My Journey so far

As I said in my first blog I was diagnosed in September, many of you who haven’t been through the process of diagnosis won’t know that even after being diagnosed there isn’t necessarily a solution to treat Crohn’s. When I was first referred by my doctor it took a good month to get an appointment for my first examination from a specialised nurse. The nurse was lovely, and if she hasdn’t have requested a stool sample I still wouldn’t have been diagnosed. From your stool they can tell the difference between IBS and an IBD, this is by testing whether your stool shows inflammation from your bowel. In my case it did. 

Although my stool showed inflammation this was not yet a diagnosis, I was requested to go for an endoscopy. A procedure where a camera goes through your digestive tract from your bottom. Before I could have the procedure I had to fast 12 hours before, but I also had to take two soluble laxatives, which did not taste nice at all. Due to the horrible taste I only managed to get one down as I threw the other one up, luckily this was okay. After this I went along to Salisbury hospital to have this procedure, where the staff were all lovely. One bit of advice, I found out that instead of having to drink the laxative they could have provided me with a tablet, personally I would suggest asking for this! The endoscopy itself for me was very painful, but when I had spoken to others they said it wasn’t too bad, due to the amount of inflammation I had it caused it to be more uncomfortable. By the end of the procedure I was starving, make sure you pack yourself a sandwich in your bag and some of your favourite snacks and water. On the piece of paper I was given after the procedure, it stated that I had Crohn’s, not that any of it was explained. 

But from this examination I was put onto a corticosteroid, which for me was not good. Being on steroids long term is not good, but for me I was only on them for 2 months with a decreasing dose from 8 tablets (40mg) a day. I encountered severe shaking, panic attacks, effect on my mood, acid reflux had got worst and weight gain to the extent I had hamster cheeks. I had called my IBD nurse about the symptoms, which he then put me on an anti-acid tablet and that these were normal symptoms. Another bit of advice, only after talking to someone else who had had them did I know you could have sugar coated ones to get rid of the taste, ask for them as they did not taste nice at all. These steroids were meant to take down the inflammation and help me into remission, but it’s had the reverse effect, I looked pregnant for the time I was on them and it intensified the pain of Crohn’s, at night I had to sleep on my back. I could talk for ages about how awful I believe these steroids are but they may help some people they just didn’t help me. 

When I finally got a specialist appointment I was given leaflets on my next set of tablets and the biological treatment and sent on my way. I had been prescribed that many tablets I had 10 to take every morning, I did this for about a week until the side effects started to kick in. It was just headaches first and peeing a lot, then the saliva and acid along with nausea came, with all of these combined I struggled to get out of bed and not break down. Currently I’m waiting to get in contact with my IBD nurse to see the alternatives because yes these tablets may have helped but I still need a quality of life where I can work to pay my bills. 

So far this is my journey, it’s at the beginning, but there is so much I have learnt from just these small steps, knowing that not all tablets are suitable especially when they don’t cure me, just make the disease go into remission, where it can flare up at any time. So for now I’m in a flare up learning to cope and still live my life. Through all of this I had graduated and moved to Cardiff, got a new job.

I haven’t even touched on how much I struggled with food all the way through this, my next blog I will go into detail on what effected me, what I can eat and just food in general.

I hope you found this helpful, please ask if you need more advice or help, I will do my best to do so! 

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