There's something about me that I haven't posted yet, and it's something that I have decided to include due to the drastic journey I am about to embark upon.
4 years and 5 months ago, I was diagnosed with Ulcerative Colitis (or for you health freaks out there, Pancolitis).
I have been dealing with the illness, as have millions of others, most days for this time. Luckily I do have some "up" days, but the rest are horrific and I've hidden my emotions and pain well from colleagues and family alike. I hate making people feel down at the expense of myself.
"Where's this journey you're on about Frazer" I hear you saying. I'm getting there, just let me fill in some of the blanks first. I need to build up to it. Also, I must warn you that some of the words used in this may make you want to laugh, or feel funny, I'm sorry. Don't read on if you don't think you can handle it.
It all started at the end of 2012 when there I was minding my own business on the toilet, as you do, when I looked down and saw blood. Not enough blood to worry about, but blood nonetheless. I thought nothing of it, and carried on with my day. Little did I know that it was the beginning of something and that wouldn't be my only trip to the toilet for the day. An hour or so later I needed the toilet again, but couldn't work out why. Maybe I'd eaten something and it was just my body trying to get it out, so another trip to the toilet. This time, a lot more blood, but still nothing to worry about, or so I thought.
This carried on throughout the day, until it got to the point where I thought it best to seek medical attention. Booked my appointment, went in, and was told that I had somehow cut just inside my anus. It didn't hurt, and there was a lot of blood, so I accepted this diagnosis and went away.
My trips to the toilet happened more and more frequently in the coming days, some of which had me on it up to 30 times in 24 hours. Slowly I was getting weaker, to the point where I felt that I was dreaming half the time. So, 2 weeks later and into 2013, I decide enough is enough and make another appointment, this time to see another doctor. He was brilliant - I get in, explain what has been happening, tell him the original diagnosis and he checks me over. The original diagnosis is dismissed immediately, but he's unsure on what could be causing this much blood. Tests are done and I'm told that I'll be contacted in a few days.
Quite right he was, when a few days later I receive a call from the Doctors Surgery asking me if I can attend immediately, so I finish my day at work and head up there to see him. At this point I am beyond weak and in a state that I can't really describe. We talk about how I'm doing and I'm checked again. He has an inkling, but isn't sure. He mentions an illness to me, "Colitis". I've never heard of this illness before, but we lookup the symptoms together and I'm pretty much ticking them off as he goes. He refers me to a specialist as a priority and I strap in for a waiting game. It wasn't a waiting game though, I receive a letter within a few days notifying me of an appointment.
I arrive at the hospital and am seen within minutes. The specialist talks to me about how I'm feeling (at this point it's getting very repetitive) and he explains what procedures he needs to do to check my potential illness. I'm introduced to a procedure called a Flexible Sigmoidoscopy, where they push a tiny camera into the lower part of the colon. He inserts it to take a look and within seconds, slowly takes it back out. He confirms without a doubt I have colitis, but to what extent, he wouldn't know without a further procedure. The next procedure I am introduced to a couple of days later is a Colonoscopy. This is the same as a Flexible Sigmoidoscopy, but the camera is much longer and is able to investigate the entire colon.
The Colonoscopy begins and again, within less than a minute of being inside, he advises me that he cannot go any further without causing harm due to the extent of the colitis. He terminates the procedure and I wait in recovery for him to give me the details of what is wrong with me.
He sits down in front of me and describes the different types of colitis to me. It's always good to find out something new in the world of medicine. He comes to the end of describing left-sided colitis to me and moves onto Ulcerative Colitis. This is the illness that he is diagnosing me with, but as a severe kind with a different name; Pancolitis. At this point I still have no idea what it even is and what harm it can do to me, so ask the main question;- What next?
I'm advised that I need to have an operation, but an operation that could not be done by the hospital due to funding issues (the appointment was with a private hospital covered by the NHS but I was unaware of this). Therefore I had to play a waiting game as to when I could be seen at my local NHS hospital. A waiting game I had no choice at playing.
Almost a month passed before I could be seen by a specialist, at which point my skin had turned yellow due to the amount of blood I was losing, but it was at least a good sight to see a doctor after all this time. I'm in the room for about 5 minutes when he hands me a slip and tells me that I'm being admitted to hospital. Little did I know, it had become extremely serious at this point and they were concerned that my bowel was about to rupture. "Holy Shit" I thought to myself, this is actually serious. I did as I was told and headed down to the admission section of the hospital and was allocated my bed on the ward.
Over the next few days, I was monitored closely, but don't remember much of what happened. Whether that was caused by the drugs or my body shutting down, I'll never know. I could not fault the nurses and doctors for everything they did in the time I was there.
About a week into the stay, I began to deteriorate and the surgeons were brought in as an emergency to see me. They explained what was about to happen and that I would be taken into the theater shortly. In the time it took for someone to come and get me, I had deteriorated almost completely and I had what felt like a very long sleep. However, I woke up, it was day and I didn't feel all that bad. I looked down under the sheets and prepared for what I was about to see, but... nothing had changed. The operation hadn't gone ahead. Bemused, I asked a nurse what had happened and she very kindly told me that a doctor would come and see me shortly, and they sure did. They explained, and this is the confusing part, how I was too ill to have the procedure and that instead they would treat me in other ways until I was better.
