This has weirdly been one of the biggest things that I have had to accept. I will take you on a brief history of me to understand my viewpoint on medication. Again, not a doctor, but this one feels personal.
As a sportsperson (and an injury prone one at that) I was well versed in pain medication when in 2015 I broke my leg playing rugby. What should have been a simple break turned into a bit of an ordeal (story of my life apparently) and it was not simple. At the start of the leg break I was supposed to be taking painkillers (for the pain obviously) and a blood thinning injection every night (because of the cast that I was having to wear). Being the stubborn human that I am I decided that I didnt want to take the painkillers and I swear it was only mum slipping them into my food sometimes that made me take them. I took the blood thinners (because I didnt fancy a blood clot) but generally tried to soldier on and not take anything. We move on to cast removal and it’s all gone wrong, surgery wound has opened up and I am in for a long (turned out to be 7 months) recovery period to try and get my leg back. In this time I was again prescribed painkillers (nope), blood thinners (yep) but also antibiotics because the wound became nastily infected. Helpfully I was put on antibiotics I was allergic to, and spent 24 hours throwing up. This then ruined the base of my Oesophagus and I had to have more medication for acid reflux problems, plus antibiotics I wasn’t allergic to. After a second surgery to remove the pins and plates I took the solemn decision that unless I was dying, I was not taking medication. Unless I was specifically told by a medical professional that they were necessary, then they weren’t coming in.
I stuck to this pretty strictly, headaches can be dealt with by drinking enough and sleeping, period pains cleared up with perseverance and a hot water bottle and most other things you can grin and bear while they heal (rugby injuries).
So when I came into hospital and I was put onto IV steroids it was all a little shocking. Then it dawned on me, for the rest of my life now, I am going to be on some form of medication to keep this under control. When I left the hospital for the first time I was taking, 8 steroid tablets, lansoprazole and Ad-Cal. I think that’s it. For all of that I then had to remember when i was taking it and how much. The steroids were on a reducing dose, the Ad-Cal taken twice a day, my head was spinning with what needed to happen. While I was trying to get used to it all, I took to the App store to see if there was anything that could help me out. On here I found a great app called DoseCast (I promise I am not working for them). You can put all of your medication in there, including the amount of tablets per dose, when you take it, how it is meant to be taken, the dosage numbers, everything and then it sets reminders for you to take them! I know this is probably not news to a lot of people but this was a revelation for me. One thing that was particularly helpful with this app was that I could put in medication that wasn’t taken on a schedule for example paracetamol. This was great because when i was taking them in the middle of the night I could click “take dose” and then it would let me know if I had taken over the allowed amount. I found this really handy so i didn’t take too many, especially when I was taking them at weird times in the morning and trying to space the doses out every 4 hours, not always easy to work out when sleep deprived.
I was then admitted to the hospital again and I will write about the in-hospital medication in that post but as I was discharged I was left on even more medication. I came home from the hospital taking Ciclosporin (which honestly look like horse pills and smell disgusting), that’s three pills of that, 8 Prednisolone steroid tablets (40mg), Lansoprazole and Ad-Cal. It was a lot of tablets.
I am on a reducing dose of steroids, so this goes down by 5mg a week until eventually I wont be taking any. I am also eventually going to be taken off Ciclosporin but I am going to put on another medication called Azathioprine. As steroids, Ciclosporin and Azathioprine all supress your immune system, they have to have the steroids reduced to a 20mg dose before you can start the Azathioprine… and somewhere in all of that, I have to come off the Ciclosporin as well. I have to be honest and say I am not entirely sure how that is going to happen, we shall have to wait and see!
Anyway, I guess the moral of this story is that you adapt and learn. I have had to accept that I am going to be taking medication for while, probably for life and I need to get used to this.
It might seem very trivial for others but I thought I would put out there that it is OK to be bamboozled by all the changes that you are going to have to make in life and for me medication is a big one! Take the changes as they come and make sure you understand what is going on in terms of schedules and anything else. Take your time to understand it and it will become routine and habit.
I will include pictures of all the tablets that I am on! Blimey I feel like I am rattling like a pill pot!
What a lot you’ve had to deal with Ellie. Fingers crossed for the next stage in all of this.
Let’s hope my body decides to like Azathioprine! It has not been well known for cooperating…
The only IBD related medication I am on permanently is Omeprazole (which reduces the amount of acid produced), only with flair ups do I have to take steroids and/or antibiotics. Telling you this to reassure you that it does get better.
That is very interesting, I have been told that I am going to be on Azathioprine which is an immunosuppressant but I am going to aim to try and manage it as well as I can with diet and exercise as I have been told a lot that these can help immensely! I am currently on Lansoprazole for the side-effects of the steroids but hoping that steroids will be over soon (Y) x