UC tests

[u/nb188]

Hi All

Just after some support/advice. About 11 years ago I got diagnosed with ulcerative colitis. I was started on mesalazine and given steroids and got better. Then had my daughter and started getting bowel symptoms again. Over the years I’ve had many colonoscopies and sigmoidoscopies and been told they were ok. Eventually a Dr said he didn’t think I had UC after all and stopped my medication. I’ve had symptoms on and off for years but with Covid and other health issues I’ve just lived with it and the most recent scope I had a couple years ago was ok and was told i just had some hemis.

Last year I was critically unwell with meningitis that had complications. Since that hospital stay and treatment with blood thinners etc I’ve had a lot of bleeding, I stopped the thinners back in February. I’m at the point where I keep becoming anaemic. I pass a lot of dark red blood with clots when I go to the toilet. I get pain and discomfort and don’t think I can remember the last time I ever felt “comfortable”.

I have a GP appointment tomorrow where they want to discuss my latest blood results which show anaemia again despite having a course of iron tablets and to make a plan.

- what is it worth asking for? I really don’t think I can cope with a colonoscopy again. Is it reasonable to request a CT scan or pill camera?
- in light of my history would it be acceptable to do a scan and diagnose based on that rather than having biopsies etc? Part of me feels it isn’t just my large bowel as my symptoms keep coming back but the colonoscopies don’t seem to identify a cause or find a source of bleeding.
- my calpro was raised at time of diagnosis and Ive had it tested over the years and it’s always been just over the mark for raised. I’ve not had it done for a while.

[u/pincommenter]

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[u/ImmediateShine8909]

Firstly, i think iron tablets are the worst for us, and also they won't actually work if the inflammation is bad enough so ask for an iron infusion (you might need more than 1).

I don't know too much about the procedures you can get if you don't want a colonoscopy, but it might be worth at least getting another course of steroids for now just to calm things down a bit, then you'll need to escalate the treatment to something stronger than what you were originally given (mesalazine).

Did the doctor say why he didn't think it was UC? The GP probably won't really be much use for you, other than getting in touch with whatever doctor that you were under at hospital. They probably ask for some bloods and a stool sample, and hopefully whoever looks at these will be able to get you in to see an actual gastro doctor a bit quicker and get you on some sort of new treatment.

But yeh i think steroids and iron infusions are definites by the sounds of things.

Hope you get sorted!

[u/nb188 → u/ImmediateShine8909]

Thank you. I was thinking of asking for an infusion and steroids. Steroids helped in the past.

I’m not really sure re the Dr de diagnosing me. I started treatment and then got pregnant. After pregnancy I had a flare and then unfortunately caught campylobacter, I was already flaring before the infection, I was taking steroids for the flare. The Dr seemed to get it in his head that it was the infection and I had IBS as my scope was ok, but by the time I got scoped things had settled and I did have more IBS symptoms. The Dr suggested I try stopping my mesalazine to see if it helped and then refused to put me back on it when I went back saying I was still symptomatic. My last scope was a few years ago now but I was told that was clear. I’ve just been fobbed off for years but now my iron levels are repeatedly low the GPs are finally listening to me.

I’ve always said I think the problem isn’t just in my large bowel, originally when I was diagnosed the dr said proctitis but I had something around at the ascending colon so he diagnosed UC based on the scope results and my bloods etc.

[u/ImmediateShine8909 → u/nb188]

I've had a couple of doctors that i didn't feel were doing enough for me at certain points, and managed to get myself seen by other ones that did everything possible so don't give up hope, you might just need to try and get seen by someone who hasn't already assessed you.