Hi Everyone, I am new to this site, this is my story:
I always had "tummy-ache" when I was a child but don't remember ever going to the doctor with it. My Dad used to give me a cuddle and some warm milk. When I was 17, it was the summer of 1976. I went on holiday with my friend to Ireland and became very ill with bloody diarrhea and severe pain. Kept it to myself and waited till I got home. Saw my G.P. who said it was diverticulitis and I would have to learn to "live with it". Think he gave me some medication, but no information or support, there was no internet then! Over the next few weeks I became more and more sick. Unable to eat anything as it either went straight through or came back up. My Dad called into the surgery and told my doctor I wasn't getting better. He told him the same "she'll have to learn to live with it". After another week or so, my Mum decided to take me back to the doctor.
I dragged myself out of bed and managed to have a bath with her help, put on my clothes and my skirt fell off again, I had lost so much weight. When the doctor saw me, he told my Mum I was anorexic. I then collapsed in the surgery and he decided I needed to go to hospital. After seeing the gastro-enterologist and having a cold metal thing pushed up my bottom (I still remember the embarrassment of it!) he told me I had ulcerative colitis. Had prednisolone enemas and sulphasalazine in hospital and slowly began to improve. The gastro doctor told me I was sick because I drank too much fizzy stuff! I know that was long ago! I then had many years of periods of illness, steroids, hospital appointments, admissions and times of remission. Seems so long ago now. I got married, had two children and life carried on. I got part-time jobs while the children were young, but always ended up leaving as I became ill again. I think the stress of working and looking after children was too much for me. My marriage was not good.
I stayed with my Husband for the sake of the children for many years. I also think all the arguing and fighting caused me a lot of stress and made me more ill. After about 13 years of illness I found I was having a lot of trouble going to the toilet, although I still had diarrhea. I had a colonoscopy and the doctor said I had a stricture, which could be cancerous. I saw the surgeon and he said I could have a colectomy and j pouch, which would rid me of the illness. I went ahead with the surgery (which was a dreadful experience, mostly as I did not stop vomiting for weeks on end and ng tubes and anti-sickness tablets did not stop it). The surgeon came to see me after the surgery and I was pleased he told me there was no cancer. He then announced that he had found I had Crohn's Disease and not U.C., turned on his heels and walked away! I was devastated as I hoped I would be well after the surgery and I was upset as I thought removing my whole colon was unnecessary. If it was Crohn's, why did he not just do a resection? The j pouch never worked well and I was in pain all the time. By time I came home from hospital I had lost 4 stone in weight. My g.p. asked me if I was Angela's sister when I went to see him as he did not recognise me!
More years passed, I left my Husband and met a new man. Life was much happier for me. We married and I had another child. I was still ill often. I hated the steroids, the moon face, the "faraway" feeling, insomnia etc. We moved to the seaside and my new man didn't expect me to work like my first Husband had. The j pouch was not successful and I had a few more years of illness and remission, more steroids, then Infliximab. My new surgeon said I needed an ileostomy. I dreaded it. The thought of it. I thought my Husband would be disgusted by it, but I had no choice. The surgeon found more strictures and said the ileostomy had to be done and she would remove my rectum at the same time. The surgery was bad, the vomiting pulling on my stomach every time I wretched, the pain. I hated the stoma, wouldn't even look at it for a couple of weeks. The stoma nurse was great and taught me to change the bag and get used to the look of the stoma. My health improved although I had lots of problems with the ileostomy. My skin was raw, the bags came unstuck and I was miserable. My Husband was fine with the bag, I don't know why I was worried about that now. He loves me and looks after me. We crazily decided to buy a pub and although it all happened at the wrong time, moved in two weeks after the surgery!
We bought the pub so we could spend more time together and we also did it as whenever I got ill before, he had to have time off work to care for me and the children. We thought we could employ people to take over when I was ill and it would be easier. Didn't really work out that way! I began to get terrible pain soon after and none of the usual medications helped. I had a scan and MRI, nothing much on those but the pain continued. My gastro did not know what was causing it. Eventually I went to A & E in agony and became jaundiced. I was diagnosed with gallstones. The surgeon removed my gallbladder, sorted out more strictures and a hernia. After that I had more problems with the stoma as it kept retracting into my stomach. Had a re-siting of the stoma last year. I was still getting pain from the same area as my gallbladder and blood tests showed deranged liver enzymes. Had three unsuccessful ERCP's and doctors were unable to put a stent into my bile duct. Had a botox injection in the bile duct and the pain went! At last, even my Crohn's seemed much better, hardly any pain for 6 months.
The pain under my ribcage began again and I was diagnosed with Sphincter of Oddi Dysfunction. Two weeks ago I had another ERCP and pancreatic and biliary sphincterotomy. Had a stent put in as well, which needs to be removed next week. I am still getting pain and have been reading on the internet that there is a connection between Crohn's and liver problems. My gastro-enterologist wants to do another colonoscopy as the surgeon found active Crohn's when she repaired my stoma. Depending on the results, he may put me back on Infliximab. I am not on any medication at the moment. I am concerned this may be P.S.C. as my G.G.T. is still raised although the other liver function tests are o.k. I would be interested to hear from anyone else having similar problems? I have gone on for ages and would be surprised if anyone bothered to read all this, but I was asked for my story! I will also mention that my daughter was diagnosed with Crohn's Disease 6 years ago, I feel very guilty about this. I have found it very therapeutic writing all this down, I have never done that before. Angie x
I always had "tummy-ache" when I was a child but don't remember ever going to the doctor with it. My Dad used to give me a cuddle and some warm milk. When I was 17, it was the summer of 1976. I went on holiday with my friend to Ireland and became very ill with bloody diarrhea and severe pain. Kept it to myself and waited till I got home. Saw my G.P. who said it was diverticulitis and I would have to learn to "live with it". Think he gave me some medication, but no information or support, there was no internet then! Over the next few weeks I became more and more sick. Unable to eat anything as it either went straight through or came back up. My Dad called into the surgery and told my doctor I wasn't getting better. He told him the same "she'll have to learn to live with it". After another week or so, my Mum decided to take me back to the doctor.
