How the story started

This journey began nearly 7 years ago when big girl was just a baby and big fella was the size of a peanut. 

I was a few weeks pregnant and had noticed some bleeding when going to the toilet. One day I went and there was so much blood that I thought I must be having a miscarriage- but soon realised it was coming from the wrong hole. 

At just 24 I didn't really fancy going to the Doctors and having them poke around down there (lets face it, we all get embarrassed about down below stuff) but I was worried that I was soon going to have 2 babies that would be needing me and that I couldn't put it off incase it was something serious. 

The GP referred me to a gastroenterologist at Chase Farm Hospital in Enfield where I got an appointment pretty quickly. 

I remember going and the consultant, Dr 22, saying that he wasn't sure what it was but being pregnant he couldn't do all the tests so I would have to go back again once the baby had been born. 

Not having cancer completely ruled out did freak me out but I had a very difficult pregnancy in other ways so didn't have too much time to dwell on it. 

When big fella was just 4 weeks old I went to have an endoscopy which is where they insert a long tube with a camera up your back passage and film what they see as it passes through. 

They sedated me for this and that coupled with exhaustion from a new baby meant that I slept throughout the procedure (not something that's happened on subsequent procedures!)

Coming round in recovery I remember Dr 22 coming to see me to tell me that I had ulcerative colitis (UC) and handing me a piece of paper with some pictures of the insides of my bowel on it. I still have that piece of paper. 

The best way to describe UC is like having lots of ulcers along some or all of your large bowel which bleed, weep, ooze mucus and are sore when things pass over them, a bit like a mouth ulcer. 

Initially I was put on some medication to try and control the symptoms which for me included an increased frequency in passing stool, it was very watery, bloody and painful. God, the cramps were terrible, I used to be doubled up in pain some days. 

It became clear that it wasn't getting any better so I was put onto oral steroids and suppositories. These helped a bit but I hated the side effects so discussed with Dr 22 about trying herbal medication. 

I remember that appointment as if it was yesterday. He just smiled and said that "all his patients go through a natural medicine stage", that he was happy for me to try it but that he would see me in 3 months when he expected I would want to go back onto traditional medications again. 

I never did make it back to that 3 month appointment as very quickly my symptoms worsened to the point that I was going to the toilet up to 50 times a day and struggled to do even basic things like go to Tesco incase I wouldn't make it to the loo in time and would mess myself.  

I don't know if it was just coincidental with the fact that I was 'going herbal' or whether it would have happened even if I had stuck with my medication but part of me has always wondered if this triggered the events that followed. I wonder if the Dr had insisted that I remain on my medication or if I hadn't read this stupid book about UC and healing yourself through diet and herbal remedies whether my life would have turned out differently. 

What if. What if. What if. 

At this time I was so embarrassed about what was happening that I didn't really tell anyone, not even my hubby, but people could see that I was starting to look quite poorly and I was losing a lot of weight as everything passed through quickly and it was so painful when I did eat that I wasn't eating very much. 

The crunch came when I went to visit a friend in Welwyn Garden City and when I pulled up at hers I literally collapsed as I walked in the door. 

She decided enough was enough and drove me straight to the QE2 A&E where I was admitted straight away into the gastro ward. 

They pumped me full of IV steroids and when they didn't work they put me on Ciclosporin (which I was told is a chemo drug that suppresses the immune system as UC is related to the immune system). 

I remember the Dr coming one day and giving me a foam steroid pump and me telling him there was no way I would be 'putting that up there'! Little did I know I would be putting foams and tablets 'up there' for years to come. 

Unfortunately for me, none of these drug treatments worked and one night I went to the bathroom and collapsed. I remember the nurses calling the on call Dr who told me that my bowel had perforated. I was quite poorly at this stage and just remember that there was a hive of activity and within hours I was in theatre having my large bowel removed. 

So that's how the story started. There's a lot more that followed in the weeks and months after but I will save that for another post. 

NB x