Hi, I have Crohn's/Colitis as diagnosed and I have a twisted small bowel, adhesions, incontinence , osteoporosis, crumbling at the base of my spine, Crohns, chronic pain, chronic fatigue and permanent nerve damage in the area where my anus and rectum used to be' I have had them removed' all due to many years of suffering from Crohn's/Colitis. It started a Ulcerative Colitis and then later when all the effect parts had been removed It came back and I was diagnosed as Crohn's/Colitis.
Over the last couple of years the Pain and incontinence has become intolerable, with many Pain and 'incontinence accidents' happening when I am away from home.The pain becomes worse as my tummy blocks up eventually giving way. ( I will spear you the details).
Anyway I started to control it by not eating for a few days before I went anywhere. Unfortunately although this works I lost a great deal of weight, ended up in hospital and I became critical. So now I tend to stay very close to home.
I have started to see a psychiatrist who specialises in digestive diseases, to help with the mental effects of being permanently incontinence and to try and get some sort of life back.
Last week on my way home after an appointment with him I had to run into a large department store 'John Lewis' to use the Disabled toilet. When I got there the disabled toilet was engaged so I waited. After a while the door opened and out came a gentleman and as I approached the toilet door began he shouting at me. Saying that the toilet was for the disabled only and that I am not to use it. A crowd began to gather and one person said to another 'its about time someone said that' while the gentleman continued shouting at me. My embarrassment was accompanied by a very dry mouth and I found I could not speak. I could feel the poo starting to run out of my stoma bag flange and trickle down my tummy. So without thinking I quickly lifted my top. The crowd and the gentleman had full view of what is left of my tummy complete with much scaring and a full leaking stoma bag with stream of poo running out the side and down my body and leg. At this the crowd quick disappeared and the gentleman walked away waving his arms saying ' well that's ok then'.
I washed myself the best I could but was so upset that did not want to come out of the disabled toilet. I waited for ages until I could be sure everyone was gone. I then quickly ran out and found my carer saying that we have to quickly go.
The reason I write this is to ask people to remind their friends and families that not all disabilities are visible and such a circumstance can be horrible for anyone in that position. As for me, well I have found that what little confidence I had gained, with the help of my psychiatrist, has completely gone. And if by some pure miracle that gentleman reads this then I would like to say to that gentleman that actually 'No its not Ok'
