Okay, some of you may or may not know what crohns is but it is an inflammatory bowel disease.
“Crohn’s Disease is a condition that causes inflammation of the digestive system or gut. Crohn’s can affect any part of the gut, though the most common area affected is the end of the ileum (the last part of the small intestine)” – thanks Crohns and Colitis UK I couldn’t have explained it as well as that!!
I am one of the 115,000 people living with Crohn’s disease in the UK. This disease is starting to get more and more coverage and people are starting to become more aware of what it is all about and this is all down to the amazing work of CCUK. There is still stigma about Crohns and I still get the odd comment of “You have a pooing problem” – yes that’s true but let’s not be ignorant about it.
I regularly get messages from friends asking me about my experience with the disease and to help with problems they are having whether they are going through tests or going through the disease themselves. Although I’m trying to share the message of Crohns it isn’t a “lucky” thing to have which some people have expressed to me (strange).
After all that waffling I’ll now explain what happened to me..
I was 16/17 when I started to notice something wasn’t right with my stomach, I attended several doctors appointments where I was told it was nothing and it was just my body “growing” obviously trusting doctors I carried on and thought they were right.
Things got worse and I found myself loosing a lot of weight, bleeding and passing mucus. (Sorry for the gory details but it has to be said) I booked an appointment with a new GP and went along with my mum. He felt my stomach and immediately knew that there was something wrong. He felt a lump. I was shocked as much as he was and told me it could be the big C word or Crohns. I was referred to a specialist straight away and was seen within a week, in that time I had several blood test so they could try and figure it out before I was seen.
My consultant was lovely and so easy to talk to. I knew straight away I was in safe hands. I was weighed and was around 7 1/2 stone, this weight gradually decreased to 6 1/2 stone in a few months. My mum was taken into a room by the nurse after I spoke with my consultant and was told I needed to go to Frimley park asap to have more bloods and an X-Ray.
On the way to Frimley hospital my mum cried, I had no idea why and that panicked me more. I had my X-Ray and my stomach was soo dark you could barley see anything it was all Poo and it was stuck in my stomach. You can laugh at that, even writing that made me laugh!
A week after my 18th birthday:
The next step was an endoscopy and a colonoscopy in simpler terms I had a camera down my throat and up my bum (not the same one). Mum always made light of the situation by saying they were going to meet in the middle. The camera is the last of the worries it’s the laxatives I had to worry about, picolax. The foulest tasting thing I’ve ever had. For the procedure I was luckily given a small dose of anesthesia which made me forget everything!
After an hour of waiting for my results I was told it was Crohns, it was a relief it wasn’t the big C but it was still very scary! I was told I had lots of ulcers and fistulas with some bleeding. I was given a round on steroids (prednisone) which was gradually increased. This was to reduce the inflammation. I was alway put on a strict liquid diet, with prescribed shakes I was told to build my weight up and take around 4-6 a day, this never happened the most I would take is 2. – I look back now and wish my mum had forced fed me them! I was dumb and irresponsible.
I was still going to college and kept down a part time job at M&S. I think this made me worse as it added to the stress. I barely attended my second year of college and as a result walked away pretty much empty handed. I was so disappointed in myself, I was too ill to function let alone complete course work and revision. All of my class mates were completing their UCAS statements whilst I was spending the majority of the time in the bathroom.
During my final months at college I was rushed into hospital as I was suffering with extreme stomach cramps. I was put on a drip and given several pain killers. This is when I was told I needed surgery, It meant I needed to have laparoscopic ileocecectomy which would involve part of my bowel being taken out. I immediately said no, surgery was the last thing I wanted.
It took a few hours to take in but after my mum saying I had to have it I agreed and the doctors booked me in. This was the scariest thing I’ve ever had to do. I’m ever so thankful my mum forced me to do it as I certainly wouldn’t be here today without it.
Surgery came around fast I barley had time to think about it but I was ready to get rid of part of my infected bowel. Surgery took around 6 hours and they removed 40cm of my bowel by key hole. All I can remember is waking up asking if I had missed broadchurch.
I was really lucky to have been put in my own room and allowed as many guest as I wanted. I was connected to my morphine pump like it was my simease twin, I couldn’t let my that baby out of my sight. Without it I think the pain would have killed me, that’s not even an exaggeration it was excruciating.
After a few days of eating normal my bowel was still not working and I fell really ill. I was gifted with a lovely nose tube that was used to pump all the bile out of my stomach. Although this helped I was still slowly loosing touch with the world and was taken for an X-Ray when they discovered I had sepsis. At the time I had no idea what it was and how dangerous it was. I was fitted with a drain which got rid off all the toxins from my body.
Two weeks after surgery I was discharged. The toughest two weeks my body has ever been through. I am lucky enough to now say I am in remission and have gained all my lost weight back and more! I still suffer with quite severe fatigue which is a huge hindrance in everyday life.
I was very out of it and can’t remember all of what happened so may have missed a few things out. Thanks for reading my story and don’t hesitate to ask me questions!
Please read the following:
Crohn’s is a very individual condition – the symptoms vary from person to person, and may depend on where in the gut the disease is active.
The symptoms range from mild to severe and can change over time, too. However, the most common are:
- Abdominal pain and diarrhoea
- Tiredness and fatigue
- Feeling generally unwell or feverish
- Mouth ulcers
- Loss of appetite and weight loss
- Anaemia (a reduced level of red blood cells)
For more advice see more at: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/crohns-disease#sthash.TfDCHk1P.dpuf