The Diagnosis....

Just before March 2013 all I could stomach was soups, liquids and Super Noodles. Just before I went home for a week I had went to the doctors as I was not feeling well, this time it was a Urinary Tract Infection (UTI) but they thought it was so bad that it was near my kidneys. So I was put on a course of antibiotics. When I went home to see my family and friends during the first week of March all I got was are you eating properly or are you taking laxatives. The answer was no to both.

My food for the majority of 6months before my diagnosis.

I had lost just under 4 stone at the time. When I came back I still had the UTI but was feeling dizzy and faint. Within a space of two weeks I had visited the Accident and Emergency 3 times. The first time I was put on a fluid drip and send home with yet more antibiotics. The second time I was hooked up to an ECG machine and sent home with nothing but told to rest up and take it easy. On the third time it was a student doctor that had said that I was at all not well and should not be sent home like the previous times, as I had hardly any strength to even stand up on my own and I was being sick.

At this stage I had lost just under 4.5 stone and the student doctor said either ulcerative colitis or Crohn's disease. I am glad he was there that day or I would probably have still not been diagnosed or either no longer here as I had been getting heart palpitations and he had said it was a sign my body was either shutting down or could not cope no more with the rapid weight loss. The third time of being in A&E I was transferred up to the Acute Medical short stay ward. In the morning I was moved to the Acute Medical Ward for Gastro and Liver care as there was a bed free for me.

In the Gastro and Liver ward I was poked and prodded for 4 weeks. Within the first two weeks I had lost more weight just bringing it to just under 5 stone in total. My consultant and his junior doctors had helped to gather all the information from me and came to a conclusion it was more like Crohn's disease than ulcerative colitis. The only reason which lead to make their decision was the numerous blood tests they had done and all of them showed different vitamin and mineral deficiencies. I was put on a number of different IV drips to boost my vitamins and minerals which I was deficient in. During my stay in the hospital I had a number of tests done to try and see what was wrong with me such as, ultrasound of my liver, kidneys and stomach, endoscopy, colonoscopy and MRI.

My home for just over 4weeks.

For the Ultrasound I was not allowed to eat anything for 6hours before the scan so, they could get a better picture of what was going on. The endoscopy, colonoscopy and MRI I had to drink a disgusting laxative which had made me sick. But because I could not keep it down they had it changed to another one which went down a bit easier but closer to the test times I was really sick so they had to give me fluid through a drip and a paracetamol drip as I was in so much pain.

When they were carrying out the endoscopy they could only find mouth ulcers and ulcers at the back of my throat which was what was causing it painful to swallow anything. In the colonoscopy they had found a lot of ulceration and inflammation in my large bowel. But the consultant said where I was getting my pain in my stomach would not be caused by where they found the Crohn's disease so he ordered a MRI scan to see if it was in my small bowel. After these procedures he had said it was definitely Crohn's disease but he wanted to see how far it had spread. He had also said something about getting put on a drip when I returned to the ward but I was not paying much attention as I had been heavily sedated and was drifting in and out. I cannot even remember getting back into my bed on the ward but I was told that I was helped back into bed as I was near enough fast asleep. I was woken up to be told my dinner had arrived but I fell back to sleep as the sedation had not worn off by that time. It was near midnight I had woken up again but because I was slightly hungry and extremely weak so, I asked for some toast and butter and Lucozade. One of the nurses actually went to the canteen to get me the Lucozade as I could just about make it to the toilet without any assistance so, they did not want to risk letting me go on my own to the canteen. Once I got some food into me I felt a bit better. The next morning I was put on antibiotic and steroid drips for 4days. On the fourth day the plaster over the cannula made my skin come out in an allergic rash so, the nurse asked the doctor could it be taken out and be put on my course of tablet antibiotics and steroids a day early. Thankfully they said yes cause no matter who puts the cannulas in makes me come out in massive bruises. I had also been started on azathioprine as well at 100mg as the dosage goes by the weight of the patient. Also my consultant was unsure of whether or not to start me on humira but would make the definite decision when he got the results back from the MRI scan.
 
A week after my endoscopy and colonoscopy procedures I got disturbed eating my breakfast which I had stolen off the breakfast cart before they started doing the rounds at 8.15am, I was rushed down to the MRI scan. It was a complete waste of time eating my breakfast as I was given more of the disgusting laxatives which I was to drink within an hour before my slot. A few days later I was told that the Crohn's had not yet spread to the small bowel. This was a good thing as he had decided not to start the humira just yet.

