About: St James's University Hospital / Gastroenterology St James's University Hospital Gastroenterology LS9 7TF St James's University Hospital / General surgery St James's University Hospital General surgery LS9 7TF
Posted by MissL (as ),
So I thought I had Irritable Bowel Syndrome, with symptoms of diarrhoea, pain/cramping and nausea which started when I was about 17. All this got progressively worse over the years and I convinced myself that certain foods were making it worse, although in all honesty I couldn't eat anything at all by mid 2014 (I was 23/24).
In about the August the pain had got pretty bad and I started skipping periods and getting hot and cold flushes. I went to my GP but skipped out the part about diarrhoea and pain because I was convinced it was IBS and they couldn't do anything. Anyway had some blood tests and nothing showed except for low iron. So I just carried on.
In the October of 2014 I got an infection in my gum and spent a week dosed up on Ibuprophen and antibiotics to clear it. Soon after that the pain in my abdomen became unbearable. It would still come in phases, but I would be doubled up in agony when it did. I figured out that the less I ate the less pain I got so I began avoiding food. Now I thought something was actually wrong (like my appendix or something) and I went back to the GPs in early November. They did some more blood tests and found my CRP levels were high. They referred me to a Gastroenterologist but my appointment wasn't until January. Again I just carried on, going to work every day, popping paracetamol and not eating.
By christmas eve the pain was unreal. I had temperatures of 39. 9 which I could not bring down. I would wake up every night physically shaking and not be able to get warm wrapped in my dressing gown and quilt, electric blanket on. And my wonderful boyfriend would lie and hold me in his arms until my temperature eventually went the other way and then I would be able to cool down. It was terrifying and horrible.
I remember going to my mums on boxing day and nearly passing out. My mum and grandma wanted me to go to A n E and I was still saying im ok. The 27th December after 2 days of literally sleeping and crying I went back to the Drs. More bloods. On the 31st I got a phone call at work and was told I must come to the surgery ASAP. I left work and went there. They sent me to the hospital, which I was dreading. My CRP and gone really high since the last blood tests and they explained it could be a number of reasons.
So off I went to the hospital with my incredible partner and mum. I got put in an isolated room as they thought I may be infectious. I knew this was ridiculous but obviously understood it was nessacary. They thought I might have CDIF. An infection caused by antibiotics. They did tests, xrays and a CT scan. It was my little girls 3rd birthday and I was desperate to go home and not miss her party.
On the Saturday morning the nurse said most of my test results were clear so I could go to my daughters party but I had to come back Monday. It hit me so hard that weekend. The pain was unreal. High temperatures were still there. I literally had 0 energy. People tell you they are tired, but this was a whole new level. I somehow got through the weekend and came back.
The nurses on the ward I had gone to weren't expecting me but made some phone calls and after a little wait a DR came to see me and told me I had what they thought was Crohn's Disease (needed confirming) and my bowel had perforated and my abdomen wall was also infected as a result. I had to have surgery to remove the bad part and have it stiched back together, or in a worse case scenario have a stoma. I think I literally cried for the next 2 days until I had my op.
I was moved to the gastro ward, and the team on there were amazing. There was one DR with red hair, I can't remember her name, who I had seen when I first arrived, who came just to see how I was getting on. She was so kind. I was still in an isolated room while the rest of my results came back but it felt so much happier and I felt like the nurses and DRs weren't frightened to come in the room. They wanted to come and check I was ok.
A Stoma specialist nurse came to see me, to draw on a site for the stoma and see how I was feeling. I think she was called Therese. She had so much time for me and sat and chatted and reassured me so much. I'll always be thankful for this support.
So surgery day came in January 2015. I was so scared. The nurse came all the way to the theatre with me and was so kind. The operation was complicated and my bowel was worse than they thought but I was lucky and avoided a Stoma thanks to my amazing surgeon Mr Botteril and his team.
The further 2 and a half weeks are a bit of a blur, but I do remember the senior nurse on the final ward I was on. Something Beaver ward or something. She was Irish and looked after me so well. She made me eat and gave me extra pillows and blankets when I needed. My scaring was minimal and I eventually could go home!
I have also received fab after care as an outpatient since and have never felt better.