As some of you will have picked up from social media I’ve had a tough couple of weeks. At the end of May I was discharged from the wonderful St Mark’s Hospital – my wound had healed, stoma function was great, and aside from a bit more mucus than I would like, all was well. I was exercising, able to do normal things with my family like shopping, walking and pull my weight with the baby and around the house.

We got an allotment which required a bit of digging over, and after some time down there I was sore and achey in places I didn’t know I could be – not too much of a surprise, but the aches didn’t go. When we went back the next weekend and did some planting, the following day my aching was worse, and got worse rather than better through the day.

The body produces cortisol at night, so aches and pains should be at their least in the morning, but mine started bad and got worse. My knees, hips, left knee and ankle, as well as knuckles were sore and slightly swollen. I took myself to the GP who examined me, and ordered blood tests and a stool sample – this was Tuesday. Bloods due Thursday.

On Wednesday morning I could hardly walk, particularly down the stairs, so a further GP appointment was made, and I was prescribed Naproxen, an anti-inflammatory. I had a conversation with the GP about this, because Naproxen falls into the category of non-steroidal anti-inflammatory drugs (NSAIDs) which can increase symptoms of IBD. We decided to give it a go, rather than the steroid route at this time, and I tried to contact the IBD team at the hospital. As the drugs needed to be taken with food I nipped to McDonalds because I Couldn’t face even making a sandwich – I was off work. The drugs kicked in, and Thursday I worked from home to make it easier to get back to the docs for the blood test. Friday the joint pain was subsiding, but as the day progressed there was increasing amounts of blood in the mucus from my backside.

So Saturday morning I contacted the out of hours GP and was prescribed a course of steroid over the phone, and stopped the Naproxen. Prednisilone has a pretty bad rep for it’s side effects, but as an anti-inflammatory it is pretty damn good in my opinion. The bleeding subsided and the joint pain continued to reduce.

Sadly, I’d been unable to make contact with the hospital team – one of the IBD nurses is off sick, and all the consultants secretaries seem to be on leave. On Monday I had a call saying there was a further prescription for me at the pharmacy – the blood test showed a vitamin D deficiency.

So I have been better this week, but all of this has a knock on effect. Missing work. I missed a family funeral on Tuesday because I was too tired to drive to it. I was shattered from not sleeping properly. All of this was hard, but what hit me harder was the realisation that despite the surgery and all the positives that had brought, I am not cured. I am not even in remission. That has hit me hard. I can’t exercise. My diet has gone to rubbish and I’m drinking more. I’m writing this with a bottle of wine, a tube of Pringles and a box of Maltesers.

So I see the GP again on Monday for the full blood results and see what is what.

The battle goes on.

#IBDWarrior #nocolonstillrollin