Trappist monks do not get ulcerative colitis. So it was psychosomatic. A name for distressing symptoms which had been going on for over two years. The top percentile of severity – said the eminent gastroenterologist. I had a serious inflammatory bowel disease – an IBD, not to be confused with Irritable Bowel Disorder, IBS.
My stomach was churning. I was retching. Then I was throwing up. I lost lots of blood each time I went to the toilet – which was a lot. I barely ate and I lost weight (good!). One Tuesday at 8am my mother brought me under protest to A and E. She told me we were doing this the night before. I told her they would send me away and tell her we were wasting their time.
I was very pleased when they stood me on the scales. And needles, or noodles I call them. They said I had no protein in my blood and attached a drip. They said they would put through a sugar solution, then a saline solution, and then they would repeat those steps. I asked them what time I would be getting out so – but they were waiting for a bed on the ward, it was quite serious. But Blessed rest.
After entry needles do not actually hurt. Rectal exam. Vanity of vanities. There was so much blood the first night one nurse thought I was on.
I went down for my first colonoscopy and watched inside me on the screen above my head. On discovering I was awake they shot in more sedation. They sent me down on the Friday as they feared I had peritonitis and would perish over the weekend!
Then the diagnosis of UC which was a relief, and I learned all about this new disease. The doctor told me not to look it up on the internet; I did – the Americans are fond of removing the bowel or part thereof, with healthcare having financial reward. Despite the best intentions of looking after myself I was hospitalised with a flare up two years later and this time there was no iron in my blood and I had a transfusion. Then a few years of eating so clean I was a nun, during which time I walked for miles and hours across mountains without needing the toilet.
In more recent years when I lost control of my symptoms again I started infusions in the local hospital, every few weeks, of a biosimilar, an immunosuppressant so new and potentially damaging you have to sign a disclaimer to take it. So once again after welcomely losing some weight it started to go back on in spades because it meant the anti-psychotic medication I am on for schizophrenia – another story – was back to being effective. I battled my weight with each course of steroids prescribed for UC, and got it off, with work, each time. Being on infusions dispenses with the need for steroids. (Being on an immunosuppressant really worried me in the early months of the Pandemic, and I was surprised they continued bringing me in for them during the period. However, the nurses said the consequences of getting Covid 19 during a flare up of UC would be more dangerous.)
I pulled my No Waiting the Bearer Has A Medical Condition and Urgently Requires To Use The Toilet just once, in a very long queue at the Tate. I confess to have used Disabled facilities on occasion if there is no one around. My obsession with toilets began decades earlier than most perhaps although my tea-drinking has now caught up. I am very amused by a letter to Oldie magazine (not mine but much appreciated) in the past couple of years from a former sales rep – he in turn was impressed by an older team member’s attention to detail; a map of his patch showing several red crosses – your clients – the rep supposed – public toilets came the reply.
The NHS website explains ulcerative colitis as:
A long-term condition where the colon and rectum become inflamed.
The colon is the large intestine (bowel) and the rectum is the end of the bowel where poo is stored.
Small ulcers can develop on the colon’s lining, and can bleed and produce pus.