I dragged myself out of bed and managed to have a bath with her help, put on my clothes and my skirt fell off again, I had lost so much weight. When the doctor saw me, he told my Mum I was anorexic. I then collapsed in the surgery and he decided I needed to go to hospital. After seeing the gastro-enterologist and having a cold metal thing pushed up my bottom (I still remember the embarrassment of it!) he told me I had ulcerative colitis. Had prednisolone enemas and sulphasalazine in hospital and slowly began to improve. The gastro doctor told me I was sick because I drank too much fizzy stuff! I know that was long ago! I then had many years of periods of illness, steroids, hospital appointments, admissions and times of remission. Seems so long ago now. I got married, had two children and life carried on. I got part-time jobs while the children were young, but always ended up leaving as I became ill again. I think the stress of working and looking after children was too much for me. My marriage was not good.
I stayed with my Husband for the sake of the children for many years. I also think all the arguing and fighting caused me a lot of stress and made me more ill. After about 13 years of illness I found I was having a lot of trouble going to the toilet, although I still had diarrhea. I had a colonoscopy and the doctor said I had a stricture, which could be cancerous. I saw the surgeon and he said I could have a colectomy and j pouch, which would rid me of the illness. I went ahead with the surgery (which was a dreadful experience, mostly as I did not stop vomiting for weeks on end and ng tubes and anti-sickness tablets did not stop it). The surgeon came to see me after the surgery and I was pleased he told me there was no cancer. He then announced that he had found I had Crohn's Disease and not U.C., turned on his heels and walked away! I was devastated as I hoped I would be well after the surgery and I was upset as I thought removing my whole colon was unnecessary. If it was Crohn's, why did he not just do a resection? The j pouch never worked well and I was in pain all the time. By time I came home from hospital I had lost 4 stone in weight. My g.p. asked me if I was Angela's sister when I went to see him as he did not recognise me!
More years passed, I left my Husband and met a new man. Life was much happier for me. We married and I had another child. I was still ill often. I hated the steroids, the moon face, the "faraway" feeling, insomnia etc. We moved to the seaside and my new man didn't expect me to work like my first Husband had. The j pouch was not successful and I had a few more years of illness and remission, more steroids, then Infliximab. My new surgeon said I needed an ileostomy. I dreaded it. The thought of it. I thought my Husband would be disgusted by it, but I had no choice. The surgeon found more strictures and said the ileostomy had to be done and she would remove my rectum at the same time. The surgery was bad, the vomiting pulling on my stomach every time I wretched, the pain. I hated the stoma, wouldn't even look at it for a couple of weeks. The stoma nurse was great and taught me to change the bag and get used to the look of the stoma. My health improved although I had lots of problems with the ileostomy. My skin was raw, the bags came unstuck and I was miserable. My Husband was fine with the bag, I don't know why I was worried about that now. He loves me and looks after me. We crazily decided to buy a pub and although it all happened at the wrong time, moved in two weeks after the surgery!
We bought the pub so we could spend more time together and we also did it as whenever I got ill before, he had to have time off work to care for me and the children. We thought we could employ people to take over when I was ill and it would be easier. Didn't really work out that way! I began to get terrible pain soon after and none of the usual medications helped. I had a scan and MRI, nothing much on those but the pain continued. My gastro did not know what was causing it. Eventually I went to A & E in agony and became jaundiced. I was diagnosed with gallstones. The surgeon removed my gallbladder, sorted out more strictures and a hernia. After that I had more problems with the stoma as it kept retracting into my stomach. Had a re-siting of the stoma last year. I was still getting pain from the same area as my gallbladder and blood tests showed deranged liver enzymes. Had three unsuccessful ERCP's and doctors were unable to put a stent into my bile duct. Had a botox injection in the bile duct and the pain went! At last, even my Crohn's seemed much better, hardly any pain for 6 months.
The pain under my ribcage began again and I was diagnosed with Sphincter of Oddi Dysfunction. Two weeks ago I had another ERCP and pancreatic and biliary sphincterotomy. Had a stent put in as well, which needs to be removed next week. I am still getting pain and have been reading on the internet that there is a connection between Crohn's and liver problems. My gastro-enterologist wants to do another colonoscopy as the surgeon found active Crohn's when she repaired my stoma. Depending on the results, he may put me back on Infliximab. I am not on any medication at the moment. I am concerned this may be P.S.C. as my G.G.T. is still raised although the other liver function tests are o.k. I would be interested to hear from anyone else having similar problems? I have gone on for ages and would be surprised if anyone bothered to read all this, but I was asked for my story! I will also mention that my daughter was diagnosed with Crohn's Disease 6 years ago, I feel very guilty about this. I have found it very therapeutic writing all this down, I have never done that before. Angie x
