Hey hey hey,
So, following the unfortunate news last week, things have developed rather quickly. Just a few days after my last post I started to feel really rather poorly, I was exhausted with a high temperature. After two and half days I decided to contact the IBD nurses at my hospital. With a series of tests already booked and with things set in motion for the next 3-4 months, I didn't expect that much would be done, with the possible exception of some antibiotics. Alarm bells did start to ring, I knew this wasn't normal and things had gotten worse.
Whilst the email discussions went back and forth, my temperature got higher, peaking so far at 39.2 but never really dropping below 37.6/37.8, I also discovered a fistula (an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs.) Either way, it was nasty and caused by an abscess, clearly where an infection and why I was feeling so terrible. I updated the nurses again and an emergency appointment was made for the following day with my surgeon. Until then, I had been waiting for a routine appointment letter to come, and still didn't have all my test dates through, so things had definitely stepped up a gear. The morning of the appointment, I had gone through a good five days of feeling pretty terrible & really not sleeping well, it was safe to say I looked horrendous (a kind nurse described me as 'a bit peaky' which I could almost take as a compliment, given the state of my face).
I went in with my Mum to see the surgeon, really not sure how it was going to turn out. Last time he offered to do the surgery that evening, so I was preparing myself for any eventuality. We went through the symptoms, the tests I had upcoming and how things had progressed in the three weeks since I'd seen my consultant. He then had a 'look' (always a pleasant experience) before sitting down to give his view. He agreed that a panproctocolectomy was needed but that before he could do it, he would need to see what he was getting himself into and have the results of a few tests. It was at that joyous moment, with bells ringing and angels singing that he cancelled my colonoscopy.
For those that don't know, following a very traumatic colonoscopy experience four years ago, all of the procedures since have been done under general anesthetic, ensuring I was completely asleep throughout. However, after moving hospitals, my new consultant decided it was best for him to complete the test himself and therefor it could only be done with sedation. Now for most sedation works wonderfully, my brother for one falls asleep straight away. I however, have never fallen asleep and remain awake, remembering and feeling everything. That alongside having very painful, inflamed perianal Crohn's makes for quite a nasty experience. Since the news that I would have to go through with the colonoscopy, I have been sick with nerves, unable to comprehend how I was going to get through it. The knock on effect of the experience four years ago has been huge and although my consultant was incredibly kind and reassuring I couldn't help but feel genuinely terrified. It may well have gone ahead with no problem at all (colonoscopies are a very routine procedure), but I wasn't sure I'd be able to stay still long enough for them to try. So when my surgeon announced this would no longer be happening, I very nearly jumped out of my chair and did a little a dance. In fact, when he did briefly leave the room, I did a little chair jig.
Instead of the colonoscopy under the sedation, due to what a state the area is in, how much pain I'm in and the fact the surgeon wants to have a look before surgery, I will be having an 'Investigation Under Anesthetic'. They'll get the info they need, whilst I'll be none the wiser. The robot tablet swallowing that I was so excited about was also cancelled, which I am disappointed about but the MRI does remain. Both of these tests are happening back to back, this Thursday and Friday. After which, he will book my surgery for August.
My surgeon gave me all of this news alongside my consultant (who was now also in the room), both gave me a sympathetic look, waiting to see how I was going to react. I, meanwhile, was beaming (with the colonoscopy news) and said something along the lines of, "To be honest, just cut it all out, as soon as possible." I think they thought I was insane and at any minute would collapse in a mass of tears but I instead left with a big smile on my face that I would never, ever again have to have a colonoscopy. The news of the op, was not new and the fact it is happening sooner, rather than later is a good thing and means I won't have to feel this poorly for too long. It's going ahead, and there is nothing I can do about it. I also strongly believe that going in to these things with a positive attitude can work wonders when you're recovering. The whole life long ostomy thing is something that will take time to get my ahead round. The operation and recovery, however, I feel a bit more ready for. The whole thing is pretty overwhelming and I have very low moments but the incredible support from my family, friends and complete strangers has been so wonderful. To those who have arranged to visit, offered to help me with Chroma or simply messaged me, thank you so much.
Onwards and upwards
G x
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