Hi I just wanted to drop a message in to say I'm going through a similar thing! I had lose stools extreme high calprotectin levels then I randomly went back to normal now I can't go toilet I have bleeding and mucus and im reliant on laxatives. I haven't been seen yet my Dr put my referral through as a non urgent due to theothe calprotectin levels dropping alot but said he couldn't ignore the fact the level was still high ( first one 1500 second one a few weeks later 654 and Jan this year was 145) due to Covid still waiting and my anxiety is through the roof and I'm fearing the worst as I've had these problems for 18 months on and off!

I hope you get answers and that it's not anything too serious

Hi Frankii

Please try not to worry although I know it's much easier to say that. I also have high anxiety and know how scary all this must be for you. I'm glad to hear you are being monitored a lot and they are doing stool samples to check your calprotectin levels. I was told by my GP that there was no point for a stool sample at the moment because they won't test it due to the risk of COVID in the stools. I am also undergoing some scary symptoms and like you have suffered for a while. On and off I've had rectal bleeding for the past two years. I was told I hàd external piles over two years ago when my DD was born because the pain from them put me in hospital not my labour pains. since lockdown my piles have gotten worse and are not responding to treatments. The Dr has done two lots of blood tests and I've had two examinations since March this year. They can still feel ànd see them . My worries come from losing weight back in March without trying to and that has completely freaked me out. I have also had a change in bowel habits and my stools have gotten thinner and looser this past week. I've had a lower abdomen scan which came back clear because I also suffered with pain in my abdomen and had high liver levels showing on my blood tests. I was convinced I had ovarian cancer or something wrong with my liver then but it was fine. I guess what I'm trying to say is please don't fear the worst. Often our minds can jump to the worst case scenario. I'm trying CBT to help my anxieties but I also know that until I get some answers about my current symptoms I too will worry about everything. 

Hi.... just thought i would check in and see how you are?

No news my end still waiting on referral chased it up and the hospital haven't even triaged it yet so could be months :cry:

Still on Movicol also now ducosate sodium which was working ok for a while but now struggling to go again and stools are now not even pencil thin they are that thin.

Gp won't change my referral to urgent one just says to keep taking the Movicol and if i get any abdominal pains to go to a&e :neutral::confused:

Very frustrated and fed up keep thinking well obviously something is wrong and the longer they leave me the worse it could be.

Hope you have better progress x

Hi 

I'm sorry to hear you are still struggling to get your referral and get things moving. My DR wouldnt change my referral either they have a tick list of symptoms for emergency referrals and I'm not ticking any of them. It's so frustrating isn't it. I've had a bit of luck tho and I got a phone call yesterday from the hospital and I have a telephone appointment with an gastroenterologist on Sunday. Not sure exactly what it will entail as it's all over the phone and seems odd because it won't involve any sort of examination but at least it's a start and it's the consultant calling. I'm guessing depending how the call goes will depend on the next steps and examinations etc. I also got the Dr to do a stool sample but I haven't heard anything back about that yet and that was a week ago it was sent off. I'm hoping no news is good news although I'm not entirely sure what the sample is looking for I think the Dr said IBD. My hair has started falling out now tho which I'm putting down to stress but it's freaking me out nonetheless and getting me down. Feel very deflated at the moment.

Hi

Im so sorry to hear your feeling so deflated and down its awful waiting isn't it?

If its any help whenever ive had stool and bloods done i only hear from the GP if it's abnormal they dont contact you if all is ok i hope that manages to reassure you a little?

That does seem odd however it's a step in the right direction being able to talk to a specialist i got told usually your first appointment with them is usually just talking through symptoms and them deciding what tests if any are needed so maybe they are just doing that for you over the phone?

I did find out that my appointment will be with the Colorectal Surgery department within hospital but they reassured me that it's just standard procedure and not actually meaning i'll need surgery.

I did think i would be seeing the gastroenterologist department like you are maybe its because all my symptoms are bowel related?

I think the hair loss will probably be stress i hope it stops for you soon and that sunday brings some productivity for you.

Hi 

Yes that does reassure me that they only contact you if they are abnormal thank you.

Yes I think it probably is for symptoms etc and then they decide from there what needs doing but like you said it's good to talk to a specialist. I must admit I started looking down the private route and even that starts with a consultation with a gastroenterologist also done either via video or phone call. That would cost £180 just for that appointment so I'm relieved I managed to get an appointment on the NHS with a consultant. I think the gastroenterologist can recommend what tests need doing if any like you said. I guess the colorectal surgeon will also do similar for you and do a consultation first? Did they give you any indication on wait times etc? 

Thank you I will let you know how Sunday goes. I'm writing everything down so I don't forget anything and I will write down what is said as well so I don't forget.

Hi

Glad i was able to make you feel a little bit more reassured!

Writing everything down is a good idea then youve got it all in front of you timelined and stuff so like you say you don't miss anything.

I'm so pleased for you that youve managed to at least be able to speak to someone and get the ball rolling.

I'm guessing thats what a colorectal surgeon will do for me but who knows? Just the receptionist at my GP's said not to worry.

No indication on wait times the woman who phoned up on my behalf was not best impressed but she said she will keep pushing for me. I've got to the point i'm less worried about what it could be and more just want answers so i can start any treatment before it becomes ( hopefully not) untreatable. Just a waiting game, although i had thought of looking at private also but thats really expensive isnt it £180 just for consultation!

Yes definitely let me know how sunday goes! it's my birthday that day so i have a goo feeling for you.

Hi,

I'm going through a similar thing. Hope all is well with you all? Did anyone find out what's wrong?

Simon

Not great, I’m having what looks like dark red slimy mucas with my stool. I’m beyond petrified. Everytime I see the dark mucas blood it sends me to a dark place. I need to do a fit test now.

Happy Birthday! Hope you are having a wonderful day!

Thought I would drop you a message to let you know how my telephone appointment with the gastroenterologist went. He was pleased I had listed and timelined all my symptoms and said in his opinion cancer is unlikely. He thinks the bleeding is from the piles but with the other symptoms of weight loss and a change in bowel movements he wants to rule anything suspicious out. He has ordered a colonoscopy and put it through as urgent so I get seen quickly. He told me the results from my stool sample as well which was completely normal although I have no idea what they were looking for with that. Have you had any more luck or heard anything further?

Hi! 

I've only just seen this but thankyou!

I'm so pleased for you that tests turned out normal! Fingers crossed for the colonoscopy as well.... good they are doing it quickly for you!

Yes slight progress on mine my appointment has been triaged which means theyve actually looked at it now so I may get an appointment soon hopefully....

Oh I'm so sorry to hear that....you always let your mind go to the worst place don't you 

Oh I'm so sorry to hear that....you always let your mind go to the worst place don't you