Focal Active Colitis

[Mrsjulesflo]

So the biopsies of my colonoscopy have come back with Focal Active Colitis. I have not seen again the gastro consultant just yet as I am still down for a small bowel MRI, but I was wondering if anyone’s colonoscopy came back with this and how they treated it? I am still symptomatic with pain in right side of belly button and swollen area,llocalised back pain, every day, for about 6 months now.

[Shoeysmum]

Hi Mrsjulesflo

Did they not given you a prescription at the time they diagnosed Colitis? Perhaps you should phone your IBD nurses and request some.

When I was diagnosed with UC I was immediately given two lots of medication, Asacol tablets (messalazine) which I have to take every single day and a messalazine enema which I have to use daily whilst in a flare.

If you weren't given details as to how to contact the IBD nurses then your next course is to see your GP.

Good luck

[Mrsjulesflo in reply to Shoeysmum]

Hi! These were the results of the biopsy that came out yesterday 3 weeks after the colonoscopy. I believe it is not the same thing as ulcerative colitis. The report says it could be due to many possible things, like infection, bowel injury or start of IBD like Crohns more likely than UC. The diagnosis is not final yet. I am still down for an MRI of small bowel. I am 36 years old, never had proper bowel issues until October last year when I had a one full month of diarrhea. After which I was left with chronic pain.

What is your diagnosis?

[GoingthruTreacle in reply to Mrsjulesflo]

You sound in a similar position to my daughter (17yr old). She just had a Small Bowel MRI this morning.

Her colonoscopy in November reported Ileitis and Colitis. Like you said, this is not a proper UC or Crohns so in a bit of limbo waiting for formal diagnosis.

Her biopsies recently came back in a letter saying 'minimal focal active inflammation'. That letter did say that her GP could prescribe 'mesalazine 1g' if symptoms are troublesome in the meantime - so I gather from that it is still classed as IBD.

I wonder if you take your letter to GP with all of the results you have to date and say you are suffering. Maybe they can make their own judgement on the results and prescribe something like mesalazine? Have you done a Faecal Calprotectin test? My daughter's test came back very high so that has added weight to the need for action. GP's can order these tests too if your consultant didn't.

My daughter is now awaiting a formal diagnosis once the small Bowel MRI result been looked at. Frustratingly, she did have a perfectly timed appointment with consultant in a few weeks. But its been cancelled due to doctor's annual leave

My daughter hasn't personally started the mesalazine yet as she is also being investigated for other different conditions at the moment.

[Mrsjulesflo in reply to GoingthruTreacle]

Hi! My latest calprotectin was 94, that was a month ago. In 2015 it was 288 but I have not followed that up as I haven’t felt unwell. This time it started with a violent bout of diarrhea that lasted a month and calprotectin 90. Then colonoscopy found this mysterious type of focal colitis. Next week I was due to have the MRI however it was cancelled because of corona so my diagnosis will be exceptionally delayed. My overall symptoms are pain right side of belly button and also swollen same area. I don’t bleed now but I had some stool blood during the rough month. For about a month I have been taking the Alflorex probiotics which reduced the pain and have put back on the lost weight. I had lost about 10% of my weight which left me very weak as I was already quite slim. I am 36 btw and never really felt I had bowel issues until now. However I did have continuous slightly high inflammation markers in bloods for many years. IBD is so hard to diagnose, some people took at least 2 years. I hope your daughter finds a set answer soon. Do investigate as much as possible. And stay safe during these weird virus times.

[GoingthruTreacle in reply to Mrsjulesflo]

So sorry to hear your MRI been cancelled, I was so glad my daughter's just squeezed in this morning as I'm sure they will soon start cancelling things at our hospital too.

Everyone's experience of these problems seems so different. My daughter also didn't have any bowel issues until just over a year ago but her Calprotectin was 1430 and she was actually put through originally as a cancer risk as she also has high inflammation markers in all her blood tests. Thankfully, that was ruled out from biopsies.

Thing is , she does have persistent loose stool but doesn't have the pain or blood in stool that others seem to suffer, like yourself. Actually the first symptom she got was separate, it was of joint pain/inflammation and skin inflammation and she is now being tested for Autoimmune conditions by Rheumatology - I think it must all be connected in her her case.

I hope you don't have to wait too long for your MRI to be rearranged. Maybe you can try writing to the Gastro consultant and ask if they can prescribe something in the meantime. I have written to consultants before in between appointments and they do reply.

[Mrsjulesflo in reply to GoingthruTreacle]

Yes, seems like the IBD is different in everyone. I still hope though that it’s not IBD for me but it feels like it.

Contacting the consultant is a good idea, thank u for that, I actually haven’t considered it because they are so busy and hectic but I will give it a try. Your daughter could give Alflorex a try, it’s a type of probiotic bacteria similar to what the mother passes to child at birth. I found out about it on this forum, it might help with the loose stools. Wishing you all best.