Becoming Complacent

In a recent conversation with a woman I am just getting to know I mentioned in passing that I had this transfusion thing next week and wouldn't be able to do anything on that day. She looked horrified, then deeply concerned as I explained what it was and how it worked. I realised that going into hospital every 8 weeks for a transfusion is not normal to most people.

This woman patted me on the hand by way of offering support? condolences? sympathy? and stated that needles were horrible and she couldn't imagine anything worse than having to have one stuck in your arm for a whole day every two months. Then she actually shuddered at the thought.

I see it a bit differently.

Not too long ago I was about as sick as I’ve ever been. I remember telephoning my specialist every day in tears, begging him to admit me (which he did after five days). The surgery I'd had a year earlier had made things worse instead of better. I was in more pain than I ever though possible and could not go more than 20 minutes without needing a toilet including having to get up 6 or 7 times a night. 

After two days of observation, the doctors were all in agreement. Medication wouldn’t work. There were too many ulcers, fissures and strictures and they were too widespread to operate. The only solution: Colostomy bag.

I cried for a week. I pleaded. Anything, absolutely anything but THAT. 

Eventually after three weeks in hospital on high doses of steroids, daily injections, humiliating and excruciating enemas, a couple of strictoplasty procedures and a whole lot of begging on my behalf, they decided to try Infliximab. They weren’t really convinced it would work since none of the other similar class drugs had worked. I guess they just took pity on the poor sad creature who was desperately clutching at straws.

“There’s every reason to believe this will work.” I must have uttered that phrase 60 times a day to everyone who would listen, oblivious to the doubtful looks and words of caution about getting my hopes up. It was too late for that, they were already way the hell up there, it was going to work. It just had to. And work it did. Infliximab seemed to work from the first transfusion. Sometimes I wonder if will power and pure determination is enough to make medications do their thing.

Fast forward to today and I am probably as close to remission as I'll ever get. There's been no talk of colostomy bags or surgery. So to me, these transfusions are far from something horrible or a reminder that I have an illness. Infliximab saved my life and I am very lucky to have these transfusions every 8 weeks.

Every time I have the transfusion I’m reminded of where I was and how far I’ve come. I’m reminded of how bad things have been and that they can easily be that bad again and I’m thankful that, in this moment, I’m healthy. It reminds me that I am alive and well and that things are good and I come away from it feeling revitalised.