Sorry I haven’t updated my blog in a while, things have been pretty hectic!
So my last post was July 2018, at that point I had just had my last infliximab infusion after seeing the consultant. Since then, I have been on no medical therapy at all, this is due to only having scarring in my bowel rather than active inflammation. Having no immunosuppressant in my system has been great! I have been infection and cold free for the last 4 months!
Although I am not on any treatment at the moment, the struggle is still very much real! I still get the daily pain, the fatigue and painful joints. Apart from that, everything is fine!
Back in September, I went up to Hatfield in Hertfordshire, for volunteer training with Crohn’s and Colitis UK. It took me 5 hours to get there which included 1 bus, 4 trains and a taxi! Checked into the Travelodge, and waited. I didn’t know anyone else who would be there. I went down for dinner, and sat just watching. Wondering if the people I was seeing would be there for the same reason. I couldn’t tell. The people who were selected to volunteer have to have experience either living with IBD or has a loved one that has IBD. Looking at all of these day-to-day people, who look just like me, not knowing if they have been suffering as much as I have.
Roll into the next day, we had been told to meet in the foyer of the hotel at 9am and wait to be collected and taken to the Crohn’s and Colitis Head Office. So at about half past 8, I go down and scope the place out, unable to eat breakfast as I was so nervous. Sure enough, I start seeing the people I had spotted the night before. Overhearing conversations, seeing the nerves, they all felt exactly the same way as I did. One thing helped for sure, we were all there for the same reason. We want to help others that have the same diagnosis. I head outside, see a group of 4 people just stood waiting. So, confidently, I waltzed up and introduced myself. These four poor people look back at me and say “Ok?”. Turns out, they weren’t volunteers. I quickly turned on my heel and headed back inside with my tail between my legs.
I loiter around the entrance and finally see the group I am supposed to be with start to gather. So again, I joined, introduced myself nervously, and was greeted by smiles, handshakes and hugs. Phew! We headed over to the office, and of course the ice breaking activities start. *Queue Cilla Black; what’s ya name and where do ya come from?*
Fast forward through the training, it was inspiring to be with so many other people who had the same condition as me, but came from completely different backgrounds. I made friends with someone who works in HR who has had their fair share of troubles, a Father whose daughter really went through the mill with her IBD and a man who was the same age as me, had only recently discovered he had IBD and had emergency surgery to take away his colon.
It was a very humbling experience. Knowing we were all in this together somehow. We had all faced the most traumatic times with our condition, but have all come through the other side. We are all here now to help those who are going through similar situations to ourselves and give the best support possible.
The weekend soon went, and before we knew it, we were all leaving. In a way it was emotional. In just 2 days we had made this strong connection with each other, just over the fact we were suffering. Friends were made that weekend.
Skip through to now, I saw my consultant today. Things arent heading in the right direction. They think my Crohn’s has spread to my large bowel, so I need more investigations. I’ve told my consultant I want surgery as biological therapy just takes it out of me too much. It’s just a matter of time, and waiting for my appointments to come through.
So there, thats whats been going on. Thanks for reading, as always, and i’ll try not to leave it so long next time.