Week 7 Update

I know what you’re thinking…

How did we get to week 7 – it was like yesterday when you wrote “Calorie Addict“. No it was actually at the start of September. At the time, I’d just done a lot of thinking and writing and thinking, so I had a few posts scheduled.

It has in fact been 7 weeks since I revealed that I was pretty drastically (for my height – don’t get excited) overweight. In fact I was 75.5kgs – a number I was really afraid of putting on paper – but there it is, that’s were I was at. My eating was out of control

It’s important for me to address this before I get into what’s happened – because a “diet” is not a simple thing for ANY chronically ill person. If you have a condition and want to loose some weight – I think that’s great, but it’s really important you do so with the guidance of GP and/or Dietician. If you are chronically ill in Australia you can get 6 sessions with a range of professionals every year – in 2018, my selected profession has been dietician. Not just any dietician though – one that understands Crohn’s, one that understands that FODMAP doesn’t help everyone and one that understands that it’s something I need to do – even though the other medical professions would rather I hover at the higher weight.

Along with a change of eating I’ve been coming off 6-MP which has meant that I have more energy – but also that my arthritis has more of a free reign, that drug has always been a double edged sword for me.

I have doubled my intake of Vitamin D to help with my chronic fatigue and spells of forgetfulness and I was put on another of a long list of oral iron supplements. Alas the iron supplement had the same effect as all the others and really started to trash my digestive system – I was on a half dose for 2 weeks before it became untenable. I have resigned myself to the fact I will have my usual seat at the infusion clinic next round – but it was most certainly worth a try.

My diet has changed substantially. I have gone from giving zero fucks and convenience food, to calorie counting and cooking. Right now we have 30 pre-prepared dinners of various curated types, all of which I love MORE than the convenience food. The are all filled to the brim with vegetables and keep me under 1200 calories a day. I have reduced my sugar and carbohydrate intake which were my killers. I am still drinking – not heavily, but I am having a few over the weekend starting Friday night.

On the rare occasion that my work schedule lets me leave the house, I’m making better decisions when I’m out – and it’s paying off, just slowly. But as my dietician keeps saying slowly = sustained, and she’s a pretty cool chick so I’m stealing that.

My fatigue is far better than it was – I’ve not had another incident of almost falling asleep at the wheel. I would put this down to coming off the mercaptopurine and my change in diet.

I have been able to think more clearly and concentrate for longer spells. I’m also mixing up my words far less – which as been great since I’m running a pretty important deadline at the moment. Again I think that has a lot to do with the mercaptopurine but perhaps more to do with diet – I probably wasn’t aware of how much my diet was making me “feel like a sick person”.

My skin, oh my God, my skin, is fantastic. I have even noticed some of my larger wrinkles fade a little. My skin is firmer and even with my period, no breakouts in 5 weeks – I’m stoked. I’ve even started getting back into my makeup because I don’t have any seething sores on my face to get infected.

My bowel… (WARNING THIS WILL GROSS SOME OUT – SKIP TO THE NEXT PARAGRAPH), I have never had the “one bowel movement a day” lifestyle… until the last two weeks… it’s like magic and it’s contributed to my feeling of all-round good health. I have to put that down to diet and also a change in medication.

My weight – everyone would think this is the most important thing right? I did too at the start – but the other things I’ve just mentioned – wow I didn’t know how much they would change my mood. I feel, for the most part, really good about myself and like I’m getting on top of some things that I’d let slide. But in the good column – I am right on my dieticians target of half a kilo a week and I’ve lost 4 kilos. I am right now 71.5, hoping for 71 next week.

I’ve written about it before – a few times. I have Crohn’s disease (which gets most of my attention) but I also have pretty bad arthritis. I have it in my hands, elbows, right shoulder, neck, knees and feet. I have the joints of a 60 year old in my hands, right shoulder and knees. I do have the genetic component of the disease (my grandmother was bed-ridden with it at the end of her life and my mother is classified disabled now at the age of 80 due to it), I have the Crohn’s which has joint involvement as well and I have had a lot of injuries in my worst areas. I was a national ten-pin bowler almost a lifetime ago and playing any kind of sport at a high level usually deteriorates certain parts of the body. Not being on any control medication – I’m having to be very careful of what pain relief I take. The exercise has been a challenge – one that I’m very very slowly overcoming and with the help of a prescribed and pretty constant course of Panadol Osteo. I do have back ups of Celebrex here if I need it – but in the past when I have taken it out of pure necessity, I have had to deal with a far slower moving bowel. Due to another Northern Hemisphere getaway, I’m being more cautious than normal. The start of a wet spell here might be causing me a lot of grief – but I need the extra help more in minus 35c – trust me.

Would I say it’s worse that normal? Yes. At the 150mg of mercaptopurine a day, my joints felt light, better than I remember them feeling. It reduced my joint pain and swelling immensely. But at 150mg, I went into hospital twice with liver complications, I then went to 100mg… Another hospital admission later I was on 50mg. I’ve just stopped the 50mg. And for all-round-health and wellbeing, it’s been fantastic. For my joints – not so much.

My Rheumatologist is sympathetic to my situation – but there isn’t much he can do. We do short trials of new pain relief but for the most part they always have bowel implications. The auto immune drugs screw with me pretty bad – so a biological treatment is next – and I qualify. But… my main condition is the Crohn’s, the biological treatment needs to be tailored to that, not my secondary arthritis. The arthritis does effect me, sure – but it can’t kill me. The Crohn’s can, plain and simple, that’s my choice.

So there has been a lot of good to come from this “latest” change in lifestyle and sure the joint pain is a bitch – but there is always a trade off, ALWAYS. I have to say while I’m really happy with the progress, I’m more proud of myself. In the last 7 weeks I’ve only had one, single blowout. I have kept to the plan even with people around me eating other stuff in front of me. So points for self control.

One thing I do want to say is… what I was putting in my body was making me feel more like a sick person. I don’t believe in that whole “the best doctors are sunshine and exercise and organic foods and rainbows”, no, bullshit, the best doctors, are doctors. But I have to say… eating regularly and well has been a massive wakeup call. I was actually causing some of my fatigue through poor choices. Perhaps even some of the issues with my cognition were down to my diet. I wanna say – to get a really good baseline of where your health is at – you need to get yourself a good dietician and follow the plan for a few weeks – see if any of your symptoms are reduced or even disappear. You’re still going to be sick – don’t let me kid you into thinking it’s the “cure”, it’s not. But it’s a small and pretty easy way that you can help yourself first…

Until next update where I’m hoping to tell you I’m under 70kgs… that would make my year!

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