Confusing diagnosis

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Last autumn I was in hospital suffering from abdominal pain, fever and diarea and had a flexiscope carried out which showed inflamation throughout my colon and rectum and the biopsies came back as ulcerative colitis, 3 months later my GI requested a full colonoscopy and these results were clear, I have since had my gallbladder removed which has relieved the upper stomach pain I was experiencing, however I still have a lot of lower stomach pain, a constant urge to have a bm, occasional blood in stool occasional low grade fever and extreme tiredness.  I am also anemic and do not have constant diarea I tend to have formed stools that are difficult to pass but not hard as in constipation just very painful and often.  I am feeling very run down and have not had any follow up with a gi it just seems as if they expected the gallbladder to be the answer and have dismissed the UC.  I am feeling confused  is it possible to be dianosed with UC with biopsy initiatialy and then  the next colonoscopy be completely clear? And does this mean that I don't have UC ? I am feeling so run down I just want to know what is causing this so I can obtain treatment, any advise appreciated.

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  • Posted

    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!
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  • Posted

    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!
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  • Posted

    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
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  • Posted

    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
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    • Posted

      Hi Looloo, thank you so much for your reply and advice. They did take biopsies on both colonoscopies the first confirmed UC but the second 3/4 months later was clear, that's why I'm so confused, how can one be positive and the next not? Guess I need to get a referral from my GP to see the GI again just takes so long to get a referral appointment I'm trying to work out myself if I do have UC as I have all these symptoms and feel so lousy which is really hard when I have to work and be mummy to my 2 young children I'm hoping maybe I can do things to help with diet etc while I'm waiting for an appointment and some treatment. 
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  • Posted

    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?

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  • Posted

    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.
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