Game of Porcelain Thrones – Crohn’s Disease

An important part of my blog is sharing success stories of my friends and family who suffer from conditions and are experiencing positive outcomes, are in remission or have cured themselves through the use of nutrition and lifestyle interventions.  

This is an honest and frank account of what’s it’s like to have Crohn’s Disease written by my brother-in-law, Luke Alexander-Hill. By doing his own research into the condition and trying out various ways of eating and lifestyle changes, in combination with conventional medication, Luke has found ways to drastically reduce flare ups of his condition and live a full and happy life that’s not inhibited by his illness. A prime example of Empower, Nourish, Transform.

Playing American Football for the Dreadnoughts

Luke’s Story

I was diagnosed with Crohn’s at the age of 10 and it’s been a long road of ups and down since. There is no doubt for me that the key to managing my Crohn’s has been controlling my stress levels, exercise and of course my diet. Eating fresh, homemade, whole food, always dairy-free, and focusing on veggies, complex carbs and protein is the optimal for me. Making sure I was eating a variety of the most nutritionally dense foods I can find, as often as I can, helps keep my day to day life as normal as possible.

In 2011 I started trying to get into shape. I was still sitting around 11-12st and wanted to put on some muscle (I’m now 13-14st). It was at this time that I met my wife Julie who encouraged me to eat better. I found that while I was exercising my Crohn’s was quite a bit better. I found that running was not a great form of exercise for me but I really enjoyed weight lifting. I was eating better to look better but as soon as I realised it was also helping my Crohn’s it was even more of an incentive. I started to see my strength going up in the gym and it became incredibly rewarding. 

The exercise helped my strength levels and helped my body confidence and the food was the key to all that. If I ate badly I couldn’t exercise and that effected my Crohn’s symptoms, mood and my stress levels.

Luke with his wife Julie (my sister)

I started listening to a podcast by Ben Coomber of Body Type Nutrition, where he and his co-host answer lots of questions related to fitness and diet. I found it fascinating and started to incorporate a lot of the information into my own life. I started eating high fibre, high fat, high protein meals incorporating lots of coconut oil, eggs, meat, fish and avocados. I always tried to keep an eye on my Omega 3:6 ratio to ensure that I was keeping a high level of omega 3 in my diet. I started prioritising pasture raised and wild meat/fish in my diet and bought a slow cooker to make meals for work.

The wild and pasture raised meats were a good compromise for my wife who was a vegetarian. While she was pregnant and breastfeeding she decided to eat meat again and knowing she was getting high quality (and high welfare) meat and fish was a relief. Most of my diet is rich in fibre, which is normally advised against by dieticians for Crohn’s patients due to the problems it can cause passing through areas of inflammation or obstruction. I found that as long as the rest of my diet was on point, I could eat up to around 30-40g of fibre a day. This gave me a lot of freedom. Most of the food recommended during a flare was high energy, low fibre and (by accident I’m sure) low nutrition. When I flare up now I eat very plain starchy carbs, low fibre (I juice the veggies I would normally eat so I still get lots of nutrients), plenty of lean protein and a healthy amount of high omega 3 and coconut oil for energy. My diet doesn’t change that much – some of it just becomes liquid. One of the side effects of Crohn’s is poor dental health, so I’ve started oil pulling with coconut oil which has helped dramatically. I was due for a few fillings but the oil pulling has removed the need for them.

For a fair while before my diagnosis I would spend a large amount of time on the toilet. It became a running joke – if you can’t find Luke he is probably on the toilet. I didn’t really suffer much fatigue or tiredness and was an active kid doing swimming, judo and tennis.

When I was taken to hospital it was on the back seat of my parent’s car, lying down doubled over in pain.
It turns out that I had a perianal abscess. This is an abscess that is around the anus and can protrude out (think of it like a lump – a bloody painful lump). If you watch the video about “World IBD Day” you can see that the abscess is an infection as a result of inflammation in the bowel. This abscess was so bad that I couldn’t stand up.

I was rushed into surgery to have the abscess drained. When I woke up I was in pain and physically (not just perianally) drained. The abscess wound had to be packed with gauze, this is to prevent it healing from the outside and instead heals it from the inside. Since that day I have always had a tiny little hole (which is a fistula) there – often jokingly referred to as a second arsehole.

I wasn’t allowed to leave the hospital until I pooed. Not often you can look back on a specific bowel movement aye! It hurt like passing razors. I was holding my Dad’s hand as I did it and he tells me he thought I was going to break his fingers. I had to have a bath afterwards. Another time I remember is when I stood up in the bath on a bit of the gauze that was hanging out and it ripped the whole thing out. It was the most pain I have ever felt in my life.

