Hi, I was diagnosed with distal UC back in 2004 after I started having bloody stools. Eventually steroids and Azathioprine put me into remission until 2011 when initially I got severe inflammation in my joints followed by bleeding and watery stools. I kept going back to my gastro Dr when the meds were not working. My symptoms were getting worse and they refused to do a full colonoscopy saying I only needed a sigmoidoscopy because it is only in the last part of my colon. Well as I was getting sicker and sicker and still they refused to do colonoscopy I managed to go private and have a full colonoscopy done. By this time I was becoming severely ill but my inflammatory markers didn’t rise at all. I had full colonoscopy for it to reveal severe aggressive Crohn’s colitis and it was in my entire colon.I was so ill when I had this that they kept me in overnight, changed my meds and put me on infliximab infusions.
This settled things down for about 4 months but then I ended up with emergency surgery and had a permanent ileostomy. I had 2 further ops to removed stump and sew up bottom and to resite my stoma after a strangulated hernia. I also developed an abscess in lower abdomen where colon was removed so had this operated on.
I was then very well for 3 years. In the middle of 2017 I went back to see gastro consultant complaining of bloating, tender, swollen abdomen, joint problems and he asked me to do calpotectin test which came back normal. I had bloods done, small bowel MRI with contrast, CT scans the lot. At this point the symptoms were mild but I knew something was wrong. I kept complaining about pain under right rib as well as my whole abdomen and as time went on it got worse. An MRI scan noted gallstones way back in 2016 so this was noted down. Eventually they came to the conclusion that I needed gall bladder removed. This was correct as it turns out it was chronically inflamed!Anyway, after having this removed in July 2018 I was hoping that would be the end of my troubles however in the November 2018 I started getting some of the pain I was getting before come back. It would firstly flare up quite mildly and would only last about a week but in January 2019 this year I began to feel more and more unwell. I have spikes in my temperature rising to 38.5. I developed another abscess and was taken into hospital where I got very unwell but had it drained and gradually got back on my feet although I am still getting what I call flare ups. Swollen, tender and bloated abdomen with rashes appearing. Lack of appetite, lots of water and gas output and now its got to the point where I can only have liquids and the days of feeling well are virtually non existent. Cal protection is normal, Bloods are normal and small bowel MRI (without contrast) was normal. I have just had the Capsule Endoscopy test done and was told it was normal. I viewed all the footage in this test myself as it was going through. It took 6 hours to go through my small bowel and everything looked ok to my untrained eye until I got to last 30 mins where I saw these images. Now I know only an expert can really understand these pictures but I really cant help feeling its not right especially as how ill I’ve become. I can’t eat anything fibrous at all. It has to be low/no residue and I have no appetite, belly is so sore I cant do up my trousers and Ive lost 3-4 KGs in the last 6 weeks and I can’t maintain concentration! I really don’t know what else to do. I run my own business as a mobile hairdresser but I’m having more and more time off! It’s a nightmare!
This settled things down for about 4 months but then I ended up with emergency surgery and had a permanent ileostomy. I had 2 further ops to removed stump and sew up bottom and to resite my stoma after a strangulated hernia. I also developed an abscess in lower abdomen where colon was removed so had this operated on.
I was then very well for 3 years. In the middle of 2017 I went back to see gastro consultant complaining of bloating, tender, swollen abdomen, joint problems and he asked me to do calpotectin test which came back normal. I had bloods done, small bowel MRI with contrast, CT scans the lot. At this point the symptoms were mild but I knew something was wrong. I kept complaining about pain under right rib as well as my whole abdomen and as time went on it got worse. An MRI scan noted gallstones way back in 2016 so this was noted down. Eventually they came to the conclusion that I needed gall bladder removed. This was correct as it turns out it was chronically inflamed!Anyway, after having this removed in July 2018 I was hoping that would be the end of my troubles however in the November 2018 I started getting some of the pain I was getting before come back. It would firstly flare up quite mildly and would only last about a week but in January 2019 this year I began to feel more and more unwell. I have spikes in my temperature rising to 38.5. I developed another abscess and was taken into hospital where I got very unwell but had it drained and gradually got back on my feet although I am still getting what I call flare ups. Swollen, tender and bloated abdomen with rashes appearing. Lack of appetite, lots of water and gas output and now its got to the point where I can only have liquids and the days of feeling well are virtually non existent. Cal protection is normal, Bloods are normal and small bowel MRI (without contrast) was normal. I have just had the Capsule Endoscopy test done and was told it was normal. I viewed all the footage in this test myself as it was going through. It took 6 hours to go through my small bowel and everything looked ok to my untrained eye until I got to last 30 mins where I saw these images. Now I know only an expert can really understand these pictures but I really cant help feeling its not right especially as how ill I’ve become. I can’t eat anything fibrous at all. It has to be low/no residue and I have no appetite, belly is so sore I cant do up my trousers and Ive lost 3-4 KGs in the last 6 weeks and I can’t maintain concentration! I really don’t know what else to do. I run my own business as a mobile hairdresser but I’m having more and more time off! It’s a nightmare!
