It’s been a little while since I’ve talked about my health. I wrote about having a drink just before the New Year (and I’ve had a few since!), but the main post concerning my Crohn’s was in mid-November. It’s no longer available to view, however; it was a very personal post and at the time I published it I felt comfortable telling my Facebook friends (who are the bulk of the traffic when I publish a new post) exactly what was up with me. I got many messages of sympathy, and I want to thank those of you who did, since it meant a lot to me that the support is there when I need it. Thank you!
But with a few new friends now on Facebook, and a crisis of confidence, I wasn’t so sure this was the kind of information I wanted to be public so it’s hidden for the moment. But that doesn’t stop me talking about the road to recovery I am – hopefully – now on.
In December  I started on infliximab, an immunosuppressant treatment for Crohn’s Disease. This was a long time coming. I’ve been attending a clinic at the Western General Hospital in Edinburgh since the summer of 2009, and despite many many tests, the gastrointestinal (GI) consultants would not make a firm diagnosis of Crohn’s Disease. Two years ago I was given azathioprene and mercaptopurine, both of which made me extremely ill for half the year, but did nothing for my Crohn’s.
Eventually I had to push for infliximab, understanding that there are reasonably high risks of getting ill with either lymphoma or multiple sclerosis (MS) (around 6 in 10,000 risk), but with the hope that it will bring immeasurable benefits to my life.
So every 8 weeks I go into hospital for a few hours to receive an infusion, although it will get down to around 30 mins for the infusion once the nurses are happy that I’m not going to immediately react adversely to it! And it will take possibly 6 months or more to see any benefits. But having said that, I think it’s starting to work; I used to get terrible mouth ulcers (orofacial granulomatosis) but these now seem to have gone. That’s one symptom ticked off the list, only four others to go, so I’m hopeful that this is going to work.
Regarding mental health, I have had lots of ups and downs over the last few months. I started talking therapy again with a counselor after a 5 month break, with a renewed focus on making lots of progression in the next few months.
But I still have my down days. Recently I was on a late bus home from seeing a film and it triggered an old memory of taking a night bus out the airport with a very good friend, to see her off on a ‘plane to a new life. I couldn’t help but wish I was able to rewind my life back to better times.
Sometimes I feel like life is passing me by and I’m missing out on lots of fun things while I’m still young. But I can’t go back, so I have to move forward and try and make the most of what I have; which is hope for the future through drug treatment and through counselling. It’s a long journey still ahead, but at least I’m on my way now.