My explanation of Crohns. This is the description I give to me when they ask me what my illness is. I say that it doesn’t usually affect my on a day to day basis (a little white lie). But when I get ill, a number of things can happen mainly I can have ulcers throughout my digestive system or my intestines become inflamed and swell up. A hell of a lot of symptoms occur with this but this is the easiest way I can describe it, I understand this isn’t very informative but it’s the basics.
Let’s start at the very beginning. My diagnoses. In all honesty I don’t remember a lot about this. I was diagnosed with Crohns around my 8th birthday. I think I was suffering for a few months before diagnoses. I have a couple of very specific memories of feeling ill the first is of myself at dinner with the family and my mom had cooked spaghetti Bolognese I remember having just one bite and it caused pain so I spent the rest of the meal just pushing the food around my plate to make it look like I had eaten much more. I also recall Christmas day. I was lying on the settee in excruciating pain, I couldn’t move and my brothers had to pass me my presents and help me open them.
The main symptoms I recall was stomach pains, from the smallest bite of food, even from drinking water, I was being sick a lot, I was extremely tired and had no energy and my hair was falling out (which I didn’t know at the time as I was still at the stage of my mom doing my hair). So after a few months of extensive tests including endoscopies, colonoscopies, biopsies, bariums, X-rays, Ultrasounds, EUA’s (Examination Under Anaesthetic), White Blood cell scans, Blood tests, Urine tests, MRI scans and MRE scans I was diagnosed with Crohns Disease. I had no idea what this meant. I was way too young to understand this. All I knew was that it was painful to eat so I didn’t want to eat. Simple. Be careful what you wish for..after I was diagnosed I didn’t eat for 2-3 months. I was given a NG (nasogastric) tube, which is a feeding tube, it is inserted through the nose and goes down the throat into the stomach. I had to have this tube in constantly and for 22 hours a day I would be hooked up to a machine which would pump through a feed made up of all the vitamins, minerals and healthy calories my body needed in order to recover and become healthy again. This along with some strong medication did indeed do the trick and I remained well and virtually symptom free until I turned 13.
As if being 13 years old isn’t hard enough, with school, puberty and boys, I also had to start worrying about my health. By this time my medication had changed a couple of times into a slightly stronger tablets, but from what I recall my symptoms came on pretty drastically. As in within a couple of weeks I went from being as healthy as someone could be to my mom driving me up to the hospital in the middle of the night because I was in so much pain I couldn’t walk, I couldn’t keep any food down, it even got to the point where I was bringing up my own stomach lining because there was physically nothing else to come up.
A week or so later I was due for surgery. I was in the theatre for over 4 hours. The operation itself was called a laparotomy, during this operation I had about 20 inches of my intestines removed as they had become so ulcerated and inflamed they had actually collapsed on themselves and far beyond the point the point of medication doing anything. The part of my intestine that had been removed was the terminal ileum, which the connection joining the small bowel to the large bowel
It was at this point I started to realise the severity of my illness and that I was going to have to learn how to look after myself. I had 3 months off school to recover from this operation, I had another change of medication and went back to having the NG tube but by this point the feed that went through the tube had been modified so that you could actually drink it in little 300ml ‘milkshakes’. So I would have 6-8 of these a day along with the NG tube at night (by this point I had learned to pass this myself). When I went back to school after the April half term I remained well again for at least 18 months, and I mean extremely well.
For a few years after I still struggled with what me and my family would call blips. Where I would have a few weeks of being bad but then it would resolve itself by either my liquid diet or change in medication, the medication was getting stronger as I was getting older, I started having to give myself injections (A list of medications will be supplied at the end). This was the worst of it until I turned 17 I when I ended up back in hospital. Twice.
I was in for ten days was out for a month back in for another ten days because I hadn’t recovered properly the first time. We believe this was caused by stress ‘at the time my parents had split up a couple of weeks before’. I didn’t cope with it too well, this was my body’s way of telling me I need to deal with things and voice myself, cry, whatever so that I don’t bottle thing up and cause this damage to myself. Another change in medication occurred I was now given infusions (I would be on a drip for a day) administered by the hospital. To this day I think this was the most dramatic turnaround I have ever experienced, after my first treatment I got home had a 20 hour sleep, woke up and felt incredible. Unfortunately although the feeling remained I was only on the treatment for about 6 months as I had an allergic reaction where my temperature rose dramatically after that I taken off this treatment.
I was now due to change hospitals. I was 17 and had been looked after by the Birminghams Childrens Hospital for nearly ten years. I was incredibly lucky to have this kind of care on my door step. I was now being transferred care between two hospitals to Derriford Hospital in Plymouth (I was due to go to uni in Plymouth) and Queen Elizabeth back in Birmingham for when I needed treatment during the university breaks. During the ages of 18-21 (my time at uni) again I suffered with blips and other side effects of Crohns but nothing that a quick medication change for my liquid diet couldn’t fix.