My Disease: The ins and outs of Steroids

Wednesday, 15 August 2018

My disease is Ulcerative Colitis and it is going to be mine forever! 
The time feels right to start raising awareness and sharing my story because my disease is not  going anywhere, and it certainly is not going to beat me. Please don't let the title of 'My disease' scare you off because I want these posts to be knowledgable, helpful and informative. Having a chronic disease has become part of daily life to me, I want to write these posts to share my experiences and not feel isolated throughout.


Todays post is all about the ins and outs of steroids, what they are and my personal experience with them. If you aren't familiar with medical steroids then you're probably a bit confused. To answer your first question no, I am not taking the same thing as gym lovers do to bulk up their muscles it's a completely different thing! 
Steroids are something I have a love/hate relationship with and unfortunately, have been part of my life since my Colitis diagnosis in March 2017. I always talk about being on steroids and feeling well but I don't think people really understand the ins and outs of how they work, so hopefully after reading this you'll understand!

What are steroids and why are they used for IBD?

'Steroids, also called corticosteroids, are anti-inflammatory medicines used to treat a range of conditions.' - NHS
The scientific explanation behind it all is rather confusing to me but in basic terms I think this is a good explanation...
Steroids are man-made versions of hormones of which are usually produced in your adrenal gland. When steroids are taken in doses that exceed the hormone levels in your body, they begin to suppress inflammation. Due to this, they are used to treat a range of inflammatory conditions such as Ulcerative Colitis!

There are a range of different steroids used to treat IBD; prednisolone, hydrocortisone, budesonide and many more. I honestly don't know the difference between each one because they all kind of do the same thing (I think), all I know is they can be taken in different forms. The most common way to take steroids is orally however,  you can also take it as an enema/suppository and when in hospital you can be given it intravenously through a drip if you're in a serious flare up. The dosage of steroids always depends on the severity of your disease so it varies from person to person but the goal is always to not NEED steroids.


Steroids pretty much get the job done in Crohn's and Colitis as they reduce inflammation however, people don't understand that they are only a short-term treatment not a long-term solution. The average course of steroids is around 8 weeks however depending on your situation it can last longer but it's not recommended as the side effects worsen with time. Steroids make your body stop making enough of its own steroids to maintain vital functions like blood pressure, this means that a sudden withdrawal from them causes a sharp fall in blood pressure and affects blood sugar levels. Due to this you have to slowly taper off steroids to allow you're body to function correctly again, you can't just miss a dose or suddenly stop.
 To sum things up steroids lessen the disease activity but they do not put you in remission.
They come with a looooooong list of side effects and complications which I'm going to chat about now...

Side effects 

Like any medication there is a risk of developing side effects and when I say there is a looooooooong list of side effects I really do mean it. I won't talk about them all because there is way too many but if you're interested in details I'm sure google can supply some answers! Now the side effects can be developed into three categories; early effects, effects due to prolonged use and effects from coming off steroids. Personally I've experienced an array of side effects from my steroid usage which is why I have such a love hate relationship with them but I'll talk about that later...

' Early effects- Insomnia, cosmetic changes, retention of salt, mood disturbance, indigestion and glucose intolerance.

Effects due to prolonged use - Increased risk of infection, increased appetite, cataracts, osteoporosis, problems with blood supply to the top of the thigh bone and muscle weakness. 

Effects from coming off steroids - Adrenal insufficiency (this includes fatigue, loss of appetite, weight loss, abdominal pain, vomiting, headache, join pains, dizziness and fever. '
 (Information from Crohn's and Colitis UK)

Obviously with any medication comes a risk of side effects but steroids for me have been the worst causer of side effects.

My experience with steroids
Having been diagnosed with Ulcerative Colitis for 18 months now, I have spent the majority of those 18 months coming on and off different forms of steroids as my disease was constantly flaring. It took me a while to understand the ins and outs but now I think I've got to grips with what steroids actually do to me.

My first encounter with steroids was straight after diagnosis in April 2017, I had a months supply of Pred-foam enemas but honestly I don't really remember them having any effect on my disease or my body. I was pretty clueless as to what was going on as I'd only just been diagnosed but I do know nothing got better.

In May 2017 I first encountered Prednisolone which is oral steroids or steroids in tablet form, I was put on 20mg over my exam period to sort of get me through until other treatments could be discussed.    As my disease was very new to me I can't really recall many noticeable side effects at this point, I was so ill with my Colitis that that just consumed me completely. I didn't know what was caused from my disease or what was caused from the steroids.

Unfortunately, being on oral steroids throughout May and June didn't really have much of an impact and by July 2017 I was admitted to hospital and put on IV steroids of Hydrocortisone. I spent 5 days in hospital receiving around 400mg of steroids (I think) through infusions at set times, I think it was 6 hourly but I'm not 100% sure. Throughout July, August and September I was slowly tapering off steroids and eventually came off them beginning of October.

