ONE WEEK TO GO

1 wk to surgery

Seven more days of having all my insides, still inside of me.

Seven more days of this constant, terribly draining pain.

Seven more days in this current chapter of my IBD life.

I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years ago when no Crohn’s medication touched it until I sceptically started Humira. I say ‘sceptically’ but I was dying for some relief after four months of being in and out of hospital.

For me, hospital was always through A&E, never planned. This is all new to me. I’ve met more doctors in the past 6 months than I have done in four years. I know this is serious. Its left me bed ridden and in constant pain, that I am unable to work and most days unable to function like a ‘normal’ person. I am hoping disease ridden parts of bowel gone and the removal of the massive ovarian cyst too, will give me some normality. I’m really hoping.

So what am I expecting from next week?

I’ve had the two procedures explained to me and here is the outcomes; most to least desirable:

  1. Laparoscopic incisions, no strictureplasty, 30 cm of ileum removed, ovarian cyst removed.
  2.  Laparoscopic incisions to start, removal of my ileum, moved to an open mid line incision when he finds adhesions in the small bowel needing to do strictureplasty on them. Removal of the cyst.
  3. Lap to mid line, ileum and strictureplasty. Removal of cyst, adhered to ovary which needs to be removed.
  4. Lap to mid line, ileum and strictureplasty, complications which will mean needing to form a stoma. Removal of cyst and ovary.

I will be quite happy with best case scenario: three small incisions in which they remove my ileum and cyst as planned through those incisions. After that, I know next best case is needing a mid line incision but this means they have found adhesions in my small bowel – as he has said he will have to run it completely to check that there are no further problems; either from narrowing or from the healed fistula – and need to strictureplasty them. Next best case is that plus the need arising to remove my left ovary – if the cyst is bigger and is strongly attached to my ovary. Worst case is all of the above plus the need to give me a stoma. My colorectal surgeon stated this stands at a 10% chance but increases if they need to take more bowel or part of my colon out. He is confident it won’t come to this. I am too. But they are having the stoma nurse come to me on Thursday afternoon in surgical admission ward to mark me up, regardless. I know its procedure, but its abit nerve wrecking, even now. Imagine my nerves and anxiety on the day!

This past week or so I’ve been trying to figure out which part of me is causing this current run of excruciating pain. Knowing that the Crohn’s and the cyst both have the same symptoms, no consultant can tell me for definite which is causing my current pain levels to go sky high. My cyst seems to be echoing that of deep and consistent period pain. My Crohn’s on the other hand is unpredictable abdominal spasms that have meant I’ve lost most of my control over my bowels. Both types of pain have meant I’m unable to sleep through the night so I’m having to nap during the day. I’m unable to eat a great deal and I’m left feeling nauseous more often than not. Let alone the bloating! I’ve been tracking my weight and its plateaued even though I’m eating less. I’m hoping this pain and bloating is remedied by surgery.

I have three options for post op Crohn’s medication:

  1. Antibiotics for three months; my favourite Metronidazole.
  2. Combination of Azathioprine and Allopurinol.
  3. Methotrexate.

At this point, I’m unsure when these would start but I am sure my consultant will be on the ward the day after the operation. They could start me straight away – I’m almost 100% sure the antibiotics would be started ASAP – but it could be on discharge. Depends on the surgery and how long they want to keep me on the ward. Its all uncertain until the day and even then, the day after.

Trying to predict or even control these things is stupid. I know it is. Its doing nothing for my stress and anxiety levels to be thinking about this. Being nervous about surgery is very common and I know relaxing and not getting frustrated or out of control is probably better for me, but its hard to clear my mind. Distracting myself has gotten easier but I just know the next couple of days will be tough. I will need help trying to clear my head. To get sorted for going in and being in for a week. Not knowing what will happen and being unable to control it is… my worst nightmare.

Actually no, my worst nightmare is being put to sleep. Then waking up without part of my bowel or worse. Thats what I’m going to focus on mentally preparing myself for.

