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.

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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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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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Elemental, my dear Louise

I had put off contacting my IBD nurse for weeks and weeks. Things were steadily going down hill, pretty much since the beginning of May. I started to feel unwell soon after my last Infliximab infusion but put it down to the stress of finding a new job and being unhappy at being at home all the live long week. But as the bathroom trips became more frequent, more painful and more full of blood; the more I started to think it wasn’t just stress. It’s so easy to fob yourself off with just something as “undefinable” as “stress” but […]

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Update, GLORIOUS update!

It’s been more than a little while since I wrote a blog posts. I can’t even apologise. My absence is because of my lack of energy. This inherent tiredness is due to taking myself off my medications. No more steroids, no more Mesalazine, no more Imodiums, nothing. At the start, it was scary. One day I just woke up and didn’t see the point of taking anymore tablets. Just stopped everything, just like that. No real reason, no cause for why it was that certain day – I don’t even remember the day or anything, just the vague notion it […]

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Obsessed by Abscess

For the most part, I’ve been pretty typical in my Crohn’s symptoms and presentations. For the most part, I have now learnt – 18 months on from diagnosis – how to manage my pain in order to lead a good life. This might mean popping a handful of pills throughout the day to get my throbbing pain and my joint stiffness into order to work and walk and swim and teach and generally be myself, and that by itself is no mean feat. It takes some getting used to. Like anything does. But lately, things have been heading into the […]

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My old friend; Metronidazole

“If it’s not one thing, it’s the other..” My health feel this way at the moment. Or for at least as long as I can remember presently, my mind has definitely deteriorated. I’m currently in the second round of two lots of medications: ANOTHER round of Pred, as previously mentioned, and a second course of antibiotics for my wisdom tooth. This time, moving on from Amoxicillin, to Metronidazole. I was taking Metro when I was in the hospital for my C Diff infections. I was taking it when I was on Aza, and it is filled with lots of dread and bad […]

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Pred, Pred and MORE Pred.

As I’m sure everyone else who takes steroids or has taken them, the gradual drops in the weekly, bi weekly or monthly doses is met with jubilation. I found myself getting rather exciting to moving from 10mgs to 5mg next week and finally stopping them on my birthday, two weeks away. Sadly, my GI is not sharing my jubilation. I have to continue Prednisolone for at least another 6 weeks. This “interim” “medication free” lifestyle is sucking. Above is my new daily regime. Moving from 10mg to 9mg means FOUR more tablets every morning. Delightful! More hamster cheeks, more chubby legs and more […]

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Polyps and Prep

Hard to believe it’s been over a year since I took my fragile self off to the hospital for them to scan my small bowel. Hard to believe that this year is already flying by and I’m already 7 weeks into my steroid course and due for a follow up next week. But, first things first, I must get my belly scanned. I must, I must, I MUST. It was a pre requisite for getting to see my consultant in April, a small bowel MRI study. It is also the precursor that will eliminate or accept certain treatment plans for […]

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Hard Slog

It is Friday once more. For me, this doesn’t hold the same euphoria as it does to my friends who have Monday to Friday 9-5 jobs. I still have a weekend worth of shifts to complete before I get my “weekend” break. And this week, it can’t come soon enough. I’ve got alot on my mind. But what is new? I’m probably worrying about alot of nothing, but to me, they are extremely troublesome. Firstly: my pain. For once, this is not in my gut but has migrated into my knees, ankles, hips and lower back. I was foolish enough […]

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Disruptions and the ‘bloody bowels’

I’m usually so good with travelling. I’ve never had any major issues with my Crohns in regards to getting around places. Admittedly I’ve never made a trip further than London and I’ve never gone further than Birmingham without somoene else with me. So, to go all the way to St Albans to CCUK Head Office for a training day, I thought nothing of it. I’ve been up and down, health wise, of late. So, imagine my suprise when my flare up rears its ugly head yesterday of all days. I’ve felt slightly unwell for most of the week, but put […]

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Swings and Round-of-sorts.