So the next part of my life was dominated by blood tests, pills, fingers in my bum and colonoscopies. I had inflammation in patches along my small bowel as well as activity in my colon that caused crippling pain. I used to read a lot because it took me away from my body and it was better to concentrate on a book than on the pain.

Over the next 5 years I was on metronidazole (tastes of metal), Pentasa (dissolves in your mouth if you don’t swallow quick enough) and Azathioprine (tiny little tablets). There was another one I can’t remember the name of but I swear to god it was the size of my thumbnail. To this day I can still take a fistful of pills in one swallow.

At this point I was religious but didn’t really take any solace in that. The reason I mention it is because when I was about 16, I went on a pilgrimage to Lourdes with the HCPT (Handicapped Children’s Pilgrimage Trust). I went as a helper to look after children younger than me that had physical and mental handicaps. Whilst I eventually lost my faith in god, the experience changed my outlook regarding my IBD quite considerably. I was pretty lucky really so I should just shut up and nut up.

I didn’t really take any pain meds and I learned that I needed to avoid cows milk as it made me much worse. I also found out that there is a non negligible portion of society that work in restaurants that either don’t believe I’m allergic or don’t realise that butter, cheese and cream are also made from cows milk.

I have never, and I probably will never, take steroids to stop a flare up. Instead of steroids I used a drink called Elemental 028 until the flare stopped. I wasn’t allowed any food at all, only the drinks, of which I needed around 12 a day. The doctor told me most people can’t drink them because of the taste but I didn’t mind it that much as long as I shotgunned them and they were cold. I still remember going on holiday with my parents and taking an entire suitcase of them just for me.  I tried all sorts of flavours; the best was orange or orange and pineapple but vanilla tasted like arse. The longest I was on those drinks was 6 months. While my family and friends were eating food, I was drinking orange and pineapple with a slight after taste of vomit.

About the age of 15, I discovered the Rogue Squadron Star Wars books and I became obsessed with them. Most people I know understand that I am a bit of a geek but this will probably make even you lot cringe a little. One of the ways I dealt with the waves of pain in my stomach was inspired by some of the stories of Jedi in the books. I would shut my eyes and imagine an invisible arm reaching down my throat into my stomach, or intestines (wherever the pain was), grabbing the pain and pulling it back out through my mouth. It was my form of meditation. I would also focus on the area of pain and imagine it calming, soothing and the angry inflammation settling down. Anger leads to hate; hate leads to suffering. So shout out to Michael A. Stackpole for helping me through that. Probably wouldn’t have been able to control it without his books.

So I hit 18 and went to university. I stopped taking my meds (was only on Aza then) and didn’t see my consultant for a very long time. I was pretty much flare free, or so I thought. Turns out I was wrong and just didn’t recognise the symptoms until I was 21. I used to drink copiously and would still avoid dairy if I was cooking for myself but not if eating out. It was at university that I joined the UH kickboxing club. I loved it! I was active again and didn’t really have too many bad stomach issues. However, it was around this time that I started to get non digestive symptoms, things you might not associate directly with Crohn’s. I would get inflammation in my sacroiliac joint where my spine joined my pelvis. It would cause shooting pain down my legs similar to sciatica. I started taking ibuprofen for it (which I shouldn’t have done as it can cause stomach ulcers and trigger flare ups) which helped a bit, not a lot, but enough.

I can still remember specific incidences of sacroiliitis. One that always sticks in my mind was when I was traveling back home on the bus after kickboxing. I was limping already and struggled to get off the bus. I couldn’t walk from the bus stop to my campus bedroom. The next bit is a little blurry due to the pain, but I think I was supported by two other people who got off the bus with me. This pain plagued me for the next 8(ish) years of my life. Sometimes it was fine, other times I could barely walk. I had no idea it was related to Crohn’s. I was still pooping my life out. When I heard that some people poo less than once a day I was amazed. I couldn’t believe it was possible, considering that the first thing I did whenever I walked into a building was scope out where the toilet was.

After my undergraduate degree I moved back home and studied at Chichester university to convert my degree and allow me to become a maths teacher. The leg pain was really bad so I would take up to 3 or 4g of ibuprofen every day.