When it all started

This is the story of how I found out that I had Crohn’s Disease. An estimated 250,000 people in the United Kingdom alone share a similar story to me. So why haven’t more people heard of Inflammatory Bowel Disease? Well, it’s not always easy to talk about toilet problems. It can be an extremely awkward topic to approach. However, spreading awareness could one day find a cure!
 
Crohn’s can be extremely tricky to diagnose, especially when symptoms first appear as they can be pretty mild. Like many people who suffer from an IBD, it was only after a multiple doctors’ appointments, misdiagnoses and many A&E trips that I finally got diagnosed in April 2013. Unfortunately, things went extremely downhill within a space of five months and I am lucky enough to be still alive today. By the way this will be quite long, so please be patient as it is about 10 years’ worth of important information going into this.

How it all began....

It all started when I was in my early teens, I was around 12 years old at the time and I had started bleeding so, I told my mum and she thought I had started my monthly cycles. So, mum explained everything and showed me what all I had to do etc. and left me to it. Looking back now it was not the cause, I was under stress at school due to being bullied from near enough day 1 of secondary school due to the fact that I was slightly plump at that time and for being smart.

Then as time went on I just did not feel like myself so, I was in and out of seeing my GP for blood tests for numerous things. The most common thing that they had found was deficiencies especially my iron, so they kept putting it down to anaemia. The doctors back then had always put it down to my monthly cycles to decrease the iron levels to where they were, so I was constantly given iron supplements until my diagnosis. Back then I had similar symptoms to Crohn's Disease but mainly pointed at the anaemia, such as; lack of energy, fatigue, pale complexion and hair loss, this was why they overlooked the Crohn's.

It was when I was 14/15 years old I kept coming down with a stomach bug every couple of weeks during the school holidays and my mum did not think anything different as most of my family had similar illnesses at the time. However, I was in more pain than what they were all in. Around this time, I was also told I had depression and a deficiency in my B vitamins. One doctor told me to think positively in school and ignore the bullies as the stress had lowered my B vitamin levels and told me to take supplements, which was of no use as things got worse in school and I could not cope with the bullying any more. So, back to the doctors I went again as my mum took me back as I was not my usual self and she thought my iron levels had dropped again, which they had but instead of coming out with just supplements, I was prescribed anti-depressants as well. The anti-depressants was only prescribed at this age due to me trying all other methods of help first i.e. counselling.

During the summer holidays when I was 16 years old, I got lumps all over my legs, that looked similar to insect bites but, with no bite marks, and changed in a ray of colours over a space of approximately 2-4weeks starting off at red, purple, blue, black, yellow and then green. The pharmacist had said they were insect bites and told me to go see my GP for a special cream to stop me from scratching at them as they were extremely itchy at the time. These lumps kept appearing and disappearing right up to my diagnoses every 4-6months. I had other symptoms such as, fatigue, lack of energy, appetite, slight weight loss and frequent but urgent running to the toilet. This was all put down to an allergic reaction to the insect bites and the extremely hot weather.

My legs looked something similar to this when I was told it was insect bites.

At this time, I had just started my first ever job with the company I still happen to be working for today and awaiting my GCSE results. Why I was panicking over my results back then I do not know as I had worked extremely hard for all of my 8 subjects and got all good grades.

When I started Sixth form things got worse as I continued with the loss of appetite, fatigue and weight loss. It got that bad my mum physically dragged me to the doctors and they put it down to stress of my A-Levels and anaemia. So, out I can with yet more iron supplements. Things still stayed the same for the 2 years of Sixth form and the doctors could not find out what the cause of my anaemia was.

My lovely iron tablets looked like this but it was an endless pile.

Also the lumps had reappeared and they were so bad, luckily at the time I had a broken tail bone and was allowed to wear my school tracksuit bottoms instead of my skirt and tights as anything rubbing up against my skin had me screaming in pain. So, my doctor had tested me for all the allergies possible without seeing an allergy specialist and all had come back clear apart from the lactose intolerance which I had known from when I was a child, so they ruled out pet and animal allergies, food allergies and coeliac disease. Back to square one again which was what the doctor had said.

