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In case you want to read on, here is my IBD story, it is a little long so I apologise in advance for the length of it. 

Up until Christmas 2007 I was a pretty normal and healthy human being. On Boxing Day 2007 I got very poorly with symptoms such as diarrhoea and vomiting however I just passed it off as a bug. Several weeks had passed and I was not getting any better so I decided to book myself an appointment with my G.P. The G.P diagnosed me with IBS and sent me away with some tablets and creams and well that was that. Again several weeks had passed and symptoms were worsening so I went back to the G.P to explain what was happening but they were adamant that it was IBS and again sent me away. In the end it took my mum to go in and complain because I had lost 6 stone in weight in the space of a few weeks and enough was enough. The G.P agreed and referred me to Wrexham Maelor Hospital to see a Consultant Gastroenterologist. 

On the 15 July 2008 I had a Colonoscopy which immediately showed severe Crohn’s Colitis, the procedure was not continued due to severe colitis. I was very malnourished and was therefore admitted for treatment and nutritional support. I was initially commenced on intravenous steroids, oral metronidazole, transfused blood and Pentasa. It was suggested by the dietitian that I should have an NG feed but I refused and instead had high calorie food intake. During my hospital stay I continued to have severe abdominal pain and frequent toilet trips and was sent for a CT abdomen and a Sigmoidoscopy to see whether things were improving. I was reviewed by a Consultant Colorectal Surgeon who informed me that I may need to have surgery to remove part of my bowel and was seen by a Stoma Nurse who stated that I may need to have a stoma. At that time I refused to accept the concept of needing surgery as I was newly diagnosed with a condition that I had never heard of and was still coming to terms with it. In the end it was finally agreed that I should start Infliximab and had I not responded to the treatment, surgery would have been the only option. On the 5 August 2008 I was sent home with many tablets which included; Calcichew D3 Forte, Pentasa, Ferrous Sulphate, Prednisolone, Azathioprine, Lansoprazole, Temazapan, Fluoxetine, Mebentyl and Vitamin B12 injections. I was also given a crate full of Ensure Plus drinks which I had to drink four times a day to get my weight back to a healthy level.

On the 18 November 2008 I had an Upper GI Endoscopy and a Flexible Sigmoidoscopy. The Endoscopy showed that I had a mucosal junction at 36cm from the incisors and a Hiatus Hernia, sliding of length 4cm. The Flexible Sigmoidoscopy showed that my Crohn’s disease was mildly active and that I should therefore continue on the medication and the Infliximab infusions. I was having my Infliximab infusions every 8 weeks and on the 18 December it was noted that I was neutropenic with a neutrophil count of 1.1 and therefore the Azathioprine and Infliximab infusions were deferred. Several months later when my levels were back to normal I was restarted on the Azathioprine and Infliximab however when the Infliximab infusion started I felt like something was very seriously wrong and I tried to shout the nurse but it was too late, I blacked out and woke up attached to a heart monitor and oxygen. It was one of the scariest moments of my life!

For a few years my symptoms of Crohn’s disease seemed to settle with just the odd flare up. I managed to get through my first two years at university however in February 2011 my blood tests showed that my CRP levels were elevated at 25.7 which suggested that my Crohn’s disease was active. I was started on Prednisolone 40mg to start off with and reduced by 5mg every week. On the 1 March 2011 I had a Flexible Sigmoidoscopy which showed segmental colitis involving the sigmoid. On the 4 April 2011 it was decided that since I had not responded to the steroids, I would therefore have to consider treatment of Adalimumab (Humira) but to be considered for that treatment I would need to have a chest x-ray and blood tests. The blood tests showed that my iron levels and B12 levels were low so I was started on iron tablets and B12 injections immediately. I was started on the Humira in early May 2011 however in July 2011 I was admitted to hospital with severe abdominal pain, frequent toilet trips and extreme weight loss.

