Any advice please?

[Minimaz]

So after having a laparoscopy done in October ruled out endometriosis I was sent for a scope. I was told after this that I had ulcerative colitis. My symptoms had been passing blood and mucus for around 5 weeks which eventually stopped about 2-3 weeks before the scope was eventually done. I was started on asacol and referred to gastro with appointment 3 months later. At appointment they advised that the scope had shown ulcerative proctitis but that “the biopsies are not at this moment and time diagnostic of inflammatory bowel disease” and they sent away a stool sample.

Today I got a letter through saying that following from this appointment in February the faecal calprotectin sample was back and was negative at >30. The letter goes on to state that they now need to be cautious before labelling me as definitively having ibd and therefore think a period of observation in clinic is probably the best course of action. It ends with “ it may be that we trial you off asacol at some point in the future if your symptoms improve but I think we simply need to keep an open mind”

I don’t understand. I haven’t had terrible symptoms e.g blood and mucous since October (scope was in November) but I still have urgency and diarrhoea after meals etc. I can’t go out for a meal with my husband and children without having to rush to the toilet and at times leave them eating to come home and use the toilet.

Has anyone had anything similar or can anyone give me their opinion please?

Thanks in advance

[willow24 Administrator]

Hi, it could be a small patch of disease that flared up and is in remission, or inflammation caused by infection. Any irritation or infection in the bowel will cause mucus (like the nose does with a cold) it is the bodies natural defence.

if the biopsies and faecal calprotectin are showing no inflammatory bowel disease its best you do come off the medications as they are strong and have serious side effects.

keep a dairy however of symptoms etc, and also foods you have eaten that may cause symptoms (just in case its an intolerance). If things start getting worse go straight back to GP. It can take years to get a proper diagnosis and many IBD sufferers are misdiagnosed with IBS.

sorry I cant be of more help x

[Minimaz in reply to willow24]

Thanks for replying. It just seems odd that after the scope was done I was told I had ulcerative colitis and would be started on medication and referred to gastro at my local hospital as scope was done on urgent list.

It seems no photos were taken during the scope to help current gastro. I absolutely agree that I shouldn’t be taking medication if I don’t actually have it which concerns me as I’ve been taking it for 5 months now. The gastro also said it’s possible ibuprofen was the cause as I had previously mentioned I thought that could be linked as when I had laparoscopy done my symptoms worsened and this linked into me taking ibuprofen for 3 days. I thought ibuprofen could cause a “flare” in ibd but not just cause the same symptoms?

I’ll ask all these question at my next appointment in June, just wondered if anyone had any ideas.

Thanks for taking the time to read and reply x

[willow24 Administrator in reply to Minimaz]

Ibuprofen can cause ulceration in people without IBD.

it may be the appearance of the bowel looked like ulcerative colitis but the biopsies identify and confirm the microscopic features - if there are no microscopic features then its not IBD. However no test is 100% certain.

Fingers crossed for you its not IBD and just an intolerance to ibuprofen

please keep us updated, and of course if you have any other questions or worries please ask x

[Minimaz in reply to willow24]

Ah, thank you that’s good to know, I had no idea that ibuprofen could do that if you didn’t have any underlying conditions. That would be the best outcome. Thanks very much for sharing your knowledge x