Not colitis after all

Ok, so the title’s not entirely true. I do still have colitis – that’s never going anywhere, unfortunately – but, it now seems that the last eight months of ill health have been the result of fibromyalgia not a colitis flare. 

The diagnosis of fibromyalgia, which was mentioned a few times by my gastroenterologist and also at a first rheumatology appointment, was confirmed by my rheumatologist a week ago today. I knew it was coming, because the rheumatologist had already called to reassure that my spinal MRI was clear and that there was no suggestion of inflammatory arthritis in my blood test results. Even so it was a shock to hear it confirmed. I ended up shedding tears of relief that the symptoms I’d been experiencing since February finally had an explanation, because I knew that my – and everyone else’s – initial assumption that they were colitic in origin was not correct. In fact, my bowel has, throughout, been very well behaved and it just didn’t *feel* like colitis. 

I’ve not really had time to think about it much, because work has been relentless, and I’m still not sure how I feel about the diagnosis. The other options were something I knew how to deal with…autoimmune disorders, like my colitis, with effective treatments that I’ve regularly written about in my work over the last four or five years. Ok so the inflammatory arthritides have long-lasting effects and complications, but they’re ‘solid’ diagnoses. Some of the treatments can also be used to treat colitis – two for the price of one, as it were.

Fibromyalgia, on the other hand, is a wishy washy diagnosis. The name means pain in the muscle and connective tissue, but why it develops isn’t really understood. It produces a vast range of seemingly unrelated symptoms, which wax and wane for no apparent reason. I am positive for at least 12 of the 18 tender points used to diagnose it, but I’m actually feeling the best I have for some time, so I also feel a bit of a fibromyalgia fraud at the moment. Which also perhaps explains why it hasn’t properly sunk in yet. My doctor has advised that I increase my physical activity and exercise ‘aggressively’. I have to take measures to improve my sleep ‘quality’, as there’s a belief that lack of restorative deep sleep may be involved. A low-dose antidepressant may be an option to help with pain and inevitable depression. But it’s all very ‘vague’!

The other frustration is the possibility that the increase in azathioprine dose, multiple courses of evil steroids and a new-to-me drug – sulfasalazine – that was introduced to help my joint problems but makes me nauseous may have been unnecessary. Which also means that the weekly blood tests to monitor my erratic liver function may also have been unnecessary. I’ll only have the answer to this when I next see my gastroenterologist.

In the meantime though, I have been very touched by the good wishes of friends – with and without fibro – and the offers of support and advice from previously unknown people with fibro who have seen my tweets about the diagnosis. Thank you all x

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Life with colitis is a rollercoaster

Colitis wasn’t even supposed to be a subject of this blog, yet it’s become the topic about which I’ve posted most often and is a factor in why I’ve not posted more often on any other subject. I first wrote about it in January when I was fighting cold after cold due to the crappy immune system that is a price I pay for the benefits of my medication. I was also due for my annual check up with my gastroenterologist, which, I assumed would be the usual 10 minutes that boil down to “How are you?”, “Yes I’m fine, thanks”, “I’ll see you in a year then”. For good reasons, my consultant suggested I reduce the dose of my medicine a little, and I agreed. Oh how I wish I had a time machine to jump back to that appointment but with the benefit of hindsight. (The posts about what happened next are http://wp.me/pKSly-j and http://wp.me/pKSly-v).

Anyway, my last colitis-related post was written during a high point of the first few months of this year. I’d increased my medicine to its original dose, taken some time off work, slept a lot and did little else. The result was that I was feeling as close to ‘normal’ as I ever feel, and I was pretty convinced my colitis had retreated back into its cave. I didn’t by any stretch of my imagination imagine I was back in remission, but I did think things would tick along for a while at the same pace and that remission would eventually be declared.

Sadly, it was not to be. I quickly started to feel tired again. My joints began to ache. After a weekend of housework (nothing too strenuous), my hands were so swollen and puffy that I couldn’t grip anything properly. I couldn’t even cross my fingers to hope that this wouldn’t last long. Worst of all for me, my brain started to seize up again and I was starting to struggle with work again. I battled on for a week or so, desperately trying to deny that I had a problem, because I knew that steroids were the next step. I know I’ve mentioned this before, but I hate steroids.

About a month ago, it all got too much again. Ant was colouring my hair and unintentionally said something that upset me. It was nothing major but it was enough. As I sat on the kitchen chair with a curtain of hair draped across my face ready for the henna paste to be applied, tears streamed down my face. Once the dyeing session was over and my hair was wrapped up in cling film (so attractive!), I ended up in the bathroom sobbing, instead of watching the F1 as planned. Ant thought I was having a ‘colitis moment’ and, for a while, didn’t realise the state I was in. He eventually coerced me out of the bathroom, and, after a lot of tears, tissues and talking, he persuaded me to make an appointment to see our GP.

