Calprotectin level 2000

[Sillysausage2]

Evening, looking for advice please, history of hemorrhoids, proctitis and colon polyp which was removed and inflammation for about 7 years. I have a flare up thats been going on for about two years. Just got on with it because of covid etc. A month ago I had sigmoidoscopy which showed proctitis and small hermorrhoids. I'm still suffering with not being able to go to the toilet, bloated. A fair amount of blood if I try to go a toilet. If I go for a wee I will pass wind and sometimes drip or wipe blood from my bottom. I did a stool sample, the doctor called today and said my Calproctin level was 2000 and normal is 100. He said he referred me to urgently to a gastro but he said even that could take 6 months. He asked if I was still losing blood I said yes I always am, I've not been to the toilet without losing blood for a couple of years if I'm honest. He said to me you could go A n E. I can't see what they will do in A&E and I don't want to waste their time. Thoughts anyone? Should I just try and go private? Thanks and sorry for the long post on a sunny Friday night!

[Mosside]

Hi sorry to hear this, it sound similar to me when I was first diagnosed back in November, my levels were over 2000 aswell, I ended up going private as the wait was so long and they did a colonoscopy and then gave me Pentasa enemas to use in the meantime, they settled some of the symptoms but still pass blood and the recent flexi sigmoidoscopy showed inflammation had spread to 60cm (was 20cm) so started oral medication which has made my symptoms much worse. I’m not taking anything for a week to let my body rest and then will try again. This probably isn’t much help but would the doc prescribe you anything in the meantime? Hope you feel better soon x

[Sillysausage2 in reply to Mosside]

Hi, Thanks for replying and sorry you're suffering too. What have you been diagnosed with? I was given prednisone enemas which I think just made it worse. I just carried on using them sporadically because I don't know if they are making it better or worse. The last two days I have eat minimal carbs and for dinner only a leafy tuna salad and had lemon and boiled water. I thought would help me pass a softer er poo. It has worked well, minimal blood in the toilet. But I'm starving so this isnt a long term solution. If I have another colonoscopy and they say its just proctitis ( which on google I have no idea how ive got that because I've done neither activity they suggest!) and hemmaroids. I think I'll go mad. I do wake up with a real burning in my stomach but put that down to acid. I wonder if that has anything to do with it..who knows..

[Mosside in reply to Sillysausage2]

I was also diagnosed with proctitis originally but it has spread now, proctitis is a form of ulcerative colitis just confined to the rectum and my understanding is a lot of people’s UC starts in the rectum, some are lucky and it doesn’t spread and some it spreads to whole of colon! Even with proctitis it can give nasty symptoms so best to try and get it under control. I have Pentasa enemas (mesalazine) so not the steroid form and they have managed to make the lower inflammation mild but unfortunately it’s spread past where the enemas can reach so it’s oral meds aswell for me, just hoping I find one that suits me soon 🤞 from what others have said I’m not sure what A&E will do for you other than give you painkillers and refer you!?

[Valbaty54]

If you've been bleeding for a couple of years and your inflammation level is high, you do need to do get it under control to avoid damage to your bowel. What meds are you on? Have you got an IBD nurse or helpline? A&E is an option at the hospital where your consultant is, and that could be the quickest way to be seen soon. If your GP suggested it, then it's a good plan.