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GI Clinic – 05.04.16

It has already been six weeks since I was last in clinic to see my consultant. What’s happened since then? My colonoscopy has been performed and the outcome known by medical and surgical teams at Good Hope as well as the specialist consultant in Nottingham. I have finished up my course of steroids. I’ve been having considerable pain when eating and whilst moving my bowels. This has now resulted in bloating and considerably more fatigue. I went into clinic wanting to know why my MRI from October 2015 and the colonoscopy from last month didn’t quite match up. I was […]

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GI Clinic – 23.02.16

I’ve been due to see my consultant since December. The plan was to have a chat about what appointments I’ve had since we last saw each other, how I was feeling after finishing up Vedo – it was imminent to failure at the end of 2015 – and plan what we would do next. The latter of these three things has filled my mind with questions and full of confusion. I was unsure of what would come from my surgical option, what would come from seeing another Gastroenterologist at a bigger and more research led hospital and what would really […]

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Clinic Trial vs Surgery

With each step of my disease, I’ve become more and more like a squirrel. I’ve become the hoarder of information. Gathering all the relevant nuggets of advice I can in order to make the best and well informed decision I can. This is no truer that it is right now. I’m having to decide between enrolling on a clinic trial and having a surgery to help aid my Crohn’s disease. I’ve looked into both before, not so long ago, before I realistically started Vedolizumab; so probably last summer. I thought, of the two choices, I would happily take more drugs over having […]

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High Five Friday – February 19th

I’ve found the silver lining to taking steroids! Reducing my 2016 reading list!  I’ve been waking up at 4am because my body seems to think just over four hours of sleep is plenty and why not read a good book? So currently I’ve gotten through two more books since the weekend. Oh, and this really made me chuckle: Gotta laugh right?  

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This time last year…

.. I was experiencing my first really serious bout of “on-medication-but-feeling-as-if-I’m-going-without”. I had just completed my first year of Infliximab and I’d made it through Christmas. Boyfriend and I had plans to get away for the February break and picked Cornwall for a week’s holiday. I would have my infusion at the start of Feb and that would usually keep me going for at least a month. Oh how foolish I feel now. February 2015 was horrible. I would still have my Infliximab but I had lost total response to it; I wouldn’t be tested and know this for sure until […]

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Vedo #5 – The Finale

Despite my best efforts, it seems my current run of Vedolizumab is over. This is what happened at the turn of 2015 into 2016: “I’ve finished my loading doses of my Vedo! That happened two weeks ago and was eventful as always – six attempts at cannulation; two of which were blown veins whose bruised still haven’t faded yet – and I spent 10 days post infusion with pain and severe aching muscles. Neither of which have completely gone and neither of which my consultant can fix, it seems. So I await the New Year and with it bring an […]

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Nottingham: Moran and Multiple Choices – 27.01.16

I’ve never seen a different gastroenterologist in a different hospital before. I was full of anxiety and fear of being unable to explain my history to him or to even get him to help me. I was over thinking everything I wanted to say and everything I could possibly say; this one sided conversation with my thoughts and my fears. I’ve had a bad week leading up to my appointment, including travelling to the hospital which isn’t local and is in a new city I’m not used to. As much as I can prepare myself – and I realise that […]

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The end of Biologics: Colorectal Referral – 12.01.16

I saw a surgeon last week. I’ve had Crohn’s for almost four and a half years but this is the first time I’ve been anxious like this in a very long time. It’s certainly the first time I’ve come face to face with a surgeon. It was nerve wrecking. The judgement of my disease and the awkward chit chat my IBD nurse made whilst he read my most recent scopes and scan results – MRI in November and scope in Sept 2013 (27 months ago) – felt like the longest ten minutes of my IBD life. Even more so than […]

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Hello 2016..?

I started 2016 in pain, surprise surprise! I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength. Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I […]

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