So, today I stood in the kitchen taking Pred and Mesalazine as if it was the most ordinary thing in the world. To me, it pretty much is now; I’ve been on Pred for just over a month and moved down to the second day of my 15 mg dose. The Mesalazine has been going on for 10 days now. Both are doing something to my gut because lately I’ve been constipated more than ever since my Crohn’s started. And the side effects of these wonderful little chemical doesn’t stop there. When I was on the Pred last time I […]

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The smallest room in the house

You can’t hide from the fact that as IBD sufferers we spend a considerable amount of time in the bathroom. We are taught to monitor and examine our bodily functions in an attempt to grasp a hold on how our condition is going. Bowel movements (BMs) are a good indication of what is going on inside; from the frequency of visits to the types of visits we are having an on regular occurrence. Increased BMs can mean many things: inflammation, infection, bad diet, flare up triggers; where as a decrease in BMs can mean strictures and blockages. For myself, I’ve […]

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What a week, what a waste.

Crohn’s Disease forces alot of people to cease the day and carpe the diem out of the days they have when they feel well enough to function normally. I never used to be one of those people; I suffered greatly with my depression and my acceptance of my diagnosis. These days, I try to do my best to manage my time and disease as best I can. For the most part, I succeed. I have a job and two volunteer positions. I like alot of what I do and what I find out through doing those things. I enjoy learning, […]

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Oh my sore arse. Thanks Pred.

I’m now deep into the second week of Prednisolone. It is a monster. Pred is an IBD basic. Corticosteroids are used to treat any and all inflammation of the digestive tract. They are usually oral tablets, as shown above, and are used a long term course of treatment in early stages of IBD diagnosis and in the start of and / or mist of a flare up. They override the natural system of cortical hormones your body creates in your adrenal gland. The treatment course is set out my GI and / or IBD nurse and patient. Typically, they last […]

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When you literally can’t get out of bed.

On Thursday morning, I awoken in the most excruciating pain I’ve ever experienced. I’ve been pain free in my gut for the best part of a year thanks to the Humira and my general pain has been manageable to a certain level on a daily basis. But starting this new course of steroids and Mercaptopurine last week really threw my body for six. I literally couldn’t move. I was in agony, my back felt as if someone was squeezing and pushing it down at the same time, whilst the pressure in my chest couldn’t be stopped by some breathing exercises. […]

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New Week, New Meds. The life of a Crohnie.

Since I last posted I had a horrible blood test done, after I trekked to the hospital and spoke, face to face, with my IBD nurse about my joints an awful Crohn’s symptoms. I had battled with work and the rest of my life up until Thursday and finally it got too much. She needed to see the pain I was in. Not that I don’t trust her, nor do I disregard the care she can give over the phone; but I was almost at the end of my very long tether. So, after six pokes with a needle my […]

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Nightmares..

It is almost the end of March. I’ve been Crohns symptom free for almost all of March. Besides my blip at work two Saturdays ago, not much has upset my digestive system and even the cloud of Depression has been light and breezy of late. But tonight, out of nowhere, symptoms. Started with that gurgling stomach. Usually in the mornings, but I ignored it this morning. I didn’t have much breakfast – no change there – and had a very late lunch. Snacked before the big Sunday roast. Ate a butt load of lovely yummy roast potatoes, beef, veg and […]

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“SHUT UP WILL YOU?!”

This is what I ended up screaming at my tum last night in front of the tv, with the whole of my family watching me. It was the culmination of a whole day of shitty Crohn’s symptoms. In fact, after this sentence came out of my mouth, I began wondering how bad things were going to get. I had awoke yesterday morning later than usual – normally, despite not working yet, I am like clockwork at waking up, regardless of the day – with really bad abdominal pain. Visit the bathroom. Slight improvement. Fix breakfast, take last of my Prednisolone tablets […]

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