Diagnosed with indeterminate colitis. Advice regarding symptoms please.

Sounds rather like you have a hiatus hernia, sounds like a endoscopy is required. Hope you soon feel better.

sorry to hear about your condition.I feel the same about things getting betterwhen you try to tell the doctor about your symptoms they look at you has if you got two heads.hope every thing turns out ok.

Is it worth returning to your doctor again and getting a referral to have your small bowel investigated?  It sounds like you're having a miserable time.  Do let us know what your continence nurse adv ises.

Hi kinks. sorry you are feeling so unwell. i too suffer from colitis & am suffering at present & having further tests under gastro dept at hosp. Have they put you on any oral steroids such as budesonide or prednisolone to calm your flare down? They often do this to get patients into remission once active inflammation has been confirmed on colonoscopy, & then keep you on maintenance meds (like asacol or pentasa)once the steroids have got you under control. is your calprotectin level really 1780 or was that a typing error? that is VERY high. Are you bleeding? I would be lead to think your stomach issues of vomiting etc are more to do with your stomach than your small bowel - like susan suggested - there are many things it could be like a hernia, ulcer, acid reflux, gastritis, but I'm also thinking possibly crohns as that can produce inflammation anywhere from the mouth to the anus so it can affect the whole of the digestive system. I would think they need to do an upper endoscopy (oesophagus, stomach, 1st part of small intestine) & at least a contrast mri scan on your small intestine. if there is no narrowing/inflammation found in your small intestine they can then do a camera pill endoscopy in your small intestine (they have to do mri first of camera pill may get stuck). also have you been tested for coeliac disease - another condition that can produce high calprotectin levels? it's so important to get an accurate diagnosis so you get the appropriate med to treat. reason being meds like asacol, pentasa are all formulated to release in different areas of intestines. the med i take (balsalazide) only releases in colon, so if I had a problem in small intestine - it would not treat it. Its important if you are still having symptoms to rule out all the other conditions so you can get treated accurately. hope this helps, & make sure you get plenty of rest - important with colitis or crohns. xx

Hi Kinks23,

I have just read your post not long after creating my own in reference to Indeterminate colitis. I am 21 and my symptoms sound identical to yours. My calprotectin levels are also around 1800 and as of today ive started on pentasa. I too have been told I should have my small bowel looked at. I have never came across anyone with colitis that is still indeterminate after several tests etc, so although it is a grim consition to have it is comforting to hear someone is experiencing exactly what I am and that im not going crazy!