From nought to twenty tablets
Through a colonoscopy I had just found out the illness which had been taking over my life was severe indeterminate colitis. I had been med free for many months up until this point, not wanting to risk worsening symptoms. I had been given Asacol (6 x 800mg) and Prednisolone (40mg) to take per day. A nurse informed me about my tablets and said that I’ll be able to feel a difference within 3 days. That was the only thing I processed and I hung onto to that statement, like it was a fact. Now the medication was in my hands, I had no idea of the strength or side effects, and quite frankly I didn’t care to know, all I wanted was for these months of suffering to be over.
I knew I was meant to wake up early to take the Prednisolone but my sleeping pattern was still all over the place. Usually I’d wake at noon, because my sleep was so broken in the night, going to the bathroom every hour. Then when I did wake up, getting up to start my day required energy I just didn’t have, the exhaustion experienced in those days was unreal. But it was time to start the medicine, I popped out 8 tiny pills of Prednisolone and tried my best to eat a banana and down some Fortisip. I had to force myself to eat; these pills couldn’t be taken on an empty stomach. With a glass of water I placed the Pred in my mouth, and tried to wash it down, I wasn’t prepared for the overpowering bitterness. I was drinking away but those little suckers stick to your mouth, at least the Asacol was easy to consume.
I had every intention of waking up early, I’d set my alarm, but found myself automatically hitting snooze over and over again. I knew my energy was low and blood tests had just confirmed this, I was deficient in Vitamin D. This wasn’t too much of a surprise as I’d been housebound for months, but results showed I had virtually none in my body. 20,000 IU strength D3 tablets were now added to the mix of my medication, to be taken 3 times a week.
Day three had arrived and I wasn’t any better, for some reason I believed that I would just go back to normal in that time frame. I was so disappointed in myself that I was still using the bathroom 15 – 20 times a day and losing blood. I felt like a failure that I didn’t live up to the nurse’s benchmark; clearly I had set the bar unrealistically high, and didn’t understand what she meant by stating I’d experience a difference. Looking back I realise I was way too hard on myself because a few short days later I noticed that I was able to stand up and walk around. The bleeding had cut down significantly and I decided to give up the D3 tablets, the strength was just too high for me and created bleeds, so I switched to a daily low dose D3 calcium supplement, Adcal. Slowly but surely I was getting better, my mind was active once again, I had the desire to want to look at the computer for the first time in months. I actually got really carried away and went a bit nuts with online shopping, I ended up buying so many clothes which in reality I didn’t need nor did they suit me.
Two weeks post diagnosis I was becoming used to this cocktail of medicine, I now knew the Pred should be taken with a sweet drink for my benefit, and that the Asacol produced a dye (you know what I mean!). My timings of taking the medicines were still off and it was time for my post colonoscopy follow up. Still feeling weak, I was weighed and went into my appointment. I was feeling nervous, I didn’t know if my progress was factually good enough. My GI smiled at me and said “you’ve gained 3lbs” his reaction it was all the encouragement I needed. I was showing signs that I was turning a corner, and I was down to using the bathroom 8 – 10 times per day. It was this meeting where I learned how bad things had been. The specialist went on to tell me that he had pushed my colonoscopy forward as my previous calprotectin levels exceeded 1100, timing was pivotal to avoid an outcome like surgery. I felt so blessed that I responded well to the steroids, and my levels were steadily reducing in a short space of time. I was assigned a dietician and ordered to do some more blood tests and was given the green light to start tapering off the steroids in a further week, by 5 mg per week.
Life was certainly improving, but I did experience side effects of the steroids. The steroids would leave me awake all through the night, then I’d become very agitated throughout the day, the smallest things got on my nerves. Nearly every day my head was pounding, other times I could be happy and then I’d just snap. Saying that I don’t think my time on Pred was as bad as others have documented, nothing too dramatic happened, although I had developed a shaky hands and arms.
