A bit confused...

[Amylmb]

Hi,

I have not been diagnosed with IBD but the doctor feels my symptoms are showing I could have it. I struggled with bleeding, bloating, lower left pain, awful fatigue, accidents, joint pain and mucus for about 3 months. Cal protection levels were over 2000. I had a small bowel mri that came back as normal. I am awaiting a colonoscopy but now my symptoms seem to have passed (although things still aren’t normal). This is the third time the hospital has taken so long to help out that my symptoms have passed, not sure how often I can stand it 😢.

My questions are... Does it mean that it’s not IBD as my mri was normal? Will a colonoscopy show anything if I’m feeling better? Should I follow this all up as it keeps getting missed? Will this go on forever as there seems no urgency by the doctors to diagnose anything, even when I literally cannot move from feeling so poorly?

Thank you x

[jakelayla]

Getting a diagnosis seems to take forever. From my first visit to my GP to getting a correct diagnosis took 6 months, and it takes an awful toll on a persons mental health. In hindsight I should have been a lot bolder, I seemed to get pushed from pillar to post. It is hard to stand up for yourself and push for medical attention and have to chase up results from tests when you feel so poorly and confused. Remember though the squeeky wheel gets the oil. A colonoscopy performed and biopsies taken, will produce an accurate diagnosis. Sending good luck and best wishes your way.

[Amylmb in reply to jakelayla]

Thank you!!! It’s been stressful and worrying, I’ll keep going. I think I just hoped this time they would listen a bit more x

[bantam12 in reply to Amylmb]

I kid you not it took 30 years for me to get a definite diagnosis! you need to stick at it and change Gastros if they are not taking you seriously, it should get easier once you have an IBD diagnose because you will have direct access to the help you need in the future, forget the GP as they aren't experienced in dealing with IBD's.

[Amylmb in reply to bantam12]

Eek, 30 years, that must have been horrid!! I am under gastro but they don’t seem to be moving at the speed I want them too. I know it’s because of COVID so it’s understandable but I think I’m fed up of not knowing now 😢

[saj12]

I'm no expert but bleeding red 'usually' indicates large bowel inflammation. My own MRI was also normal - (small intestine ok) but inflammation was clearly in the large during colonoscopy.

Its good that your symptoms are passing, though the colonoscopy should give more clarity.

[Amylmb in reply to saj12]

Thank you, that’s good to know that they won’t just rule it out because of MRI as I know something isn’t right. Thank you xxxx

[Valbaty54 in reply to Amylmb]

Your small bowel may well be fine but it sounds as though the large bowel is the problem. Even if your symptoms are less active at the time of the colonoscopy, they will be able to see evidence of inflammation. Bleeding really is a red flag so I'm surprised they haven't moved you up the queue!

[Amylmb in reply to Valbaty54]

Thanks for replying. That’s good to hear, I was worried that may leave me longer due to the mri results. The bleeding has stopped now, but was really quite heavy before which I explained. I hope they at least see some evidence of it with colonoscopy so I can get some sort of help. Thanks again cxx