Steroids!!

OMG. That first week on steroids, if you could have seen me.. I was the happiest, most pain free, I had been in months, maybe years. What an incredible feeling!! People warn of the side effects of taking steroids such as weight gain, acne, and more… but knowing how I felt at that moment, I couldn’t care less. One side effect did hit me quite hard! That was insomnia. The steroids gave me a racing heart which made me feel very awake all the time. Even at 3 in the morning when I had to be up early for university the next day… However, you know what? I was still pain free and happy. I started to write songs at those times when I was by myself in the middle of the night, stories telling my pain and struggles, and of my recovery. Perhaps one day I will be brave enough to share them!

One of the most incredible things about being, very suddenly, pain free after years of chronic pain was thinking how in the world I was dealing with it before. After starting the steroids I returned to university and work (nannying) basically a new person. I was able to actually concentrate in class, not wanting to drift off to sleep, I was inspired to do my assignments when I returned home, and I didn’t feel like I needed a nap in-between uni and work each day, as I had been doing before. Oh and my job! My job was to look after kids after school. I’m sure you can imagine how much easier and more fun it became for both me and the kids I looked after once I was feeling so much better. So, yeah, steroids are great for sure but not something I ever want to have to rely on-as I know now many Crohn’s disease sufferers do.

What is going on??

After my diagnosis the specialist was able to tell me what was going on in my digestive system and what was causing all of the pain. Part of my Ileum had become so inflamed that the pathway for food to move through was tiny. So-and this is one of the most amazing parts-my body had created another pathway for food to bypass this area and go straight into my large intestine. How incredible is that?? I think it is an amazing thing that your body, on quite a few levels, knows what to do to keep you alive! However, even though this had happened, I was still in chronic pain. The specialist prescribed me steroids for the inflammation and let me know that I needed to have surgery to remove the inflamed area and the extra pathway..

Colonoscopy!

From then on I realised gosh, the bowels are a weird topic. So vital to your body but so awkward to talk about. Yes.. I am going in for an.. Appointment.. Where I will be sedated.. No big deal though..

The prep. OH GOD THE PREP. Just picture having to drink a couple of litres (within a few hours) of this orange liquid that tastes slightly like orange metal that has been sitting out for too long THAT MAKES YOU POO! Oh and how it makes you poo. Here comes the first lot of too much information! It felt endless and exhausting while at the same time not exhausting at all because it was just streaming out. Then I would think; “well, I’m gonna leave the bathroom and drink MORE PREP” but I would be returning to the bathroom five minutes later. This process took around 6 hours. THE PACKAGE SAID 4! So by midnight I was crawling into my bed thinking, “Please.. Please no accidents tonight..” Someone was listening because thank-goodness I woke up 8 hours later accident free!

So Mum dropped me off and we’re acting like it was just another day but I was just thinking about what this procedure would be like because honestly, all I knew was that there was about to be a camera shoved up my bum, poking around and taking samples. *Shiver*.

I got into the ‘procedure room’ (if that’s what you call it?) and lay down on the bed. The nurse inserted an intravenous line into my arm, in which another nurse inserted the sedation and WOW it HURT. However, being the type of patient I am, I assumed this was normal. WRONG! The doctor asked if I was feeling the effect of the sedation yet, to which I replied “No..”. She looked at my arm and muttered “Oh that nurse has been mucking up all day, she didn’t put the intravenous line in deep enough so the sedation didn’t go in to your veins”. UM. I looked down and all I could see was this bump of raised skin where the injection of sedation was sitting. If I wasn’t nervous before that, I sure was now! But she quickly puts the sedation into my other arm and I drifted into lala land.

A funny place, lala land, because I remember the doctor talking for some parts and me feeling weird for other parts. The procedure seemed to last for all of five minutes before I woke up in the recovery room to the same nurse that mucked up before talking to me like I could understand what she was saying.

That was my colonoscopy. The results? A diagnosis of Crohn’s disease. Whoopdie fuckin doo.

“I think I’ll refer you to the specialist now..”

..Says my GP as she pokes around my stomach and causes me tear-provoking pain.

This seemed to be the longest part. The wait for an appointment. I mean, it was only two weeks because I had great health insurance that would pay for a fancy one but still.. Now I was worried something bigger was wrong with me.

This is when I did that thing that we all do but shouldn’t do. Googled. Why shouldn’t you do it? Because I feel, no matter what your symptoms are, you will find a result that will end in cancer or death, or both… What if I had stomach cancer? Or bowel cancer? Or IBS? Or IBD? What if there is no cure and I will die??

Time for the specialist appointment.

