Not the news I wanted

At the start of the month, I spent the best seven days with my family on a lovely holiday to Cornwall. I took the whole time off of work, which I never do & it did a lot of good. We ate a whole lot of fish and chips, went on cliff top walks & I devoured four books. I needed the time to chill out after a pretty crappy week before.

Two days before we left for Cornwall, I had my first appointment with my new consultant, at my new hospital. My original greatly trusted, consultant had moved elsewhere, so I felt it was a good time to get a new perspective at one of the best hospitals. My surgery was done there and it's where my brother is treated, so it made a lot of sense. At the appointment I had a very honest but much needed conversation regarding the disease. After not much more than 10 minutes it was decided that Margaret was definitely going to be made permanent. No going back, rest of my life, permanent. Until now, I have all of my intestines, bowel etc. intact and a chunk of it has just been sat there chilling out. The goal was that the long rest would allow my intestines to clear up and I would be flare free. The ideal scenario was to eventually have Margaret reversed, allowing the bag to go and the disease to be more under control. Unfortunately, this hasn't happened. I knew, going in, that I had a 1-2 in 10 chance of having the reversal but I (like everyone) was confident I might be that small percentage. This nasty disease has other ideas.

Since my Margaret surgery, three years ago, my life has been so, so much better than before but definitely not 'normal'. The rested bowel has not remained flare free causing symptoms to get worse intermittently. These symptoms have been slight and so much easier to cope with than pre-surgery that they have been pretty easy to live with. Recently, however, these symptoms have gotten worse. The inflammation from the perianal Crohn's is bad, I have slight stomach cramps and back ache and my knees react to the inflammation every couple months. Fatigue has also been something that I have had to cope with on a daily basis, this symptom never went away but in the past few months, has gotten worse. I wake up tired, spend days recovering from a busy weekend and need to pace my day constantly. It is by far, my worst Crohn's symptom. The consultant confirmed that had I not had Margaret I would undoubtably currently be very sick indeed. Due to all of this, the fact I have run out of medication options & that despite Margaret I am still flaring, she is going to become a permanent fixture.

Despite knowing that this was probably going to happen & it really not being a shock (as always I went in guessing what the consultant was going to day) it was still a very shitty blow when it was confirmed. This is a much bigger surgery than the first one, (probably going to be a panproctocolectomy) which is the permanent removal of my colon, rectum and anal canal (how lovely). It is, clearly, irreversible. The recovery time is longer, the risks are high and the long term effects are worse. The main consideration is the potential effect on the ability to have children, when you want them. This particular surgery can create a 30% delay in having kids. The good news it doesn't effect how the reproductive system works, if it's healthy to start with it tends to remain so, but it can create a delay when trying. It doesn't effect every woman and doesn't mean 'I'll never have kids' but does mean it can take 30% longer to do so, if/when I wanted to. On the other hand, I know plenty of women who have had this op who fell pregnant straight away, with no trouble at all, having anticipated it taking a while. It's something I have no control over, is not the end of the world but equally something I'm trying no to think about. Working for myself is also a consideration, the operation will hopefully be on my terms and at a time which best suits my life and schedule.

This surgery will be different to the first. Last time, I had a three day warning. This time, I may have weeks or even months to plan it. In many ways, this is great! We all know, I love to plan (think of the lists!!!). The downside is, I have far too long to worry, stress & overthink about it. Now that I know it's happening, I'd rather it was over and done with.

My feelings on the impending surgery are mixed and ever changing, which I think is probably normal and is why I've taken a few weeks to write this. My loveliest, closest friends and wonderful family all know and have, as always, been amazing. This is a big deal, but hopefully humour and positivity will see me through some of the bad days.

The next couple weeks are, unfortunately, filled with tests, scans & appointments, allowing my consultant and surgeon to get a complete picture of how bad the disease is, where it has spread & how long I can hold off on having the surgery done. I'll ensure to document the journey, as always, including the very exciting 'tablet endoscopy' which involves me swallowing a capsule sized camera/light/transmitter device which films my insides as it makes it's way through my body. You read correctly, I AM SWALLOWING A ROBOT.


Over and out.