The second part to the guest post that the awesome Gabi Cox has written for me. You can find the first part here
“This however all changed in June 2012 when I started noticing blood in my stool. When it did not go away after a two or three weeks I contacted my IBD nurse and went off on holiday. I didn’t hear back from her for a while and as I was feeling healthy apart from that one symptom I just got on with my Summer like a normal 20 year old. It was only in September of the same year that I began to notice other Crohn’s symptoms returning. I felt under the weather, was absolutely exhausted, had constant bleeding and a lot of pain in my tail end. Unlike previous Crohn’s flare ups there was no urgency in using the toilet or frequent trips to the loo which I found both confusing and worrying. I immediately contacted my consultant who organised me a flexi sigmoidoscopy and an MRI scan. I giggled my way through my first MRI, thanks to Scott Mills, Innuendo Bingo on BBCR1.
My flexi was not so funny, I was in a lot of pain and the sedation barely had an effect, I have since blocked out most of that day as I think my body found it too traumatic. I don’t like to think about it as it brings back awful feelings and a wave of anxiety. I just remember the agony I was in and the horrific feeling of being completely out of control. I vomited on the way home, which I have since been told was due to shock.
These tests were the first of many in the battle to work out why I was so un well. I was told I had perianal disease including an abscess, fistula and a fissure, which explained the agony I was in. The pain was so bad I could not sit and would need daily baths to ease the inflammation. Over a two or three month period I was put on two courses of antibiotics to try and treat the infection. But no matter what we tried my disease was never bought under control. I remember one particular night I had a temperature of 39.9 but felt incredibly cold, I was shaking and sweating at the same time. I don’t think I have ever felt so poorly.
It was about this time that I also started developing very painful and stiff joints with my knee and ankle swelling to double their size.
In December 2012 I was hospitalised after a routine out patients appointment. I think it took my consultant seeing me to realise how bad I was. I am not a moaner and I never make a fuss, I like to think this is a good character trait but in this instant it did not help me. I was immediately put on a ward and spent the next 9 days in hospital. I was released in time for Christmas and was given armfulls of medication to try and keep me well.
Unfortunately this didn’t work and I continued to constantly be on the brink of a serious flare.
Despite everyones best efforts at the end of April 2013 it was decided that surgery was the only option I had left. I remember laughing when I was told that I was to have an ileostomy, by this point I was just exhausted with everything and nothing really surprised me. Again the wait to see the surgeon was weeks and again I fell in to a very sorry state. My joints got worse, and I was left initially on crutches, but eventually in a wheelchair. When I did finally meet my surgeon I assumed the waiting list would be long, he stunned me however with suggesting he operate that night. My jaw hit the floor and I think my facial expression said it all so he agreed to operate two days later. When I had been feeling so poorly for so many months, two days were not going to make any difference! I think it was at this point that Crohn’s hit me. The night before surgery I lay awake, a nervous wreck, crying my eyes out. My amazing boyfriend held me as I let it all out, probably for the first time since my diagnosis nearly six years before.
On June 6th 2013 I was fitted with my stoma, Margaret. I spent five days in hospital and am now recovering at home. It is still very early days as I am not even four weeks on from surgery, and Margaret and I are still just getting to know each other. So far recovery has not been a smooth ride thanks to my lowered immune system but I know I will get there in the end and I will be able to get on with my life.
You never know, one day I may even be picture on a beach looking proud and healthy, just like Steph.”
Find me at @gabicox12 & www.giftofthegab1.blogspot.co.uk to follow my journey with Margaret