Now at this point I had been taking steroids since May meaning I had been on them for almost 5 months which was a long, long time to be on steroids. During these 5 months the side effects became a lot more prominent and the steroids definitely took over.
Firstly my moon face was growing daily, people say they didn't notice it but when you compare pictures you can really tell how different I looked.
Secondly I gained a lot of weight. Over those 5 months I put on about 1 and a half stone which completely knocked my confidence but there was nothing I could do about it. My appetite dramatically increased, my disease was still flaring and I had no energy whatsoever to be exercising so the pounds just piled on.
Third and finally I felt like a completely different person.
I wasn't sleeping properly because my mind wouldn't shut off, then when I'd get finally get to sleep I'd wake up middle of the night and have to run to the toilet and then couldn't get back to sleep. I was exhausted. My emotions and hormones were all over the place so I've come to the conclusion that steroids make me a much angrier and impatient person. They made me really irritated all the time and act like not a very nice person, I was so tired but my mind just wouldn't let me relax.
The side effects were most prominent during this course of steroids as I was still so ill all the problems sort of piled on top of one another, it wasn't a positive experience but they stopped me from being in hospital before starting my first treatment.

Back to November 2017 and I had been on Infliximab treatment for 3 months with no response, we found out I'd developed anti-bodies and the drug was not working so steroids were re-introduced. I was given a month supply of Budesonide foam enemas to keep me going until I could start Humira, another long term treatment. Budesonide enemas are my favourite enemas which sounds like a funny thing to say but its true! They are the only enemas I've ever noticed to slightly improve my disease and the only enemas that don't want to come out as soon as it's gone in.
(What a strange thing to air on the internet but we're all accepting here aha!)
I ended up staying on these enemas for around 2 months until January 2018 as before starting Humira, my disease flared up immensely again. I don't really remember experiencing side effects with enemas as they aren't going through your whole system, they're only absorbed in the bowel so aren't as strong.

February 2018 was my month free of steroids and the worst month of the year, my disease wasn't improving, my medication wasn't working and by March 2018 I was back on Budesonide enemas.
I stayed on these until my hospital admission in May 2018.

Beginning of May 2018 and I was admitted for the same things as in July 2017. I was put on Hydrocortisone IV steroids, exactly the same dose as last time and spent another 5 days in hospital.
And so history has almost repeated itself but with a few changes...
Throughout May, June, July and August I will have been on steroids but I'm almost done with my course. Right now I'm on 10mg and should be coming off them completely within the next few weeks. Although I've had the same effects of increased appetite, struggle sleeping and becoming more irritated, I haven't let that take over me like it did last year and I'm so proud of myself.
I've felt fit and healthy for the first time in months meaning I've exercised every day and been eating so healthy to stop me gaining the weight, I've tried to stick to regular sleeping patterns and relax before bed to get to sleep and I've managed to spend more time seeing my friends and doing so many incredible, fun things that I don't have the time to let my mind take over!
The only side effects I can complain about is a tiny bit of moon face, becoming very easily bruised and that my feet and arms tingle an awful lot but these things should all go with time.

The steroids this time have had a much bigger impact on controlling my disease meaning that over the past few months I've almost felt back to normal and that feeling has been incredible. It's allowed me to feel like my old self again and realise that I can have a life beyond this disease and can accomplish anything I want to do.
These months I've been on steroids have been the best months of my life for a long time.


And that is my knowledge and experience with steroids, a very long, complicated but sometimes loving relationship. If you've read it all and are still reading now then THANK YOU VERY MUCH!
 I wanted to make sure everything I wrote was correct so this post has taken quite a while to compose but fingers crossed it's worth it. Steroids are just another part of my life now but for those of you who didn't know anything, I hope it's helped you understand the way they work and that there is a lot more to taking them than you think.

If you want to find any more information then head over to www.crohnsandcolitis.org.uk as they have so much stuff to read but if not, I really hope this post was informative, helpful and interesting.
Thanks for reading!

Lucy Jane













3 comments

  1. This comment has been removed by a blog administrator.

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  2. Lucy this is such an informative post and one that should definitely be shared because it could help so many people. You're so brave and Ulcerative Colitis sounds like a horrible disease that you're battling but coming out stronger and I'm so glad for you that these last months are getting better for you. The information about steroids was also fascinating and so well written! I have a congenital condition which means my body doesn't produce enough cortisol and I have to take the steroid hydrocortisone for the rest of my life, although doctors tell me how important it is to not consistently miss doses, your post definitely reinforces that and the importance that steroids do have (whether it is in the short term for you or the long term for me). You're so brave for sharing your story and I wish you the best :) x

    eleanorclaudie.com

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    1. Thank you so so much! That's so interesting and thank you for sharing your story, everyones got their own battles no matter how big or small and we're all going through at least something! Wishing you all the best, thank you again for such kind words xx

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