There’s one thing I didn’t count on when I got landed with UC and that’s all the drugs. Drug maintenance therapy is a marathon all about trial and error in the hope that you find something that works and keeps you in remission for as long as possible. It’s all different to every individual; it may be that one person’s UC is stubborn and they have to take lots of medication to get it and keep it under control, but that might not be the case for someone else.
My UC seems to be very stubborn, and I now have a whole shelf in my bathroom dedicated to all my different drugs. The medication varies from intravenous therapy to suppositories, to pills and injections. For the last seven months I’ve been on a high dose of Prednisolone steroids, had a blood transfusion, IV iron infusions and IV steroids. I’ve had Asacol, two types of enemas, Mesalazine, Azathioprine, IV Infliximab every eight weeks since February. Methotrexate, Allopurinol, vitamin D tablets, calcium tablets and folic acid…the list goes on and on and the names don’t get any easier to pronounce. Sometimes you have to take drugs to suppress the side effects of other drugs, extra vitamins because the meds are so strong that the body can’t do it naturally anymore. Some are immunosuppressants, meaning no more sunbathing and a cold can mean two weeks in bed or even hospital.
Oh and they all come with their own nice little side effects! Prednisolone is the worst for side effects! Immediately it gave me the worst acne I’ve ever had and my hair started to fall out! They also made my face really round and there is no amount of makeup that will help this…believe me I’ve tried. I now look like what can only be described as a spotty tomato or living Snapchat filter. I get stiff joints, headaches and bloating that makes me look 4 months pregnant. I’ve had insomnia and restless nights, craving some very strange foods in the middle of the night. I suffer from some serious mood swings; having almighty highs and lows. It all seems very ironic considering the meds are supposed to be making you better and sometimes it certainly doesn’t feel like it.
For me, some of the meds have worked immediately. I’m on IV therapy for the next year or so and that really makes a noticeable difference. Even if it does mean I have to go into hospital every eight weeks and sit there for a few hours it’s totally worth it. The steroids (even though they give me some nasty side effects) are a great drug. Prednisolone is what got me to a state where I could actually stand up for more than five minutes without feeling like I was about to pass out. However, some of the drugs take months to start working and some of them haven’t worked at all. I had, what can only be described as resembling the worst batch of food poisoning I’ve ever experienced from the Azathioprine; violently throwing up immediately after I’d taken it, it made me feel awful and threw me into a relapse.
No one wants to take a load of drugs for the rest of their lives but I haven’t really got a choice; if I didn’t take the cocktail of pills I would probably be in real trouble. Thanks to the long list of medication I’ve been on for the last seven months I’ve been able to be a functioning member of society; I can walk around, I can stay awake all day without needing a nap and go about a pretty normal-ish day. It just starts with my breakfast consisting of 20 different tablets. However, it does become normal to take 15 to 20 different size pills every day or undergo IV therapy every eight weeks; you just factor it into your life. Not letting it get in the way, just allowing it to become normal.
Drug therapy is something that I need to work. So far my UC has been very angry and as my consultant likes to keep reminding me, surgery is my only option if it doesn’t work. How close that is, depends on the medication. I’m now waiting to finish the course of steroids and hoping that when I do come off them, I don’t go straight back into a flare up. Sometimes it can feel like an endless battle; fighting the UC as well as having to deal with the monstrous side effects of what is supposed to be making you better.
Even though some of the meds haven’t worked for me, when it does work it’s the best feeling in the world. To find something that means you’re getting ever closer to remission and ever closer to that normal life again; that surgery is pushed further into the distance. It can feel like a million steps back and one step forward, an endless trek, but you have to keep pushing. The side effects have really got to me at times; when the face staring back in the mirror doesn’t look like my own anymore. When there is more hair in my lap than on my head. When it doesn’t feel like it’s getting any better, and all I want is for all the pain to be over; to go back to normal. I try to stay positive, to tell myself every day that this is going to get better. The side effects will ease as I start to come off the steroids and I have to hope that the millions of other pills I’ll be on for life don’t cause any grief. I have to hope that I don’t go back into a flare and pray that surgery isn’t on the cards for a few more years. I have to try every drug under the sun to get this stubborn UC under control; to give me the best chance at a normal life again.
2 thoughts on “All the Drugs.”
Hi Billie,hope all is well in you world right now.
Just finished reading your last installment and had to let you know as in previous ones you always seem to touch on something that has had me thinking ‘God am i normal’. I woke up today at 6.30 am thinking about scrambled eggs with cheese grated in it,so thank you for putting my mind at ease now I know perhaps I maybe nornal after all.
I love the way you write,everything is so matter of fact,you seem to be so at ease with this horrible disease we have to live with.
Looking forward to next piece
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Hi Margret! Thank you so much for your kind words. I’m glad that my little blog can help at least one person. It means so much to me that you are following it & my story. But do you know, we are far from normal & that is the best thing in the world. We have something that makes us all so strong & that is far from normal. You should be proud to be different!