After sharing my two previous posts on my Crohns Disease journey I was asked if I could write one sharing how I got diagnosed and what my systems were. Just to prewarn you this post is going to involve poo chats. If that isn’t for you then I suggest you read one of my other posts!
My patents said when I was a baby I struggled with my bowels really bad and had constipation for a long time. I had numerous tests done and they couldn’t find anything wrong. When I was a child and a teenager I had no issues as far as I was aware and had a pretty normal tummy life.
In my late teens/early twenties I was told I had IBS and to be honest I just thought I couldn’t deal with spicy food, not that I really ate it anyway.
Fast forward to January 2017.
That’s when it all started properly going wrong. I had come back from America at the start of the month after the most amazing trip ever. I remember getting Diarrhoea 20 minutes after basically eating anything and horrendous stomach cramps. Thinking back now I did have this on and off in 2016 but I just put it down to IBS. I dealt with it till April when I finally decided to go to my GP. I didn’t go earlier because let’s face it, it’s embarrassing. Nobody wants to sit down with their doctor and talk through their toilet habits.
My symptoms were mainly the pain and the constant diarrhoea and going to the toilet 7+ times a day. It was awful.
I’m extremely lucky and have the most amazing doctor and he referred me to a stomach surgeon. The stomach surgeon did some tests and realised I wasn’t surgical. He said he was going to refer me to the best Gastroenterologist he knew. Said Gastroenterologist is based at at private hospital and only works Monday evenings and Saturday mornings. I was worried that because he was at a private hospital I wouldn’t be able to see him. Luckily because my journey started with the NHS that’s where I have been able to stay and I haven’t had to pay to see my specialist.
My first appointment with my specialist was amazing he did blood tests and arranged a colonoscopy to be done pretty quickly. Unfortunately I’m one of the people where things don’t show on my blood tests or if they do they are borderline or very minor. My specialist has always said to be that my levels are always below the NHS levels which sucks so this means if I went to an NHS hospital they wouldn’t even look at me because my bloods show nothing or very little. Im so grateful that my specialist decided to delve deeper and do some more tests. I had biopsies taken during my colonoscopy. For those of you who don’t know a colonoscopy is where they put a camera up your bum and have a look around, glamourus right? I had mine done under general anaesthetic because I’m a wimp and didn’t want to be awake. I’ve also had an MRE which is smiliar to an MRI but it’s specially designed for the stomach. I’ve also more recently had a CT scan.
All of the 3 procedures show Crohns Disease but my bloods don’t. This all happened during the whole of 2017 and I finally got verbal confirmation in December 2017 that I had Crohns Disease. I was honesty relieved I finally had an answer after almost a year of tests. During the year I saw my specialist every 8 weeks and he was amazing.
After I found out I was put on a drug called Budesconide which worked well for me for a few months until I got a flare up earlier this year. I was then put onto Azathioprine as well as the Budesconide but this gave me pancreatitis. I mean does my body just hate drugs? Then I was put onto methotrexate which is another immune-suppressant medication. This means it’s weaking my immune system and I’m now more prone to infections and I’ll have to have a flu jab come winter time. I have to be very careful around people who are sick. If I get a standard cold and I don’t tell my doctor it could turn into something really serious which is terrifying.
Fast forward to today.
I came out of hospital last week after being in there for 6 days after my second flare up of the year. I went to a&e in a state. I was in extreme pain and I felt awful. They were amazing and pumped me full of so many drugs to try and help me I couldn’t fault them. 2 days after being admitted I was taken off Budesconide and put onto Predniscolne which is a stronger steroid. I started off taking 8 of these a day and I get to reduce it by 1 tablet each week until I finish. I’ve heard some horror stories about this drug and I’ve been having some weird side effects but that’s for another blog post. I’m also on so many other medications to combat the new meds. It’s crazy!
So that is basically where I’m at now and how I was diagnosed. I’m going to put a list below of the main symptoms to look out for but you don’t have to have all of these to have Crohns. Every Crohns patient is different and that’s why diagnosis is difficult and takes such a long time.
- stomach aches and cramps
- blood in your poo
- tiredness (fatigue)
- weight loss
- a high temperature (fever)
- feeling and being sick
- joint pains
- sore, red eyes
- patches of painful, red and swollen skin – usually on the legs
- mouth ulcers
My symptoms now
- Constipation and diarrhoea
- Extreme exhaustion
- Lack on concentration
- Weight loss (I’ve lost 2 stone in a year)
- Joint pain
- Mouth ulcers