I was determined not to break down at the surgery, and I did very well until I was sat in front of the doctor, at which point the floodgates opened. She looked somewhat bewildered as she handed over a tissue and listened to me babbling. She understood my reluctance to take the steroids but persuaded me to take a short course that could be rapidly tapered down (you can’t just stop taking high-dose steroid tablets – their presence reduces the body’s production of its own vital steroids, so you have to reduce the dose slowly to give the body time to start making them for itself again). I took 6 tablets of 5 mg prednisolone a day for 6 days and then reduced the dose by 1 tablet every 3 days. In total I had to take them for three weeks. (I’ve also been taking aloe vera juice and probiotics, which are reputed to help, as well as being a bit more strict with my incredibly unhealthy low-fibre diet.)

As expected, I felt great while I was taking the steroids. I had lots of energy and felt like doing stuff I hadn’t had any interest in for weeks. I was cooking, reading, tidying the house and doing some family history, and I started to say yes to offers of work again. But it’s a bit like being drunk or taking antidepressants: you feel wonderful, but in your heart you know that it’s not real. The first few days I was positively buzzing. I couldn’t sleep. When I did get to sleep, I woke early and even got out of bed early (very unlike me!). One night I considered booting up my PC and doing some work at 2am. My appetite increased rapidly, approaching that of a small horse, and I have, inevitably, put weight on as a result: about 11 lb [corrected from 17 lb due to brain not working properly] in three weeks. It looks like I may be adding another size to my wardrobe, which has as many sizes as a good high street store. I’ve developed steroid skin, particularly on my hands and face, where it’s dry, papery, shiny and red. My face has also puffed up, giving me the characteristic side effect known as ‘moon face’. I feel horrible about myself – and I certainly don’t see me when I look in the mirror.

All of those side effects – and more – are almost worth it when you’re feeling better, but there’s always a risk that your immune system will kick in again and the disease will have a resurgence when the prednisolone is stopped. So, despite feeling better and looking forward to stopping the steroids, I was also fearful that the disease might re-flare after that last dose. And it has. I took my last tablet on Monday. I went to London for a meeting on Tuesday and hoped that the tiredness that followed the day after was just the result of the long day (12 hours from leaving home to getting back). It’s now Sunday and I’m feeling rubbish. I’ve struggled to get out of bed every day since Tuesday, despite generally sleeping well, my joints are starting to hurt and my bowel is playing up again. So now I have the side effects of steroids but none of the benefits, and I face the prospect of another course after I see my GP again tomorrow morning. I know I could be in a much worse position in many different ways, but I make no apology for the fact that, at the moment, I’m feeling a bit sorry for myself.

What a difference 10 days make

I was at a pretty low ebb when I made my last post. As is often the case, things got worse before they got better.

A couple of days later, I felt so unwell that I began to panic. I couldn’t believe that such a tiny reduction in the dose of my azathioprine – from 100 mg to 75 mg – could have such a major impact on my colitis. As I lay on the sofa with every joint screaming and shuffled around the house like a really old woman, I couldn’t imagine that I’d ever feel better again, and I cried my eyes out. 

My head seemed to be full of cotton wool not brain cells and, after much internal debate, I decided to send back the bit of work that was giving me so much grief and to cancel another scheduled job. It was better to give my client the chance to get the jobs done properly first time around than for me to make a mess of them so that they missed their deadlines trying to get them up to scratch. I felt awful to be letting my client down but I knew it was best for them and best for me. Once I’d made that phone call, it felt like a huge weight was lifted from my shoulders, and I was able to relax into illness without the added stress of work looming over me. I took things steady and didn’t overdo things when I felt good for a couple of hours.

It’s paid off. Ten days later, I’m delighted to be on the mend. I baked some bread yesterday (with the help of my breadmaker) and that’s a sure sign that things are returning to my normal. I’m getting my brain used to thinking again and I’m hoping that I can do close to a full week of work this coming week.

I can hardly believe the difference in such a short space of time, but I’m still taking it gently. I’ve cancelled my plans to do the whole New Model Army Spring tour – I think it would be too much too soon – and I’m not buying any new gig tickets or making any major plans for the next few months. Better to take each day as it comes.

It is wonderful to be in remission from a chronic disease, but it lulls you into a false sense of security. Your brain fools you, making you believe that the condition is under your control. In reality, the disease is still in control of you – it’s just taking a rest and waiting in the wings to pounce. Hopefully it’ll be another five years until my colitis is strong enough to make another almost successful takeover bid.

The price of upsetting the status quo

I went to see my gastroenterologist for my annual clinic review at the beginning of January. Having been on azathioprine for some years now, and with the drug’s long-term side-effects in mind, he wanted to see if we could taper my dose down a little, so that I’m on the lowest dose that will control my symptoms. It’s been a long time since I’ve had any problems with my colitis, so I was pretty confident about reducing the dose by just one tablet every other day and started implementing the new dose regimen that very night.

