I am a 37 year old female and was diagnosed with Crohn's Disease aged 15. My parents used to have a house in Stratford-Upon-Avon and I came down one morning and mum asked me what I had in my mouth. Nothing I told her, she thought I had a golf ball in my mouth as it was swollen on one side along the jawline. Along the gumline was a flap of skin which had grown and become sore, this was causing the swelling. A trip to the dentist and a biopsy later and I was diagnosed with Crohn's Disease. I count myself fortunate in a way because I went through none of the trouble with ongoing diagnosis issues. When I was diagnosed I didn't even have any bowel problems, they came about 6 months later.....
...I started having accidents at night. Sometimes I would have two or even three accidents where I would soil the bedsheets. I started getting tummy pain, diarrhoea etc. From the ages of 16 to 21 it just steadily got worse and worse. I didn't realise how bad it had got because it developed so gradually. By the time I was 21 I was bed-ridden at University. I only got out of bed to go to lectures and even then I still missed loads. I was in terrible pain all of the time, eating was excrutiating, i used to roll around on the floor in agony. I never felt well and had become used to being in constant pain. Eventually I saw sense and phoned my dad to tell him that something had to be done, I had had enough. The medical support up to this point had been almost nil. I used to go to a clinic at a hospital in Liverpool where I would be kept waiting for hours only to be seen by a junior with no history of me and usually no notes, no clue and no treatment!
Shortly after I rang my dad, a relative who was a radiographer saw me and gave me a Barium meal. I managed about half a glass of the pink liquid and after the x-ray it soon became apparent why! There were two severe strictures in my small bowel where it joined my large bowel and two large areas of swollen bowel before each stricture. I saw a surgeon who told me that he had to operate very soon. Within a matter of weeks I was at the private Alexandra Hospital in Cheadle, Manchester undergoing what I was told would be a fairly routine bowel resection surgery which would keep me in hospital for about a week. On opening me up my surgeon found several large abscesses and because my bowel was much worse than he had anticipated he decided to let the bowel heal properly before re-joining it so I woke up with an ileostomy! The idea was to let the bowel heal for about a month and then perform another resection to rejoin my bowel. I never got out of hospital during the four weeks I had a bag as kept losing weight. I am nearly 6ft tall and got down to 7.5 stone! After my bowel was rejoined and i had recovered from my second operation I was allowed home. In all I had been in hospital for over 6 weeks!
It took me fully a year to recover from my bowel surgery, the immediate aftermath was terrible I was going to the toilet over 20 times a day, I think my record was 28 and the burning to my rectum was intense! Slowly and surely though I did recover and most importantly of all the pain had gone, there was no pain any more. It was a massive relief for me.
The next 5 or 6 years were fairly uneventful, i got a job, started living my life, going to nightclubs, things I couldn't do when I was a teenager as I was too ill. I effectively had lost 6 years of my life and for the first time I could enjoy myself. I still had diarrhoea and urgency but at least I could control it to some extent and I still had no pain. I used to have a mental map of where all the loos were and this became second nature to me and I still do this today.
I had a few minor flare ups after 5 years but these have always been controlled quickly with prednisolone. My problems now are I believe nothing to do with my Crohn's. I have terrible urgency along with bowel cramps, wind and high frequency, i often go 10+ times a day. There is no pain as such and my bowel motions are made up of lots of small pieces of poo that float on the top of the water and are a bugger to flush! I am 100% convinced I now have IBS as well as the Crohn's although the Crohn's is not currently flaring.
I take buscopan and mebeverine along with enteric coated peppermint capsules to help relieve the wind. Does anyone else have IBS problems on top of a history of Crohn's or UC?
Thanks, Emma
...I started having accidents at night. Sometimes I would have two or even three accidents where I would soil the bedsheets. I started getting tummy pain, diarrhoea etc. From the ages of 16 to 21 it just steadily got worse and worse. I didn't realise how bad it had got because it developed so gradually. By the time I was 21 I was bed-ridden at University. I only got out of bed to go to lectures and even then I still missed loads. I was in terrible pain all of the time, eating was excrutiating, i used to roll around on the floor in agony. I never felt well and had become used to being in constant pain. Eventually I saw sense and phoned my dad to tell him that something had to be done, I had had enough. The medical support up to this point had been almost nil. I used to go to a clinic at a hospital in Liverpool where I would be kept waiting for hours only to be seen by a junior with no history of me and usually no notes, no clue and no treatment!
Shortly after I rang my dad, a relative who was a radiographer saw me and gave me a Barium meal. I managed about half a glass of the pink liquid and after the x-ray it soon became apparent why! There were two severe strictures in my small bowel where it joined my large bowel and two large areas of swollen bowel before each stricture. I saw a surgeon who told me that he had to operate very soon. Within a matter of weeks I was at the private Alexandra Hospital in Cheadle, Manchester undergoing what I was told would be a fairly routine bowel resection surgery which would keep me in hospital for about a week. On opening me up my surgeon found several large abscesses and because my bowel was much worse than he had anticipated he decided to let the bowel heal properly before re-joining it so I woke up with an ileostomy! The idea was to let the bowel heal for about a month and then perform another resection to rejoin my bowel. I never got out of hospital during the four weeks I had a bag as kept losing weight. I am nearly 6ft tall and got down to 7.5 stone! After my bowel was rejoined and i had recovered from my second operation I was allowed home. In all I had been in hospital for over 6 weeks!
It took me fully a year to recover from my bowel surgery, the immediate aftermath was terrible I was going to the toilet over 20 times a day, I think my record was 28 and the burning to my rectum was intense! Slowly and surely though I did recover and most importantly of all the pain had gone, there was no pain any more. It was a massive relief for me.
The next 5 or 6 years were fairly uneventful, i got a job, started living my life, going to nightclubs, things I couldn't do when I was a teenager as I was too ill. I effectively had lost 6 years of my life and for the first time I could enjoy myself. I still had diarrhoea and urgency but at least I could control it to some extent and I still had no pain. I used to have a mental map of where all the loos were and this became second nature to me and I still do this today.
I had a few minor flare ups after 5 years but these have always been controlled quickly with prednisolone. My problems now are I believe nothing to do with my Crohn's. I have terrible urgency along with bowel cramps, wind and high frequency, i often go 10+ times a day. There is no pain as such and my bowel motions are made up of lots of small pieces of poo that float on the top of the water and are a bugger to flush! I am 100% convinced I now have IBS as well as the Crohn's although the Crohn's is not currently flaring.
I take buscopan and mebeverine along with enteric coated peppermint capsules to help relieve the wind. Does anyone else have IBS problems on top of a history of Crohn's or UC?
Thanks, Emma
