A Spiral of Set Backs

I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away.

So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing my pain well with Paracetamol and Codeine and feeling stronger every day. But all of a sudden, I lost my appetite, had increased pain – so increased my painkillers; of which only Codeine was taking it away [worse decision EVER but more on that later] and started to feel really under the weather. I was determined to get to the Bill Bailey concert me and my boyfriend had had booked for over a year at the start of July and then I could feel awful. That was my goal and I did make it but I felt the burn afterwards. I forced to A&E that Monday morning and I was put back on the surgical ward. I knew there was nothing wrong with my surgery but it was my IBD. I was being sick all the time, I couldn’t eat or even drink anything without being or feeling sick. I spent four days in hospital in which time I had bloods taken, a small bowel MRI – of which was inclusive because I could hardly tolerate the prep liquid I was so sick and generally being fobbed off with one possible cause after another. Eventually, my consultant discharged me with a standard course of steroids, nutritional supplements and an “appointment” for a pill cam – to examine the start of my small bowel – siting that I was having a “reoccurrence of my Crohn’s disease”.

I’m very wary of taking steroids these days – previous issues with potential blockages – so I tentatively took them and hoped they started to do some good but as with everything medical at the moment; they just did me more harm than good. I was still being very sick a week after discharge so I went to the GP to see the duty doctor who wanted to send me to hospital. But twice within a week didn’t seem like it would be for much more than hydration and pain relief; two things I could do easier at home with family encouragement. But once I’d spoken to my IBD nurse that afternoon, we agreed I should stop taking all my current medications – steroids, Adcal, codeine and paracetamol – and see what was causing the problem. It could be a codeine withdrawal you’ve inadvertently started, you’ll need to let that run its course then we can reassess everything else; my nurse stated, ever-so-matter-of-factly.

Codeine withdrawal. The more I mulled this over, the more this made sense. I knew a couple of weeks prior that I needed to really wean myself off it and manage my pain better but I was dependent. The feeling of drowsiness and being tired made me take them on a regular basis and I was able to let my body rest and repair. But what I was doing was letting my body have a free pass on these strong opiates. It makes it very difficult to stop and I stopped COLD TURKEY. It was a dark dark couple of days to begin with and even longer more painful days followed. It’s a period of time which I know I need to be honest and open about but I am deeply ashamed that I had to go through it. I don’t like painkillers at the best of times and knowing surgery was going to hurt – both during and after – I just wanted to feel no pain. That was a mistake. I have regrets and I’m just not in the right place to really examine my psych in my now current dilemma. I’m sure one day, I will.

***

The cold turkey withdrawal lasted three weeks. I feel much better for it and now only take paracetamol for my pain. This though has come with its own problems. Since coming back to a normal plateau; I found my bowel movements increasing dramatically in frequency. They were affecting my sleep – I was up every hour on the hour going to the loo for what was pretty much very little; seen as I was still struggling to maintain an appetite and finish any sort of food I was eating. We thought this was just part of the withdrawal spiral and It would end shortly. But after a week or so I made contact with the IBD nurse again. She suggested it could be a problem with bile salts and prescribed some medication to help me hold onto my BMs but decreasing the water content of my bowels. I know very little about bile salt or my actual bowel function if I am honest – I know more than I did 5 years ago when I was diagnosed but knowing my anatomy is to me somewhat of a catch 22 – knowing too much might make me paranoid but more informed, not knowing means I can function and not over worry about every bad gut feeling – but I do know it is a complication from surgery. I am angry at this point; MY SURGEON DID NOT EXPRESS ANY CONCERNS ABOUT THIS PRIOR TO SLICING ME OPEN. This feeling makes me regret my surgery on a primal level – it’s been one problem after another since then, I want some relief!

So I am taking Questran Light sachets twice a day which makes my stomach hurt and my abdomen swell. I’m also back on my steroids to help aid my appetite but also reduce my inflammation to get me to my next test – another small bowel MRI study in September. This test I know I can do and do well providing I am given slightly more time to get the prep down me before going into the scanner. And if they can get good pictures this time, I hope my consultant can confirm my IBD status – I know its active again but where I am unsure of specifically – and put me back onto medication. On to something that works and helps me get back to my life; which I have been mentally preparing myself for since I woke up from surgery all those weeks and months ago. I am ready to stop thinking about my Crohn’s first thing in the morning and last thing at night. I want my life back. So yes, I am taking it one day at a time; gradually increasing my food intake, my fluids, my medications and hopefully getting myself mentally prepared to do battle. To be that assertive patient I KNOW I NOW NEED TO BE. I can’t afford any more time of being wet and weak and just going along with their plan; I NEED TO SPEAK UP AND LET MYSELF BE HEARD. I NEED TO GET STRONGER AND ASK FOR WHAT I KNOW I NEED. ITS MY BODY AND ONLY I CAN FEEL WHAT IS WRONG AND WHAT HAS WORKED.

FOUR WEEKS AND COUNTING.