Fast forward to one month later. It’s the first week in February and I’m off to Madrid to work at a conference for one of my regular clients. I’m out there from early Thursday morning until midnight on Saturday and it’s busy – very busy – seven hours sleep in three days and working the rest of the time. Not hard physical work, but tiring all the same. When I get back I’m pretty exhausted, but nothing you probably wouldn’t expect after such a long weekend.

I give myself Sunday and Monday off and write up a meeting report on Tuesday. New work from the same client arrives on Wednesday – I’m to write a formulary pack for a drug. I’ve worked on both the drug and other formulary packs before, so it shouldn’t be too challenging. Yet I sit at my desk, listlessly moving my mouse around and looking at the piles of resources and information that I’m supposed to be weaving into a justification of the benefits and costs of this product. Just two weeks ago, I would have whipped this background material into a coherent document without too much effort but now you might as well be asking me to run a marathon.

During the week, I have a few moments of utter exhaustion, almost falling asleep at my desk. Alarm bells are beginning to ring, but I tell myself it’s the last remnants of tiredness from the trip to Spain. By Friday, I’m mentally and physically exhausted. Hot spells, cold spells, nausea, joint pain and dizziness are haunting me. I crawl into my bed at 2pm Friday, realising that the chances of me writing anything worthwhile are zero – I tell myself I’ll work over the weekend. I’m still hoping that I’m just overtired from the trip to Madrid – although the logical side of my brain is telling me it is more than that.

I rallied around a little on Saturday, feeling well enough to drive into town to get a Valentine’s card for my husband and attend an optician’s appointment. In the evening we go to an old schoolfriend’s concert and the aftershow party, and I’m still feeling ok. By Sunday morning, though, I’m exhausted again. My joints are aching and swollen – hips, neck, knees, shoulders – and I keep having spells of lightheadedness and nausea. Despite the overwhelming tiredness, I struggle to sleep, unable to find a comfortable position in bed.

The only sensible conclusion now is that I’m having a flare up of my colitis, although my bowel itself is generally behaving itself. I’ve upped my dose to two tablets a day again, but it will no doubt be a couple of weeks before the full effects kick in, so I’m waiting on a call from my consultant for advice.

Today is my 39th birthday – but the way my body is feeling, it might as well be my 99th.

The colds of winter

One thing I didn’t mention as a potential subject for my blog was a condition called colitis. It’s an autoimmune inflammatory disorder that causes ulcers in the bowel. Along with Crohn’s disease, it is an inflammatory bowel disease (IBD). In addition to the predictable grim symptoms, it can have effects and complications throughout the body, including tiredness, arthritis and skin problems.

I was diagnosed with colitis eight years ago after nine months of being very unwell. Fortunately I was not ill enough to be hospitalised, but the symptoms left me feeling unbelievably dreadful and seriously disrupted my everyday life. I soldiered on for months – scared of what was wrong and somewhat embarrassed about talking to my doctor – until I hardly dare leave the house.

My GP sent me off to the hospital, where I underwent a variety of tests, which confirmed the diagnosis. After trying a few different bowel-targeted drugs and the devil’s own medicine – steroids – my gastroenterologist prescribed me a drug called azathioprine. It was originally used in patients who have transplants to stop the body’s immune system rejecting the graft but it also works well in some patients with autoimmune diseases.

Within weeks I had relief from my symptoms and started to feel like a human being again. Colitis is not curable medically (though surgery can cure it) but I seem to be in remission. It took a while, I’ve had a few hiccups along the way and I have to follow a low-fibre diet to control the symptoms of the colitis as well as my irritable bowel syndrome. On the whole though, my life is pretty much back to normal. I love my azathioprine and would fight anyone who tried to stop me taking it, but it’s not without its downsides.

Azathioprine reduces the production of white blood cells – the cells of the immune system that fight infection. Because of this, I have the seasonal flu jab every year and this year the swine flu jab too. Azathioprine can also cause liver damage. I have blood tests every three months to check my white blood cells aren’t dangerously depleted and that my liver is working properly. In the long term, azathioprine could increase my risk of some cancers – though colitis itself increases my risk of bowel cancer.

But it’s the effect on my immune system that provoked this post. Last night I developed early symptoms of my fourth cold this winter. I only stopped croaking from a throat infection a couple of days ago. I’d developed that after a night out in London in mid December. The week before, I had finally shaken off the symptoms of another throat infection that started in mid November – after a night out in London. And so the pattern will continue until spring…when my hayfever takes over.

Last night, bunged up, red nosed, frustrated and tired of almost constantly fighting coughs/colds/throat infections, I wondered whether it is really worth taking azathioprine. Then I thought back to the days *before* and I knew that when I see my gastroenterologist on Wednesday for my annual check up, I’ll ask him for another year with my wonderful drug.