I was thinking that it would be nice to share my story so far with you all, for those who don’t know. I’m Charlotte and I am 23 and my life has been put on hold due to disabling illnesses. For my whole life I have had multiple hospital admissions and suffered with chronic pain, kidney/urine infections, fatigue, dizziness and chronic slow transit constipation which has sadly got worse. I’ve also been bendy but just thought I was different.
After battling with the doctors and hospitals all my life for someone to take me seriously, I started seeing specialists in gastroenterology around 6 years ago. After exhausting medication and treatments to help with severe bowel issues I was referred to a colo-rectal surgeon 2 years ago and on 23rd May 2014 underwent major surgery to remove my large intestine. The idea of the operation was to remove the colon which wasn’t functioning and join the small intestine to the rectum and this would resolve all my issues. Sadly, this was not the case. There were complications to the operation and it was converted from laparoscopic to open surgery due to my insides being “all long and gloopy” and the surgeon not being able to see. He accidently snipped an artery and I lost a lot of blood. I ended up in high dependency having blood transfusions and one to one care. Luckily I recovered and managed to go home a few weeks later.
Unfortunately the operation doesn’t seem to have done the job it should have. I have since been left with more problems and more stomach flare ups. I also have a prolapse which causes me a lot of problems. I have been in and out of hospital and the hospital taking care of her told me they didn’t know what was wrong or how to help.
Whilst in hospital I did some research and found a neurogastroenterologist in London who had been highly recommended by people in support groups. After emailing his secretary as a plea for help I recieved an email saying the specialist was more than happy to see me, but I would need to travel to London and the appointment would cost £300. I am currently unable to go to work and my sickpay stopped in June. My wonderful family pulled together and paid for the appointment and on the 15th November 2014 me, my Mum and my partner, made the trip to London to see the specialist. Within a 45 minute appointment he has diagnosed me with 2, possibly more, rare genetic conditions and things were starting to make sense.
I was diagnosed with Ehlers-Danlos sydrome, POTS, Raynauds phenomena and I need more tests. Since my operation I’ve been struggling with food as when I eat I get bad pain and sickness and my stomach bloats up so I look 9 months pregnant! I have been prescribed Fortisips to help give me nutrition. I had to leave University and my dream of being a teacher, I lost a job, am currently off sick from work and I still have a long journey to go on after the diagnosis’s but I won’t let it beat me! I’m awaiting appointments to see a geneticist, urologist, rheumatologist, dietician, colorectal surgeon and specialists in EDS and PoTs. I hope that now I have diagnosis’s I will get the right help to manage my illnesses and I can return to University and pursue my dream of being a teacher! It may be a long journey and it may be tough at times but I am determined not to let it kick me down and to see the good in every day. I am also determined to educate others and raise awareness of EDS, POTS and Gastroparesis on my journey!
Thank you for reading my story and thank you to those who have helped and continue helping me on my journey. I have some truly amazing people in my life who pick me up when I fall down (sometimes literally) and I wouldn’t be the person I am without them.
Why not send me your story to firstname.lastname@example.org and I can share this on my blog to help us raise awareness of why this condition needs funding for research and greater awareness within the medical profession.
Love and hugs, Charlie x
This was me in recovery straight after my surgery on 23rd of May.
This was one of the first times I used my phone after surgery. It was a few weeks later and I had been moved from high dependency unit to the ward, so it was a great day!
My bendy thumb, one of the symptoms of EDS.