Friday, December 2, 2011

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. 

post signature


  1. I am very glad that you're health is on the up and up, it is amazing what things people can sometimes take for granted. I took a very strong acne medication when I was younger, and now on the television there are lawsuit advertisements everywhere. This particular drug has been linked with many serious medical issues, including Chron's Disease. I am concerned about going in for testing, I somehow put it off even though I know it is very important. The other day I was telling a friend my concern while at work, and believe it or not, he took the same medication and ended up with colon cancer in his mid-twenties. Luckily he caught it early enough.

    I found your blog when I googled complacency. I fear that it is getting the best of me, as arrogant as it sounds. It is important that everyone reflects on how fortunate they are, and how much worse things really could be. I hope you continue to be fortunate, and I wish you good luck and great health.

  2. I can completely understand putting off getting tested, especially when the results have the potential to change everything. I've certainly been there myself enough times. I think I know the medication you're talking about as a friend of mine had taken it as a teenager. It's completely messed up when the medications you take to fix something wind up making you worse than before.

    Thanks for stopping by and I hope that you never develop any complications as a result of taking that medication.

  3. People will never get it, my all time favourite is when people complain about having one itty bitty needle and one vile of blood taken. I've lost count of how many needles I've had and viles of blood the "vampires" have stolen.

  4. Totally agree been there too. I was in hospital with a bad flare up for 3 weeks giving me 100ml of steroids every six hours for two weeks while I was shitting blood. Then tried Infleximab and boom the next day started feeling better and home in a week. So yeah we sort of get used to the fuckin needles even though I hate them :)

  5. I'm going to be starting the same drug in a few weeks....thanks for the post.