During a 2 week stint in hospital in 2011

I had lined up a teaching job in Hertfordshire for when I finished my PGCE. I moved in with one of my best mates in Hertford while I was studying. This is where my diet went to absolute trash. I was eating pizza, drinking 3 or 4 times a week and it became normal to polish off a cheese cake, (I know, I know) but I was symptom free. I pretty much didn’t have any issues apart from the odd stink. Not coincidentally this was when I also started “self medicating”. I didn’t start for that purpose but it was a happy side effect – 5 years with no medication, on the worst diet possible, doing a high stress job with no flare ups, crazy right? I started playing American Football for the Hertfordshire Hurricanes (amazing time!) and I also (because I’m crazy) took on a second job alongside teaching during the Easter and Summer breaks at a kids activity camp – that is how healthy (I thought) I was. In reality I was treating the symptoms myself, accidentally. I took up archery and I started wakeboarding with another good friend. It was almost like I was normal.

Eventually it all took its toll and teaching started to stress me out too much, I was working 12-14 hours days and over the weekends, my diet was trash and I wasn’t taking any meds. I ended up in hospital on
10th June 2011. I know this because it was my friend Steve’s birthday.

I started seeing a new consultant, Dr Carter, in Stevenage and he was great. He ordered a colonoscopy and endoscopy to look for inflammation. No one laughed at my amazing joke about doing the top end first or at least wiping the camera between them. There was now over a foot (possibly more) of total inflammation between the small and large intestine (terminal ileum). Once I started to look in more detail it turns out I had Ileocolitis and Jejunoileitis in that I basically had a bunch of patchy inflammation. So while there was a foot of inflammation, it was spread out over a very long distance – this is the reason I haven’t had anything cut out – I don’t see the point. Essentially my Crohn’s affects almost all of my small bowel and also the end of my colon.

Luke in hospital where his weight dropped to 10st (63kg). Luke is now over 13st (85kg).

My inflammation markers were extreme! They tried to put me on steroids but I refused so they offered me elemental 028. I struggled to drink enough of them so eventually they put a feeding tube up my nose. I hated it so much I made them take it out after only 15 minutes and I forced the drinks down. I was in there for about 2 weeks with my parents driving 3-4 hours every couple of days to visit. My CRP levels (inflammation markers) were between 150 and 200 (a normal person has less than 3).

Funny (but also quite sad) story – a lot of patients with mental health issues also have gut issues (connection?), so a lot of my day was spent trying to find the shower or toilet that didn’t have crap everywhere.  At this point they offered me Infliximab or Humeria. I turned it down because of the increased risk of Non Hodgkins lymphoma (doubles the risk).

Not long after that I met my amazing wife Jules. She changed my outlook on life more than anything else. I had much more of a reason to be healthy and not just ‘get by’. She helped me learn to cook because she couldn’t, (I had to or we would starve), manage my stress without covering it up and focus more on staying healthy and listening to my body. I left teaching, we got married and moved out of the area for my new job. My legs still affected me every now and again but I was feeling much better.

Luke and Julie on their wedding day

After moving down south with Jules, I started flaring more. It was no coincidence that I had stopped “self-medicating” when I had the flare up. I had just been to my first Portsmouth Dreadnoughts training session in Southsea and all of a sudden BOOM, perianal abscess, not one but 2. Oh joy. I was knocked out of work for about 2 months and after the abscesses were drained they put in 2 seton stitches in my colon. Have a google if you want but don’t do it at work or your boss will wonder why your looking up pictures of bumholes. They’re still there, every now and again I catch them and it makes my eyes water. I could have them taken out but why bother? They are doing the job (preventing the abscesses coming back) and they only affect my life marginally.

My new consultant (Dr Ellis), put me on Infliximab and Aza with my agreement. This increases my risk of non Hodgkins Lymphoma but on balance it is right for me. Infliximab is a great drug for me and works a treat. It allows me to get back to work properly as well as play football. After about 3 or 4 months I rejoined the Dreadnoughts and spent the season as a starting DE getting spanked by TEs and RTs twice my weight but I loved it. Dreadnought football helped me push through my fatigue and my pain, it allowed me to take out my frustrations and stress as well as giving me purpose in the gym, I started lifting properly, deadlifts are my favourites as well as (incredibly risky with IBD) heavy squats. While my Crohn’s got worse every 8 weeks (that was the gap between my Infliximab infusions) my overall health was great. I hit 90kg for the first time ever. 

This became a lot longer than I thought it was going to be and if you’ve made it this far, hopefully you have a better idea about how Crohn’s has affected one person, even though most of the time I look fine (although, damn good is actually a better description). I don’t normally talk about it in this kind of detail unless specifically asked.

Luke with his friends at a recent wedding.

My condition has no doubt improved with the use of optimal nutrition, exercise and stress management. The support of my family, friends and wife has helped me deal with this pain in the arse (haha). A good support network has been key for me. Without my wife giving me direction, love and support, my family supporting and pushing me to seek help if I need it and my friends helping to keep my outlook on life light, this might be a very different story.  

Categorised in: Nutritious Roots Blog, Real Life