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.

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8 thoughts on “Life with colitis is a rollercoaster

  1. Sending lots of love and hugs as always. Hopefully you can get the right balance of meds and be on the up soon.I am crying reading your blog as it makes me realise how much my son was hiding from his Dad and me in the 2yrs he fought colits before surgery was the only option.
    Take care of yourself xx

    • Oh no – I wasn’t supposed to make anyone cry! Just getting things off my chest a bit. I think we all need to do that, it’s just that sometimes it’s hard to open up completely to those closest to you – family and good friends – as you don’t want to bring them down. That might be why I find it easier to be open and express myself on here and on Twitter than I do on FaceBook – because people can choose to ignore me if I get a bit self-indulgent and self-pitying. Thanks for your love and hugs – they are always welcome x

  2. Hugs Jemma… I wish that there was something I could do for you to make it all go away. What kind of colitis do you have? I’m just doing a bit of reading up on the disease now.

    • I wish you could too sweetie! I have what’s termed ‘indeterminate colitis’. It means I have features of both Crohn’s disease, which affects the whole gastrointestinal tract, and ulcerative colitis, which affects only the lower GI tract. And mine is also described as pancolitis because it affects the whole of the bowel rather than just a portion of it. The NACC website (www.nacc.org.uk) and IBD club (www.ibdclub.org.uk) have really good information.

  3. Hi Jemma
    jesus when you read the symptoms of colitis or Uc it doesnt tell you the whole story ,t must be a dailt battle to beat this illness , from what you say i dont have colitis just “generic” IBS .I get horrid tasting burbs (stomach bile) until i am so sick, the vomit comes from the pit of my stomach in like a white paste type goo . once i have been sick (usually at night) i start to feel instantly better and within 24 hours i am usually ok .I have had a couple of episodes where i have been doubled up in pain.Oddly since i have cut LAMB out of my diet completely and reduced my food intake generally i have been ok. since before christmas .
    lets hear some information about your family history as i have been “doing” mine since 1987

    • Just realised how rude I must look not having replied on here – although I think I did on twitter.

      Thanks for your support – it’s very hard at the moment. Four months down the line and, although I have the occasional good day, I am struggling to keep positive.

      I’m also fighting to stay on top of work, having taken on plenty thinking I’d have been in remission by now, so the blog and other hobbies, including family history, have been somewhat little neglected. I promise to do a post on my family history as soon as time allows.

      As for your symptoms, have you been to see a GP? It can’t hurt, and they might be able to help….

  4. Jemma, you poor thing (sends healthful healing vibes from Cromer). At the risk of teaching Granny to suck eggs, Im just wondering about diet, and how what you eat affects your state? I do have a parallel problem to yours. I don’t have colitis, but I have suffered very badly from psoriasis for more than 20 years. I’ve had all sorts of medicines including steroids and even some pretty heavy UV treatment. But then I went to China for a work trip. I’d been there 9 days and suddenly realised that my psoriasis had started to clear up, almost as I watched. It was then I realised that I’d had virtually no diary products since I’d been in China. The Chinese don’t drink milk or eat cheese, and I learn from a Chinese friend that lactose intolerance is more prevalent in China than in the West. So I’ve given up dairy to see if things continue to improve. Soya lattes all round. The connection is that colitis, like psoriasis, is one of those things that’s vaguely connected to stress and the immune system but nobody rfally knows how or why. The only evidence for a connection between psoriasis and dairy products is anecdotal. It’s the 21st century, but you’d never know from how little we know about such things.

    • Thanks for the healing vibes Henry – if you could send a few more when you get a chance, I’d be grateful, as things have been bad this week – not sure if it’s the new medicine I haven’t had chance to blog about yet or the next reduction in steroid dose but I’m feeling pretty rubbish and rather emotionally overwhelmed…again.

      I feel for you on the psoriasis front – I have some allergy and dermatitis issues as a complication of my UC and it is so unpleasant when your skin is itching like mad and you just want to climb out of your own skin. I do a fair bit of work on psoriatic disorders and other autoimmune diseases (RA and AS in particular) and I am aware that there is potentially a common underlying thread, so your suggestion on diet makes complete sense.

      But, my diet is already pretty restricted in part through choice and in part due to my gastroenterologist’s recommendation. The choice part is that I’m an ovo-lacto vegetarian and have been for 25 years. When I was first diagnosed with colitis, they did a coeliac test, which was negative so gluten shouldn’t be a problem, although I do find bread and pasta are causing problems at the moment. On my gastro’s recommendation, because I have IBS and IBD, I’ve been on a low-fibre diet for about 7 years. This means I’m not supposed to eat anything brown or wholemeal (bread, rice, pasta, etc), more than two portions of fruit or veg a day, nuts, pulses, crips, cold potatoes, pickles, … basically anything high in fibre. I believe the thought behind this is that the residual fibrous particles irritate the lining of the bowel, particularly the ulcers and lesions when the bowel is actively inflammed. As you can imagine, it’s a pretty difficult diet for a vegetarian, particularly one who is trying to lose the weight she’s gained as a result of taking steroids, and not the healthiest, with lots of high-fat foods as they’re pretty much all that’s left! I often speak with my gastro about my diet, as I’m concerned that I’m not able to get my five fruit and veg a day and that it’s basically a ‘fast food’-style diet, but he says I just have to make the best of it. Although cutting out dairy might be a good move, I do wonder what would be left for me to eat! Let me know how you get on though, I’d be interested to see if your psoriasis benefits in the long term. x

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