I was in hospital for just over a week, I had numerous tests including; MRI and CT scans and Sigmoidoscopies however after being told that I had a very angry bowel, I was seen by the Colorectal Surgical team on the morning of the 18 July 2011 and was told that my only option now would be to have surgery which may or may not leave me with a temporary stoma. I was seen by a stoma nurse and was dotted up for a suitable position of where the stoma would be, I was also seen by the anaesthetist and many other people and after signing my consent forms I was wheeled down to theatre for surgery. The surgery I had was a Sigmoid Colectomy and the surgeon removed over half of my large intestine and joined the two healthy ends together and I was therefore left with a temporary ileostomy to give my bowel chance to heal. Several hours later I was taken to HDU to recover which was horrendous as I was woken up every hour to check my wounds, blood pressure and heart rate and was given several bed baths which was very embarrassing. After a four week hospital stay and after struggling to recover especially with eating I was sent home.

On the 16 September I had my follow up with the surgical team and was told that I looked very well despite struggling with pain. I was also told that my mid line scar was healing well and that my stoma was pink and healthy and working well. I was told that I would need to have a Gastro Graffin Enema several months later to see whether the join had healed so that they could plan to reverse my stoma. On the 25 November I was told that my Gastro Graffin Enema results showed that the join had healed up very well and my name was then placed on the waiting list to have my reversal operation. I had my Pre-Op Assessment on the 17 January 2012 and was booked in to have my reversal surgery on the 8 February 2012. I had never been so excited to have my stoma reversed because I refused to accept it and just wanted my life back. After the surgery though I became very ill again despite being told that I should have many years in remission. I was sent for a Flexible Sigmoidoscopy on the 17 April 2012 and my worst fears were realised, my Crohn’s disease had returned and showed signs of severe colitis.

On the 30 April 2012 I attended Main Outpatients to see my Gastro consultant and was told that my blood levels were all abnormal with my CRP being elevated at 19.3 and my Ferritin being low at 6.2. It was suggested that I should try Humira again and was started on 80mg to begin with followed by 40mg every two weeks. I was reviewed by my Gastro consultant on the 11 June 2012 and was told that despite receiving regular treatment of Humira my symptoms were worsening, my weight was decreasing and my CRP levels were now elevated at 33.4 which showed that the Crohn’s disease was very active. It was decided that my Humira would be increased to 40mg weekly and it was also stated that I would be discussed in the next IBD meeting. My case was discussed in the IBD meeting on the 19 June 2012 and it was said that should I not respond to the higher dose of Humira then I would need to have further surgery which would involve having a total Colectomy with a permanent ileostomy. Previously I did not like the idea of having a permanent stoma so I had many meetings with the IBD and Surgical teams to make sure that I was 100% sure about the surgery and why it was needed.

For several weeks I was in and out of hospital however my surgeon was away on holiday and I did not feel comfortable being under another one, after all this is life changing surgery and I trusted my surgeon fully. It was decided that surgery was now the only option left and I was therefore sent for a Pre-Op Assessment. I had my surgery on the 5 September 2012 and the surgery I had was a Panproctocolectomy which involved removing the remainder of my large intestine and other parts of my digestive system and I was left with a permanent ileostomy. I was in hospital for two weeks before being sent home despite not being able to eat or keep any fluids down but they needed the bed so I had to leave. I struggled at home with eating and taking my tablets because everything I ingested just ended up being thrown back up. After four days I called an ambulance out because the pain was so severe and the pain medication was not staying down and I also was not eating. I was so weak but was told that I was not an emergency case. After numerous phone calls to the ambulance service they decided that they would come out but it would be sometime within three hours. I was taken back to the hospital with a suspected infection due to my blood pressure and pulse being too high. When I arrived at the hospital there were already three ambulances parked up waiting to go in and was told it could be a several hour wait in the ambulance but thankfully the ambulance man told A&E how serious my case was and I was wheeled in immediately. I had several tests and was sent to SAU (Surgical Assessment Unit) and then was sent back to the ward that I was previously on. I spent a further four weeks in hospital having numerous tests before finally being sent home with a diagnosis of a complicated recovery.

In the two and a half years since having surgery I returned to university to finish my degree, I got a job as a home care assistant and have been told after many mild flare ups that I am now in remission :D I graduated from University in October with a 2:2 BSc Hons in Animal Studies which was my goal. Life is great at the moment and although I have not had an easy time with my Crohn’s disease I have come through it all much stronger than I was before.

Thank you for reading my IBD story J

Natalie 

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