.

Eating between meals (so eating more often but less each time) was a good strategy and I also used to drink high calorie shakes from the dietician, but there were only so many of those you could consume (though I remember collecting boxes and boxes of them from the pharmacy at a time). Occasionally, on seeing me eating lots of high calorie food, I would receive a comment to the effect of, “I wish I could eat what you’re eating and not put on any weight”. If only they knew…  As my body struggled to maintain a healthy weight, particularly when I was ill, I used to lose quite a lot of muscle mass. The (rather unpleasant) feeling of my body eating away at its own muscles because there was no fat left was always a tell tale sign that I was getting quite ill and had lost a lot of weight.

Another Catch-22 situation with being ill was constant fatigue. This wasn’t just feeling exhausted from a bad night’s sleep and being able to catch up the next night, this was lacking energy and feeling lethargic all the time, and never being able to get enough sleep to overcome this feeling. What made it worse was that when I most needed a good night’s sleep, this wasn’t possible because I was having to go to the toilet so many times (often quite painfully) that my sleep would be disturbed as a result.

To try to avoid taking too many steroids, my gastro doctors at the hospital were always looking to see if different treatments would suit me.  However, because different people with Crohn’s respond to different treatments in different ways, this is very much a process of trial and error. I tried different steroids (budesonide rather than prednisolone), other inflammatory drugs such as mesalazine (and different formulations thereof), immosuppresants such as azathioprine and methotrexate, etc.. There was no magic bullet, with some drugs working better than others or some working initially and then losing efficacy. I also tried different dietary regimes as this appeared to alleviate the symptoms for some people.

For a while I drank UHT milk (there were suggestions that mycobacterium paratuberculosis in cattle may be linked to Crohn’s) and then soya milk to cut dairy out of my diet completely, but neither of these had any particularly beneficial effect for me. At one stage I went on an elemental diet where I just drank cartons of a fluid that contained all my dietary requirements and needed very little digestion. Needless to say, they didn’t taste great. The theory was that this would give my insides a break, the inflammation would subside and then I could introduce different foods one at a time to see if anything was triggering my Crohn’s. I didn’t get as far as this because the initial drink didn’t work for me. I remember vividly coming home from seeing my consultant where we concluded that the elemental diet wasn’t working, sitting on my bed and tucking into a chocolate bar. It tasted great!

Despite all of this, I still was doing well at school (I received decent GCSEs and A-levels (including lots of extra maths papers just because I enjoyed it, resulting in 2½ A-levels in maths)) and so gained a place at Oxford to read Physics (I still remember the day I received an offer letter from Jesus (College)!). At sixth form I started running cross country again though it was very hard to keep up with everyone. When I was younger I never particularly used to train but I was naturally suited to running and so used to be relatively competitive. But at sixth form I struggled as I had lost both my fitness and strength, although I still enjoyed the races, often on freezing cold days through ice and mud, returning with hands so numb you couldn’t undo your shoe laces!

I also don’t remember getting down too much about being ill most of the time at this age. I still wanted to do everything that I was doing and wouldn’t let my illness get in the way. The only real time I would get frustrated was after hospital appointments (I remember a few times coming out and punching the wall) when I felt things were just going round in circles – deep down I knew the same treatment wasn’t going to work again and in a few months I’d be back unwell.

Mark

Training for this week: 4 runs totalling 47 km and a 1700 m swim. A good week with some hard sessions, so I’m looking forward to an easier week this coming week (“to allow for adaptation” according to my training plan). My long run this morning was particularly beautiful: a hard frost over Portmeadow and mist hanging low over the river as the sun rose. Very peaceful too: just me and a few other equally fruitcake runners and rowers.

Monday: 11.5 km in 52 minutes

Wednesday: 10.1 km in 45 minutes

Friday: 9.1 km in 40 minutes

Sunday: 16 km in 74 minutes

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