I remember always having some sickness and bowel issues as a child. I would often be very very constipated and be sitting on the toilet for hours until I had seat marks embedded into my legs. I also had sickness bouts every few months, they would come on for a few hours and then I would be right as rain again.
Thinking back, this could have had something to do with the diagnosis of IBD (inflammatory bowel disease) many years later.
I am also very sure that a stressful situation started my first proper flare. I was going to see my sister in London the next day, but stupidly went out the night before with my purse in my handbag, in the purse was just over a hundred pounds and my train tickets, bank cards , photos and other special things.
I went to the busy bar to get a drink with my two friends and when I went to get my purse out it had gone and my bag was wide open. A wave of mixed emotions followed. I was so upset and angry and just didn’t know what to do. We went outside and there were some policemen who helped me to call the bank and cancel my card, they said I was the fourth person that hour.
I went home upset all night and my dad sorted out more train tickets ( we did eventually get the money back from them for the original ones) and I still went to London. I started to feel generally not myself, I got loose stools and when I looked in the mirror I thought my eyes looked sunken and dark.
I got home a few days later and things deteriorated from there. I started to be sick , I had an awful pain where my appendix was and I was struggling to make it in time to the toilet. The doctor came out and said he thought I had appendicitis and needed to go to hospital. ( This is not uncommon , it can mimic appendicitis) I had never ever been in hospital let alone had any surgery so was petrified. I got there and the doctor examined me. He said because of the diarrhoea he didn’t think it was my appendix and they would do a few tests and I would be admitted. The sickness, pain and diarrhoea were terrible and I thought I was dying. It was taking a while for a diagnosis and I had to have many tests. I was bleeding a lot too which was scary and I just thought ” I have cancer”. I was on a drip and often needed the toilet urgently which would cause accidents as I couldn’t get there quickly enough with the stand and drip in tow. It felt degrading and humiliating, although no nurse ever minded, I minded, I was a young woman who shouldn’t be soiling herself and need looking after.
I was put on intravenous steroids and fluids and couldn’t eat with the sickness. I was advised I might need a naso gastric tube to stop me being sick and I refused I was so scared. I was started on Olsalazine but remember at the time I wasn’t advised that I should be taking it indefinitely, so when those were finished I didnt’ get anymore and became ill again.
I started to respond to the meds and they also told me I have IBD but they were not sure if it was Crohns disease or ulcerative colitis. ( They never really knew at all because they called it indeterminate colitis after that as it could be Crohns disease even now ) I spent some years in and out of hospital with this awful disease, with many people not understanding how severely ill you can be with it. Many think that IBS is similar but I can safely say they are nothing alike. When I am in remission I have IBS so that will tell you something about it. IBD can kill you as I nearly found out last year. I am in no way saying IBS isn’t horrible, but it is not IBD.
My life was not how I imagined it should be, the illness was ruining my life, I was having flares at times when I should be well, for example when I was about to have my babies I would flare, and those flares lasted for a good few weeks after the birth. Most christmas’ were the same and I remember missing one Christmas day with my family and being stuck in bed. I was in hospital when my children were very small which was awful. Going for meals would sometimes end with me going home early because I would feel unwell.
I do think that although the surgery for me and my family was very traumatic, I can go out and enjoy my life now more than I ever could before. I have my off days but if I really think about it, it is nothing compared to the off days with an UC flare.