I recently got diagnosed with inflammatory bowel disease (IBD) where your small bowel becomes inflamed. Research hasn’t figured out what exactly causes the disease yet but most people think it may be an autoimmune response whereby the body stops recognising the natural bacteria in the gut and attacks it instead. I feel like IBD is a condition people can be slightly uncomfortable speaking about due to the fact that it deals with your bowels and poo. If I’m honest, when I first got my diagnosis I felt uncomfortable talking about it.
So let me walk you through what has happened up until now. In January 2018 I found that when I went to the loo I had bright red blood in my stools. This wasn’t just a one time thing either, it kept happening, and knowing that wasn’t a good sign I decided to make an appointment with my GP. My GP referred me to the hospital, specifically the bowel clinic, for a colonoscopy and I was booked in for March.
Only… I stopped bleeding. As suddenly as it had started it had stopped. I cancelled my clinic appointment not wanting to waste anyone’s time. I mean, why go through a colonoscopy when I didn’t need it anymore, right?
The next couple of months went by with no issue and I forgot all about the GP and clinic. And then once again I started to find blood. This time it was accompanied by stomach pains but as it had occurred during Ramadan when I was fasting for 18 hours a day I put it down to lack of food and having a stomach bug. I stopped fasting and the pain got better but as soon as I started again it got worse. Acid reflux, maybe? I took the rest of Ramadan off thinking it would sort itself out.
I was wrong. By the time Ramadan finished I was in agony and decided that another trip to the GP was needed. I was prescribed tablets to help slow down my bowel movements and told I would need to see a specialist from the gastroenterology team. My appointment came through pretty quick and the consultant (who did and continues to put me at ease about my condition) asked me a few questions before feeling my stomach. She told me she believed it was IBD but the only way to know for sure was to do a scope but rather than a colonoscopy she requested a flexible sigmoidoscopy which only looks at the lower section of your bowel.
The tablets from the GP helped and before long I felt like I was back to normal again. My scope appointment was booked for October and when it rolled around I was told to take a laxative for 2 days before heading into the hospital – unpleasant but necessary. At the hospital a nurse talked me through the procedure and told me on average it lasts about 10 minutes and that most people manage without any pain relief – however if I wanted pain relief I would need to fill out some extra paperwork. I decided against it considering that I have a relatively high pain threshold and they took me through into the scope room.
I had 2 nurses and a doctor who did the procedure and all were lovely. The scope was much smaller than I imagined and although there was some discomfort at the start the rest of the time I could barely feel it. The look of my lower bowel clearly showed it was very inflamed and because of that the doctor wanted to take a look at the rest effectively turning the procedure into a colonoscopy. I didn’t want to have to go through all the prep again and so I gave my consent. What I will say is that at this point I really wish I had signed up for the pain relief. Your bowels bend and they have to get the camera around those bends and you can definitely feel it…
They took biopsy samples from all along my bowel so that they could test whether my IBD fell into the crohn’s or colitis category. I was told that it could take up to 2 months before my results came back and at the time I thought nothing of it. That’s when my flare up decided to get worse. I was laid up in bed in pain, constantly running to the loo and losing a lot of blood. After about 2 weeks of suffering I decided to go to the GP, aided by my parents as I couldn’t walk on my own, to be prescribed steroids, a blood test to check if I was anaemic and for them to write a letter to my consultant asking for my biopsy results to be rushed through.
When I went to see my consultant again, she confirmed that I had ulcerative colitis in the last third of my bowel – I was grateful to hear that it hadn’t affected my entire bowel. I was referred to the IBD nurse to be put onto azathioprine – an immunosuppressant drug – and told that it would take approximately 3 months to help calm the inflammation. Great! I was finally on medication and had a time frame in mind in which I would start getting better. The thing about azathioprine is that they have to monitor your liver and kidney function whilst you first have it so I was told to go for a blood test every week for the first month before being reviewed by my nurse.
I got home and started taking the medication but didn’t feel any better. If anything I was still running to the bathroom and felt queasy. I had been struggling to keep food down for a few weeks and that hadn’t improved but I kept thinking ‘It’s only been a few days – they said it would take 3 months’ and so I just kept ploughing on. I didn’t even bat an eyelid that something may be wrong when I fainted after having a shower and instead just put it down to being weak from lack of food and all the heat and humidity.
After a week I dragged myself back to hospital for the first of my blood tests, came back home and promptly laid on the sofa all day catching up on I’m A Celeb and other bits of TV whilst feeling completely rubbish. By the time my Mam came home from work she was telling me we had to head back to the hospital as my bloods had shown I was anaemic. I had a small panic but she told me it was nothing and my Dad drove us back down to the hospital while I was thinking about what other medication they would stick me on.
Oh, how little I knew. When I got to the hospital I was assessed by a doctor who told me my blood count had gone from the 100s down to the 30s meaning that it was low enough for me to need a blood transfusion. I burst into tears as she told me I’d need to have a cannula inserted and to have 3 units of blood overnight. I had had no idea but I had been losing a lot more blood than I thought and it had lead to me feeling so unwell. They inserted my cannula and I was told to wait 30 minutes whilst they sorted out a bed on the ward. Within those 30 minutes I had managed to faint, throw up all over the waiting room, and faint again. As you can see, I really was a mess by this point.
Finally onto the ward, they started to give me my transfusion. The one question people keep asking me is if I could feel anything but honestly I couldn’t feel a single thing. Overnight, the doctors prescribed me fluids as well meaning that my stay in hospital was extended. What we expected to be a simple overnight stay turned into 2 weeks.
Overall, the doctors weren’t happy with my condition and wanted to try and sort out my pain and bleeding before sending me home. They stopped the azathioprine and swapped my oral steroids for IV steroids instead. My hands and feet and face swelled up with fluid and I couldn’t recognise myself but the pain had stopped. I had regular blood tests taken to make sure my blood count wasn’t dropping again, an iron infusion to help keep my levels where they needed to be and abdominal x-rays to ensure the inflammation hadn’t spread. In total, I had 3 cannulas put in with the last one taking 9 attempts – something that still makes me feel a little shuddery.
Eventually, following all the testing I was finally put onto a new drug, classed as a biologic, called Infliximab. This is a quicker acting drug that helps reduce inflammation with some people feeling results as quick as the next day and most people feeling the effects in 2-6 weeks. It’s taken as an infusion and during my first treatment they kept a close eye on me to make sure I didn’t have any reaction to it. Thankfully, everything went smoothly and by the next day I was running to the bathroom less frequently and feeling less tired. I spent the next few days in hospital just so they could monitor me before being released.
So now I’m back at home and back on oral steroid, tapering off them slowly. My next Infliximab infusion is on Christmas eve and the next will be a month after that. If all goes well I’ll then have the medication every 8 weeks. It’s not the easiest way to go about things but if it means that I’m not in pain and that I can live a relatively normal life then I’m happy to go about doing things this way.
It’s been a long journey and right now I’m still not 100% but I’m looking forward to getting back onto my feet properly. I can’t thank enough the nurses and doctors who looked after me in hospital – the NHS is an absolute God send. I’m also really grateful for my Mam, Dad and Saira who looked after me through all of this.
Hindsight is fantastic and I have learned that I will never put anything before my health again. I will definitely be listening to my body from now on.