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Hi all. I'm new to the forum and in a bit of a whirlwind at the moment, so was just hoping for any advice/opinions. Sorry it's a long message! I'm a 39 year old guy from the UK who first fell ill when I was 19 to what I was told was Colitis. I had to have my Colon removed and an illeostomy for 3 years. I then had the reversal opps and have had a J Pouch since 2002. Everything had been absolutely fine since then and working great until around 2 years ago when I developed a Perianal Abscess out of the blue which then also led to a Fistula which had to be operated on. Since then I've had so many weird symptoms throughout my body: Urine burning problems which were investigated by a Urologist and they found no problem. Upper Gastro Indigestion problems which were investigated by an Endoscopy - no problem found. Strange leg burning and fatigue/Muzzy heads which were investigated with a Brain scan - no problems found. I've also had small non itchy rashes appear from time to time on my forearm, scalp itching, full body muscle aches (no swelling), mouth ulcers and constant fatigue/feeling run down. However, my bowel symptoms hadn't been too bad so I'd convinced myself I'd got something like ME as my blood tests were always coming back ok! It hadnt occured to me that id got IBD issues again as my symptoms were mainly outside of that and id been told that Colitis had been cured years ago! But in the last couple of months I started to get occasional bleeding and strange swings from diarreah to Constipation, so my pouch obviously wasnt behaving normally. Running out of specialists to see, I privately saw a gastro/bowel specialist who immediately said I looked like someone with IBD and he suspected Crohns! He ordered various tests which I've had. The bloods were ok, the small intestine MRI was ok, but my stool test showed a high inflammatory reading. I've also had the dreaded camera inserted last Wednesday and he says I've definitely got IBD again! There is inflammation in my Pouch, Perianal area and Small Bowel low down close to my pouch. He's taken biopsies and won't officially diagnose until they come back but he suspects Crohns. He's put me on Prednisolone whilst we wait and 4 days in I have to say I don't feel any better despite him saying I would!! I'm just pretty miserable not knowing what to do for the best. I've tried various diets without noticeable success and I don't even know what to eat for the best now! I've got young kids as well and a wife recovering from Breast Cancer, but I just feel so tired and run down all of the time and pretty useless! Has anybody else experienced this? Does it sound like I had Crohns all along for the last 20 years but it went into remission for years when my Colon was removed? Would Crohns cause so many random body symptoms like this? I guess I just need to get my body inflammation down (although blood tests show I'm ok!!!) Not sure if this 20mg Prednisolone is going to be the answer though, but here's hoping. Thanks for listening.
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