Being diagnosed with IBD, my story- Crohns and Colitis awareness week 1-7 Dec



The most usual symptom of ulcerative colitis is diarrhoea, mostly bloody. Bleeding ulcers and pain are another. Extreme tiredness and weight loss can and usually do occur. Crohns disease is very similar but can affect the whole digestive tract, where as colitis affects the large bowel. ( There are other manifestations of both diseases that affect the whole body).

My story starts about 30 yrs ago when I was in my late teens early twenties. I was the usual teen, out most nights managing to get to work the next day. Totally enjoying life. Then wham…..

I had gone out with friends to town and was going to visit my sister in London the following day. Stupidly I had taken my purse that had train tickets, credit cards and photos in, plus extra money for the trip ( I know, complete idiot). I remember going to the bar and feeling for my bag and realising the zip was open and my purse had gone. I was in total shock and didn’t know what to do. I told my friends and we had a look round, went to the toilets, and generally panicked. I went outside and found two policemen, I told them and they said that I was the fourth one that hour. They helped me cancel my cards and advised me to look in the bins around the square. Nothing. These people were going to have fun with my stuff and money. Grrrrrr, I am totally convinced that it started the IBD, yes I might have had it in me but that triggered the reaction. If only those selfish people knew what stealing my purse actually did to me…..

I had to go home ,and we rang our parents for a lift ( I had no money for taxis or even the bus). After a lot of hassle, I still went to London to see my sister. Dad managed to get my money back from the original tickets.

When I was there I started to feel unwell. I got diarrhoea and remember looking in the mirror thinking I looked very dark under my eyes. I came home a few days later and was being sick along with the diarrhoea. I started getting a contraction type pain near my appendix that made me sick. I became very unwell and had to have the doctor to me. He thought I had appendicitis and told me I needed to go to hospital, I was petrified having never been in hospital in my life. My mum and dad were away so my friends took me.

I was taken straight to a surgical ward and the doctor came to talk to us. He put a gloved finger up my bottom ( as you can imagine, I was a young woman and he was quite a dishy doc so I was mortified). They did various other checks and it was decided I didn’t have appendicitis but they were not sure what yet.

Mum and dad were back and spent most of the time at the hospital with me when allowed. I was put on a drip poked and prodded and was really ill. I was being sick with the pain constantly and was threatened with the NG tube if it didn’t stop. I refused and suffered the sickness. Things became worse when I went to the toilet and lots of blood came out. I often didn’t make it to the toilet either, this was awful and I dreaded the pains that made me want to go because I knew I wouldn’t make it. I thought I was dying and the doctors were still unsure what was wrong. My stool samples were so thin and bloody that they couldn’t grow anything from them in the lab. I lost so much weight that I struggled to walk. I was given steroids intravenously along with fluids and needed a daily injection into my tummy to stop blood clots.

One memory was of me trying to get to the toilet quickly with a drip in tow. I got into the cubicle and missed the toilet, there was blood and poo on my nightie and on the floor, I didn’t have a clue what to do, I was attached to the drip so couldn’t take the nightie off. I pulled the emergency cord and a young male nurse knocked on the door. I was so embarrassed I asked if he minded getting a female nurse to help me, he didn’t of course but I felt awful. I had never experienced this kind of feeling before and I didn’t like it at all.

The pain was still there like a contraction and once, I remember lying against my mum and suddenly the pain eased for a bit for the first time in days, I told her that I might have to get some sleep incase it came back, I didn’t dare move and I managed to be comfy for a short while.

After ten days of shear hell, I turned a corner and started to improve. The euphoria was amazing, it was strange after so long feeling very ill to feel well again.

The doctors then came to see me and informed me I had IBD but they weren’t sure if it was crohns or ulcerative colitis. I didn’t get much information and at that point wasn’t put on meds. I came home to recover and after two weeks at home I started again with the pain, sickness and diarrhoea. I was totally upset and didn’t have a clue what was happening to me. I became bed bound once more and the GP came again and told me I needed to go back to hospital. Off we went again and again I was strapped to the drip etc..

Again I was sick and had bloody diarrhoea, and was on the ward for another ten days.

This time I was given some new meds called Olsalazine along with the steroids. I began to improve again and was discharged back to my parents care. I was tapering off the steroids and was ok.

Between times, I had a barium enema and barium meal, now there’s a treat, not.

After a few more weeks those dreaded symptoms again returned. I was totally devastated and was back in the hospital. This time we realised that I was supposed to carry on with the Olsalazine but was never told this so when I had my last one that was given, I didn’t take anymore. As I said earlier I wasn’t really given any idea what to expect with the disease and what the outcome could be in the future. Although this time they gave me information on Crohns and Colitis UK. I decided to join and was so glad I had. I began to understand my disease and what it could mean for me in the future.

After a few years I was diagnosed with Crohns disease so I at least knew what to expect. But strangely this diagnosis was changed to Crohns colitis or indeterminate colitis because they couldn’t decide which one.

The following years were difficult, I married and had children with flare ups that lead to hospital again , which became much harder when you have a young family. Christmas’s usually meant a flare up and I hated it. I hated what this disease was doing to me and the fact that family life was often disrupted. One particular flare was so painful on the toilet that I was sick then fainted. My husband heard me shout when I came round. It was very scary, that happened twice.

I remember being in a long flare that grumbled along and one gastroenterologist telling me to spend quality time with my children because I may need big surgery. This was very scary stuff.

I was eventually put onto Azathioprine which put me in a very long remission ( more or less, I still got bouts of diarrhoea ) of about 14 yrs, which I was taken off due to possible long term side effects. This was the start of my last flare before surgery.

The rest is Tomas the stoma.