Diagnosed with indeterminate colitis. Advice regarding symptoms please.

Posted , 6 users are following.

I have recently been diagnosed with indeterminate colitis following positive feacal calprotectin levels (1780) and a colonoscopy with biopsies. I was originally commenced on asacol but found it gave me quite severe headaches so have now been changed to pentasa which I have been taking for 3 weeks approximately. I have over the last few days completely lost my appetite and finding my visits to the bathroom are increasing. If I do eat, i get stomach ache within 30 minutes and have to go to the bathroom. I mentioned to my Specialist nurse yesterday the fact I am feeling like something is stuck in my stomach and sometimes if I burp I actually bring up any food that I last ate. Once I bent over to get something not long after eating and I vomited as if something had been pushed up. My nurse thinks there is maybe something going on with my small bowel which has not yet been looked into. I am due to see my specialist nurse in 2 days but just wondered whether anyone else had had these symptoms and if investigated then what was it. I am constantly fatigued and do not feel that the pentasa has really done much. I realise it is early days and reading some of the other posts I realise that actually mines not too bad. I am just having trouble seeing a brighter future as I havent felt well now since March.

0 likes, 9 replies

Report / Delete

9 Replies

  • Posted

    Sounds rather like you have a hiatus hernia, sounds like a endoscopy is required. Hope you soon feel better.
    Report / Delete Reply
  • Posted

    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.
    Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply
  • Posted

    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

    Report / Delete Reply
  • Posted

    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!

    Report / Delete Reply
    • Posted

      Hi looloo,

      I did have a colonoscopy and was unsedated so can remember it all clearly. I had 18 biopsies taken and it showed extensive inflammation on the ascending colon and also at the rectum. There wasn't any ulceration there just very red and inflamed. The biopsies confirmed and active colitis although they couldn't confirm Crohn's or Ulcerative. The pathology report said to rule out an infectious etiology so I sent samples away and all came back negative.

      Report / Delete Reply
    • Posted

      Hi Ben,

      I took myself off the pentasa as I didnt feel it was doing anything and I actually had a flare up whilst on it. It made me feel worse. I also can not take asacol. Since I have come off the pentasa my blood results have much improved. My CRP (inflammatory marker) has come down from 78 to 2 !! I took my self on holiday to Ibiza and felt the best I have done in ages. I have had an MRI today so need to wait 4 weeks for the results to see what is going on in my small bowel. I have an appointment with gastro on 11th october so will report back then.

      Report / Delete Reply
    • Posted

      Hi kinks,

      That's good to hear you're feeling better! I have been taking the pentasa for about a week now and it's totally settled everything. I'm almost 100 percent better id say and back to how I was before all this started. Let me know how the Mri results are

      Cheers,

      Ben

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up