Once starting University in 2010, everything had settled for a while, which I was relieved as I was near breaking point due to all the supplements after supplements and also being attacked by the vampires who came after endless blood samples. But as time went on and second year of the degree started everything started again, lumps, loss of appetite, extreme fatigue and some more weight loss. My mum put it down to the stress of finding a placement for third year, which was extremely hard to find a decent business in hospitality where I lived in the recession as most places were closing their doors as they could not afford to stay open. Thankfully my manager at the time had agreed to take me on under her wing to train me up as a decent hospitality manager. It was about a quarter of the way through the year that I had started to notice my symptoms getting worse and everyone was saying it was because I was working too hard in the gym, not eating enough or being in work too much (this last one was what my mum kept saying). But what they did not know was that it was not any of these that was causing the problem, but it was the start of a massive flare up with the Crohn's Disease.

In August 2012, I had a bad cough for about 3 weeks so, I went to see the doctor and he was not my normal doctor so, he thought it was my asthma playing up and said if it was still there in a week to come back again. A week later I had went back with the same problem and was given a dose of antibiotics. That did not clear it up so 3 more doses was given after the first and it eventually cleared it up. With the constant use of the antibiotics over a month my symptoms got slightly worse.

At the end of October, my Area Manager had come to see everyone in my unit saying that there was an important staff meeting  and everyone must attend. That was when we all got the bad news that the unit was closing down. We were all given the choice to transfer to another unit in England but, most of the staff had families all set up and did not wish to leave. Due to my placement terms I had to look for another place as soon as possible to finish my year and I had only done 5 months in that unit. I had started looking elsewhere but everywhere had said not a chance. So, I contacted my Area Manager and asked could I apply for the position in Manchester. I had to go through the whole procedure again of the interview etc. which did not help one bit as I was told differently on the day we were told my unit was no longer trading. It had took 3 weeks to get an interview and everything sorted out in Manchester and I had started to deteriorate even more.
 
By the time I had set myself up in Manchester and left my family behind near 300miles away I had lost a stone and a bit. I was sleeping most of the day, rarely eating, was severely anaemic, drinking gallons of anything but mainly energy drinks like Lucozade and also mochas. When I had been eating, I only ate soups, bread, pasta, cereal and Super Noodles, this was all I could stomach as the thought of everything else made me feel extremely sick. In December, my right eye had become all blood shot and felt like someone had grabbed it and tried to squeeze it. I had to go to the Emergency eye Clinic at the hospital and it was episcleritis.

Crohn's and me =)

My name is Steph, I am a twenty-one year old University student going into my final year starting in September, I also happen to have Crohn's Disease.

My nephew and I in Spring 2009

Well what is Crohn's Disease?

It is described as an inflammatory bowel disease (IBD), which causes inflammation and ulceration of the gastrointestinal tract from your mouth to the anus. It is most commonly diagnosed between fifteen to thirty years of age, but can occur at any time. It is also said to be genetic (I must have been the unlucky one in my family as no one else has Crohn's Disease).

At present they do not know what causes the onset of the disease which means there is no known cure. Researchers think they have a link for Crohn's disease which is environmental, immunological and bacterial factors, but are still not one hundred percent sure what actually causes it. As there is no specific cure for Crohn’s the doctors can only help us ‘Crohnies’ by medication, surgery or helping us find a certain diets or lifestyle changes (which is different for every person with Crohn’s Disease) to help us stay in remission (when the symptoms are not prominent). If we do not stay in remission we have flare ups (when the symptoms are prominent) which is not very pleasant at times and can mean hospitalisation if the flare up is really bad.

With Crohn’s Disease simple things in life such as; going to university, going out with friends, getting out of bed and eating food becomes complicated. It is not just the disease which us ‘Crohnies’ have to deal with, it is the side effects of the medication as well as being more vulnerable to infections. However, the worst part is the sheer pain which we can get when the disease is active, and it is not just the abdomen it can be any part of the body for example, joints.

I have tried talking to my friends and family about my disease and they think life for me is easy like any normal person but I am hiding the chaos going on underneath on the outside. This is because most people think Crohn’s is like irritable bowel syndrome (IBS) and I can eat and drink everything I like, but I wish it was that simple.

Due to this I have started this blog to help people understand what us ‘Crohnies’ can go through on a daily basis and create a personal insight for those who wish to learn more about the disease, as well as raise more awareness of IBD.