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
Monday 25 July 2016
Monday 18 July 2016
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.
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.
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