worried

[Sarah1611]

Hi there, I’ve been struggling with constipation for a few years but recently every 2-3 weeks when I actually need to go I get shocking pains that feel like I’m in labour but am constipated for ages and then awful runs that have blood. I have a niggly right hand pain, feel full very quick and not eating a lot. I’m tiring easily and went to see my Gp last week due to continued blood in my stool, where he arranged for tests . Fit test came back at 300 and calprotectin 3012 with bloods being normal other than low ferritin. I’ve been referred on 2ww path and waiting for contact from the hospital. I’m 42 with 4 children and it’s so hard not to worry….im addicted to bloody google, which I know is not helping anything 🙈😂 and am just thinking the worst. Is there a chance that this could all be nothing? Or IBS opposed to IBD or bowel cancer?? I know no one really knows for sure and I have to wait until the colonoscopy but so wish I had a crystal ball right now x

[Brian1977]

Hi Sarah it's so hard when your not well and have kids I've 4 too and the last 3 years have been awful with your calprotecten level so high I would say it's ibd hopefully they get you on the right medication and you get sorted quickly

[Sarah1611]

thanks so much for the reply. I think at min I just want to hear anything other than the C word with the blood being there because that’s what you obviously think of first and with being put on the 2ww of course… I really did assume it would be IBS…could I have these results with that still? I don’t don’t know much about IBD but doesn’t sound overly pleasant…hoping I go for the colonoscopy and they send me away with a thick ear for wasting their time 😂

[Brian1977 in reply to Sarah1611]

Hahaha fingers crossed you do I'm not sure about the ibs but usually no bleeding and my calprotecten was 2500 and they said that is way to high normal should be 50. Its awful I was diagnosed 3 years ago I shrugged it off for weeks before seeking help. It has brought on inflammation in all my joints and spine I know have peripheral and axial spondyloarthritis it's been some journey. I'm just starting my final drug as I have tried everything with nothing if this fails I need to go for surgery and get my colon removed

[Runrig01 in reply to Brian1977]

I also have ankylosing spondylitis, I’ve had it since my 20s, but it was always blamed on my career as a trauma nurse. Finally diagnosed at 51, with fused SI joints and ribs, and consultant admitted it had taken many years to get to that. An A&E dr told me when I was 29, there were issues with my back, she said he probably picked up the sacroilitis at the time. I’ve been off my immunosuppressants for 9 weeks, due to foot surgery 7 weeks ago, but wound hasn’t healed. After being off them 6,weeks had 2 large rectal bleeds. Was sent to A&E to find my HB had dropped 15 points, indicating I’d lost 500mls of blood. Over the following 2 weeks whilst waiting for colonoscopy ive lost another 300ml. Was convinced being off meds had unmasked IBD, but apparently it’s diverticulitis haven just had my colonoscopy today. They say it’s rare for them to bleed. Just hoping they’re right, as it seems stopping methotrexate has triggered everything. Sorry to hear about you needing surgery, wishing you the best.

[Sarah1611]

you’ve got a lot on your plate, sounds like a rough few years. Fingers crossed you can get sorted that you’re and feeling better asap. Like I say, I don’t know an awful lot about IBD.

[rosco59 in reply to Sarah1611]

I’m sorry you are having to deal with all this worry. I would just say that I was diagnosed with ulcerative colitis in my late 50s with similar symptoms to you. Before diagnosis, I too frightened myself with reading too much google and was terrified it was cancer so finding out it was UC was a relief. I’ve had some bad times with it; it took a while to get it under control, but now I’m so much better. I’m active and live a normal life at the moment. However, it’s a lifelong illness that can flare up at anytime and there is no knowing when or what will cause that to happen. I think that eating well and keeping active definitely helps annd there are a lot of different drugs and treatments which can help get it back under control. I do really hope you get good news and wish you well.

[Sarah1611 in reply to rosco59]

Thank you for your reply, it’s really reassuring actually. I just feel like surely I should feel unwell if I have IBD but I’m generally fine other than when I need to go.. just super, super fatigued but I’m putting that down to the anaemia, and obviously worried sick at the moment. Glad to hear you’re well and fingers crossed it stays that way!

[rosco59]

It does sound very similar to how I felt, particularly the tiredness.

Thank you, keeping my fingers crossed for you too.

[Lo181]

how did your colonoscopy go ?

[Sarah1611]

hi, thanks for asking. All was clear so no cancer, which is obvs a huge relief and just waiting on biopsy’s. No obvious IBD seen either so no idea where we’ll go from here….ive been referred to gastro though but not sure if I’m just wasting peoples time x

[Sooty712 in reply to Sarah1611]

Hi hope all is well.Any update on what may have been causing such high calprotectin ? I'm also in a similar position calprotectin 1800 fit test high and can't eat most foods anymore or get lots of stomach noises with no pain except for joint pain and tiredness. Get lots of blood in the toilet if I eat trigger foods so stick to bland basic foods ie no dairy, gluten and only eat banana and occasional carrots.

Seeing gastro on the 1st of July.

Any advice would be appreciated please.