After a while of thinking about it, I was a little bit thankful it hadn't happened under the circumstances, but nonetheless it would have prevented my problems further down the line.
At the time, I accepted the treatments they had to offer and started what was to be a very long road of recovery. 6 months to be exact. 6 months of bloating from steroids. 6 months of still feeling weak. 6 months of rebuilding my strength. Eventually I got there and returned to work. Luckily, my colleagues, and the company, are lovely. They supported me through the entire thing and welcome me back with open arms. You'll see just how supportive they are as we go through the story.
Fast forward another year and we reach my next point of failure. By now, I've come to terms with the illness and various treatments, but I'm still struggling. To the point where my body can no longer deal with the twenty-a-day visits to the toilet or the loss of blood. My body has given up and I'm admitted to hospital yet again, only this time I'm talked through the process of surgery and what will happen before, during and after.
I'm a little upset, but with the searing pain and weakness, I have no other option to take, so I agree to it and wait for the ball to begin rolling. Only, it didn't. The two surgeons that were looking after me had argued among themselves over my health and well-being and one of them had decided that I would not receive the needed operation due to my age. I was only twenty-two at this point.
A month later, after an agonising stay in hospital, I was discharged (I think released would have worked better), and it was back to the same recovery as before. Plenty of drugs and a lot of will power, something I have plenty of. 2 months pass this time, again my company and colleagues are as welcoming as ever and I get back to work. The only thing that was keeping me sane. Although my stay at work was short-lived when only another 3 months later, I'm in hospital again.
Same process. No operation. Plenty of drugs. 2 extra weeks in hospital.
At this point I'm getting annoyed. Not at the staff looking after me, they were perfect and couldn't fault them. No, I was getting annoyed with the fact that I could have been fixed a long time ago and already been well on the road to recovery. So enough was enough, I had my last appointment with the surgeon and advised him that I would be transferring to a different hospital in the hope that I could get some sort of advancement on what I really needed. I made the plunge and had the appointment booked in no time at all.
The new hospital were fantastic from the start. I was advised that although surgery was an option, there were other ways I could be treated. Something that wasn't discussed at the previous hospital. The first treatment I tried was an injection I would need to give myself. This was called Adalimumab. I trialed this drug for about 6 months, when I noticed that I was getting a rash on my legs. The rash spread further until it covered most of my body and my joints began to swell, to the point where I was unable to walk.
After a lot of trial and error at the local GP surgery, I'm immediate referred to a Rheumatic Diseases Hospital where I have a short stay while they determine what the Adalimumab has triggered in my body. They come to a conclusion, and it's something I've never heard before; Henoch-Schönlein Purpura (normally referred to as HSP). It could be easily treated with a heavy dose of methylprednisolone, which they started straight away. Within a few days I was beginning to feel the effects and was able to walk normally again. Unfortunately, it has left me with various scars around my body, but nothing to complain about. HSP will normally lay dormant and there is a significant chance that I won't ever see it resurface, so I'm keeping my fingers crossed.
Back to the drawing board we go, and onto the next drug. This one is called Vedolizumab and is administered over a few hours intravenously. I started this in June 2016 and carried on up until the end of the year. I was asked to stop this treatment due to the fact that it had finally been agreed that I would be having the operation, although there was some hope that the treatment was working so we briefly restarted it. Unfortunately though, two weeks into 2017, I began to feel weaker and weaker, to the point where I became unresponsive and was promptly admitted to hospital. This time at the new hospital. The first time I'd ever been admitted there and I was unsure of what to expect. I was in there for no longer than 9 days and I felt much better than I ever had. I still experienced great weakness but had come to terms with the fact that this could effectively be my life. This would be it. Being admitted to hospital numerous times throughout the rest of my life, just treating it the best way we could.
When I came out of hospital, I was told that there could still be a chance that I would have the operation. Something I didn't hold my breath over. But, that brings me to where I am now, and this is the journey I was talking about at the top of my post.
I'm now two weeks into writing this post and it is by far one of the most detailed I have ever written, so please excuse myself if it seems a bit odd to read. Parts were written two weeks ago and the rest in between, up until now. It may also be another week until I post it, but to you (the reader) it won't make a difference. Just clearing the air is all.
On the 30th of May, I received my admission letter and date for my operation. That's right, it's happening. There is no going back and no way they can stop it from happening now.
In 19 days I will be laying in a hospital bed, recovering from my operation. Something that I am excited about, but also extremely scared of. It's ok to be scared though.
My aim is to keep a diary of my progress in the hope that I can look back on it once I have fully recovered, but also perhaps allow an insight for those that are suffering with the condition and pondering the choice of surgery, or even for those that don't have the condition but would like to know the process.
This is a massive step to take, and I have the most amazing support behind me, for which I could not be more appreciative.
This is me signing off for now on the introduction to my health. I would like to thank you for reading my post and hope you will check back in soon.
If you have any questions or would like to know anything else, please drop me a tweet! @Frayzurr