Confusing diagnosis

I would get your GP to refer you to a Gastroenterologist. It is a tough road. People think that UC is only something that is associated with bowel movements, it is not, it is an auto immune disease that can be diagnosed one week, and then dismissed as something else the next. The way you feel, the being run down, the tiredness and pain is not always so easily controlled. A GP will get you the referal, the Gastroenterologist hey will uie you ono the igt path. It is somehng thatcan come and go, and something that you learn to live with. Good luck!

I am so sorry to here about your troubles. Honestly, before I was diagnosed with UC they tried a bunch of diet changes and anti inflammatorys, which of course didn't work. They then followed with going back in forth between steroids to remicade, a mild for a chemo. The medication somewhat helped but the pain and bleeding wouldn't stop. It want until I had full removal or my large intestine and colon that the major discomfort subsided. Options exhausted, You may have reached this point as well. With problems still after the surgery I'm trying a GLUTEN FREE diet and it has, in the past week alone, improved my life. Doctors say I don't have celiac but perhaps it's just easier/healthier for my stomach.  I recommend trying it. I wish you luck!

Hi Seb,sorry to hear you are suffering. Sounds like colitis to me and you need to get an urgent referral to a gastroenterologist through your own GP. With the right meds you will feel much better,good luckx

Hi Seb, I too have UC since nov 2012 diagnosed, but prob before. You should push to go back to gastroenterolgy specialist at your hosp via gp, if you are not still already under them. Many people with uc have "satisfactory" blood results, but still experience dire symptoms; & also, did they take biopsies on your colonoscopy? often chronic (long term) inflammation is only seen on biopsy results analised in lab after a colonoscopy. There are many meds they can try with you before they even think about surgical procedures; they take perseverance though - it can be a months before improvement is gained, so patience & perspective will be needed by you. simple measures you can try that have helped me a bit are: 1) avoid fruit & veg with skins on & do not eat raw. I can eat a little of mashed carrot & swede, slightly overcooked broccoli & green beans - thats it. 2)if you feel you have times you cant eat (feel sick/stomach ache) have a banana milk shake, or small omelette. I find milk, yoghurt, eggs all tolerable & soothing/light on dig system. 3) take any med prescribed 100% & take a multivitamin. will keep an eye out for your reply/progress. take care xx

Thank you thorpeclan and Jill for your replies and advice , I will try and get a referral from my GP. Has anyone heard of colonoscopy biopsies confirming UC and then the next colonoscopy biopsies coming back clear?

thank you alexia for your reply it sounds like you've had a really tough time, I haven't had a confirmed diagnosis as yet so have not tried any medication so hopefully I have some options before considering surgery if I do in fact have UC . Can anyone tell me if joint aches and nausea could be part of UC?

Hi Seb, yes nausea experienced a lot, esp after a bm. do get joint aches, & I think that goes with the extreme tiredness. Its better with movement though. The nausea can affect your appetite too which is hopeless if you plan your meals for the week for the family and yourself, & then dont fancy it. that's why milkshakes & small omelette quite good as at least you're getting some nutrition when appetite wains.