I received a letter from my specialist telling me I was deficient in vitamin B12, and that should go to my GP to collect the prescription for supplements. It was the lack of B12 in my body which was causing the trembles. This was the first time I’d ever met my GP, I hadn’t been to the doctor’s surgery for years, and my old doctor had left. I sat down in his office hoping to exit as soon as I had my prescription. However, he walked up to the medicine cabinet and said “oh yes, I have one” I was a bit confused, and then he pulled out an injection! As if my trembling wasn’t bad enough this just added to it. He honestly looked so happy with that injection in his hand, like he was waiting for a patient he could use it on!! He filled it with thick red liquid and came over to me and told me to remove my jacket. At this time I thought I’d give it a last attempt to plead with him to just give me supplements, my pleading fell on deaf ears and I was told they wouldn’t work and my levels were too low and I had absorption issues. With my eyes closed the needle went into my shoulder, it took about 10 seconds, and the burn was awful. I was told that I’d need to come back every other day for the next two weeks and that they would go in my hip from now on as my arms were too thin making them difficult to administer. Having them in the hip was a faster, and less painful. It wasn’t a great start to meeting my GP, but things have since improved, especially when he isn’t holding an injection!
Three months had now passed and I was back at the hospital for a follow up with the GI. I’d come on leaps and bounds, I was down to 2 BM’s a day, my colitis for the most part was very well managed. Gone were the days of urgency, and blood, I had gained a stone in weight, I was off the steroids and could feel the impact heavily on my bones. My specialist was overjoyed with my progress; my calprotectin level had reduced to 16, an unbelievable reduction of 98%. On paper my progress was outstanding, and again I felt incredibly lifted after that meeting, I didn’t even take too much notice when I was told my iron levels were low at 9. I just went away and enjoyed the festive season with my family, it felt good to be able to celebrate progress.
Shortly into the New Year I received a phone call from the hospital informing me that my iron levels had reduced further and I would require an infusion. I didn’t really want to have it because I knew I had given up my iron tablets months ago to save myself from pain during the flare, not because they didn’t absorb. I felt a bit caught out on the last hospital appointment when they wanted to do more bloods, I should have been prepared and was kicking myself for not restarting my iron tablets as soon as I regained strength. Now I didn’t have that option because my records only highlighted the decline of my iron scores. I wasn’t too good with needles, despite having so many, but the insertion wasn’t too bad. The doctor kept me very distracted by chatting away, but when I looked over I got a bit freaked out as there was blood down my arm and over the pillow. I wasn’t expecting that as it had never happened with other cannula insertions. These things happen though. The drip itself was very quick, it only took 20 minutes and I was ready to leave. Almost immediately my colour returned.
For some reason within days of having the infusion it knocked my body off balance, the urgency was back, thankfully the blood wasn’t, but I was back to using the bathroom 8 times a day. I was definitely disappointed; I personally believe that infusion didn’t agree with me. From then on I knew I didn’t want an infusion again and started taking a gentle liquid iron supplement, and my scores have been fine since. My confidence was knocked once again, but I put up with it because it wasn’t as bad as the previous flare up. But 6 weeks later things were not getting better, nor no worse. I feel things didn’t spin out of control as much as my vitamin D levels were almost back to normal and I had introduced probiotics to the mix. I take my vitamin supplements very seriously now, I find they do help me.
It was time for another review with the specialist; the month was now March. The tone for those meetings is always set by my blood and stool sample scores. There was clear evidence that the inflammation was on the rise again and I was given the option to start Azathioprine. I was also advised to go back on Prednisolone, I was reluctant to both options. But I knew deep down the Asacol alone wasn’t enough for me. The meeting was an information overload, and I asked as many questions as I could, sometimes I think I probably ask a little too much! I don’t want to be that difficult patient and would hate to think I come off that way, but I just like to know all my options, and I am grateful to be under the care of a specialist who allows me to voice my opinions and not think I’m too zany (hopefully). I was given the option to wait 2 weeks then decide if I wanted to start another steroid course.
I took my time weighing out the pro’s and con’s knowing I couldn’t take another course of steroids for a year if I chose to start this time. There were worries that if things got worse, what would I use to control it. At the end of the day I would have to cross that bridge if or when the time came. For now I knew I wasn’t getting better, and needing the bathroom 8 times a day wasn’t acceptable either. I made the choice to go back on the Prednisolone and kept a positive mind set. I’m currently just a week into my second (10 week) course and progress is slow, but it’s still progress. I feel I can do so much more while on them and my side effects have been very limited so far.
