Hi, my name is Clare, and I had ulcerative colitis for about thirty years with the obligatory hospital stays along the way to help with flare ups.
In about September 2015, I started with another flare in my rectum. After a few months of trying various enemas and Pentasa granules, it was time for prednisone. By now I was starting to feel very poorly with lots of running to the loo only to miss it now and again. It then spread another few inches to include some sigmoid, and my colonoscopy said it was very severe.
I was off sick from work from December 2015, and by now it way February 2016 and I was getting worse. Losing weight and being sick, I had a stay in hospital after my husband decided to take me. They sent me home after 11 days still not quite right but slightly better.
Things again went downhill, and by now I had lost at least a stone , was having spiked temperature and was being sick. I couldn’t keep anything down, and eventually I started not to be able to pee. This time when I went to A&E, I was given a catheter and taken to the colorectal ward. A surgeon came to see me, and I had to have an emergency total colectomy with permanent ileostomy the next morning after a CT scan confirmed that I was in very poorly and also had sepsis. It was a very scary time, as I was so poorly I had many complications and was in for 10 weeks. I now want people to make sure they are heard when they say they feel unwell , and even left sided colitis is still colitis and still needs as much care and attention.
I feel gastroenterologists really need to listen to patients better, and not assume that because only a small portion of bowel is affected, that this means that the patient shouldn’t be in a lot of pain or be that ill. Since that surgery in April , I have since had a perineal proctectomy, and all is well so far. Yes it’s taken me awhile to get where I am today, but I have now accepted Tomas ( my stoma) as part of me, and have set up a blog and twitter account under his name.