… I had to decide whether to go or not. I had been out of action and without a social life all through my hospital stays and home recovery periods, I wanted to get out there. But I was afraid. Afraid of being unwell whilst away from home, afraid of the staring people would do when I needed to visit the bathrooms multiple times, the awkward way I would sit if I…
crohns disease
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2013 – Year in Review
This blog turned one year old on the final day of 2013. Those sort of moments tend to allow one to reflected on the past twelve months. When I consider how long and short ago January 2013 was, so much has happened! Here are my highlights: Finally came off the dreaded Humira injections. Created and set up Crohn’s and Colitis UK Staffordshire South group with fellow local IBDers. Celebrated my…
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Overdue: Infliximab #3
Infusion #3 was by far the best of the three. Regardless of the cold and the coughing, I went off to the hospital, arrived and met my IBD nurse. Knew that the team had talked about my status and would have decided by the time I got into the infusion room if I was receiving it. Knew if I would have to wait out the rest of the Christmas week…
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Rough / Cough
This has been a rough one for me, more so than before. I can’t quite remember feeling this awful before, without the bowels going crazy and my body flaring. This, in all sense and purpose, is a cold. But given my immunosuppressed body, it has hit extremely hard; with each day providing me with a new and strong symptom, so much that I finished work on Friday afternoon – after…
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Half way through or half way there?
So, this week I’m half way through my four weeks of this second infusion. This also means, I’m more than half way to my next infusion too. In fact, its 9 days away and honestly. I’m excited. The difference between now and before Inflixmab is huge. And add to this how different I feel between first and second infusion, and now, awaiting the third, it’s quite amazing how this is…
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Infliximab #2
Two weeks came around fast. I could hardly believe it was my bloods check up last Friday, let alone how quickly the weekend came and gone, then it was Tuesday. Time for an all day stint at the hospital, sitting around waiting for time to pass. This time, everything was delayed. I was on a later appointment schedule, so that I could make my already scheduled GI clinic appointment that…
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Infliximab #1
Yesterday was very interesting. I am very used to being at the hospital, the regularity of my clinic appts and my ‘need’ for blood tests within the NHS trust system, I’m there at least once a week some weeks. That being said, it was extremely nerve-wracking waiting to be called into the infusion room. With my regular IBD nurse off sick at the moment, I was handed over to her…
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A bag of nerves
So, tomorrow is my first Inflixmab infusion. This is my second and final attempt at a biological treatment for my Crohn’s Disease. Last December the decision was made, after much discussion and scoping, that I was to stop Humira. I was feeling a mixture of relief and freedom. No more fortnightly injections, no more struggling to get through a 14 day cycle, no more crappy immune system, I could finally…
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“What a waste of my time”
“What a waste of my time” : something I’d spent most of last week, in the aftermath of my routine clinic appointment, saying to myself. I attended the hospital last Tuesday, after hearing of my approval by my current consultant, his replacement and my IBD nurse for me to start Infliximab, for my already scheduled appointment. I was under the impression, from all the conversations me and my nurse had…