I find it amazing the differences and similarities between a GP and a specialist. The GP, who is a general practitioner sat down with me and she was assuming all the things that patients usually come in for, such as stomach bugs. I sat down with the specialist trained specifically in gastroenterology and she assumed all the things patients usually come in for. Such as Crohn’s disease. Just to be sure, a colonoscopy was ordered.

Hospital Visit #1

Auckland hospital, a world of not enough doctors, too many nurses who don’t speak english, and disgusting food which is sure to make you sick by itself.

I was admitted to the emergency room at the beginning of September, however by this time the pain had subsided quite a bit so I wasn’t able to show the doctor how much pain I was in previously, but they took blood samples and did a physical exam.

My Mum had gone home for a while when the doctor came back in and said “your bloods seem clear and you’re not in too much pain so we’ve decided we can send you home”. Well that did it for me, I burst into tears. (Much to the doctor’s shock!) “What’s the matter?”

“Something *sob* is wrong *sob* with me, and I just *sob* I just know it.”

Two days pass in hospital before the symptoms get really bad, and I’m talking diarrhea, pain however I lay or sat or stood, and pooing blood (probably the scariest part). Oh, now they’re going to take me seriously. I am admitted to a ward with a bunch of old woman with heart problems (because the rest of the hospital is full) while I wait for my poo test results to come back.

Flash forward a day and a half and I am being wheeled out of the old woman ward because I am ‘extremely’ contagious with a case of clostridium difficile.

“The average human digestive tract is home to as many as 1,000 species of microorganisms. Most of them are harmless — or even helpful — under normal circumstances. But when something upsets the balance of these organisms in your gut, otherwise harmless bacteria can grow out of control and make you sick. One of the worst offenders is a bacterium called Clostridium difficile(C. difficile, or C. diff). As the bacteria overgrow they release toxins that attack the lining of the intestines, causing a condition called Clostridium difficile.”

At this point I am confused and upset. After the diagnosis, I had done hours (well, ten minutes) of research about the infection. It was caused because I was prescribed antibiotics when they weren’t necessary. Now I know that is a whole different debate but I just thought: how is it even possible that I have come full circle??

The next day I have a CT scan which confirms that my bowels are inflamed at various points and I need to start antibiotics straight away. Which antibiotic? Well, trusty Metronidazole of course!

Anyway, after a couple of nights in severe pain and me yelling at the nurses to give me more pain killers when they couldn’t, I was free to go. But something inside me said no, this isn’t the reason for your symptoms, there is something bigger going on here. So, being the person that I am I addressed the doctor and told him so. His reply? “We can see c.diff so we are treating c.diff, if your symptoms persist after you have finished your antibiotics in two weeks, feel free to come back in.”

Two weeks and a course of antibiotics later, the original symptoms were still there, so where do I go? Back to the doctor of course!

 

Antibiotics

August 2015; the month of antibiotics.

“Oh yes, it’s definitely a stomach bug. Start taking these straight away.”

As any good patient did, I started taking the antibiotic: Metronidazole. A commonly prescribed antibiotic to eliminate bad bacteria from the body. Morning, afternoon, and night. Two weeks later, no improvement. In fact, I felt as though my symptoms had gotten worse!

“Hmm, strange, well here’s a different type of antibiotic, maybe that’ll help.”

So being the person I was at the time, I had complete faith in my doctor. I started taking the new antibiotic: Augmentin. Not even two days later, my stomach pain had reach a point where I would start crying if any pressure was applied to my stomach. Back to the doctor I went.

She applied pressure to my abdomen and tears started streaming down my face.

“Hmm.. I think you may need to go to hospital.”

The Beginning

So, July 2015.

I find that it is always hard to differentiate between circumstantial pain and abnormal pain. Let me explain: July 2015 I was on a giant cruise boat in the middle of Asia with many members of my family for a mass celebration of my Mum’s 50th birthday. So when I started to get my initial symptoms of Crohn’s disease it could have been one of many things related to my environment.

1. I was in Asia, how many stomach bugs can you get in Asia?
2. I was on a boat, I get travel sick very easily.
3. I was jetlagged, people are known to feel fatigued due to this.
4. I was eating different foods than normal, this could easily cause stomach pain.

However, the time came when I returned home to New Zealand and the symptoms kept persisting. So what did I do? I went to the doctor! What did she assume? Well, I was in Asia, so obviously it was a stomach bug.

Then we enter the stage of the ever controversial antibiotics.

Getting Started

Hi.

So, I probably should have started this at the beginning of my IBD journey in July 2015, but how was I to know it would turn into a journey? All it was was a constant pain in my abdomen, unidentifiable by doctors and undiagnosed for five months!

On this blog I am going to start at the beginning, it is mostly for me but if anyone happens to stumble across it then so be it; I hope you learn something or understand what Crohn’s disease is like in some people!