still having symptoms

[Longboots7979]

Hi I posted a while ago about my son who is 23 had a fit positive test off 200 and loose bowel movements up to 6 times a day.He had a colonoscopy, it was clear, biopsies was clear too so they discharged him.

He is still having symptoms and lots of blood , he also keeps getting really big ulcers in his mouth and spots all over his body.

I have tried to get intouch with the colorecal team but we can never get through.

I'm not sure what is the best action to take now, im thinking maybe A&E as no one seems to be able to help.

doctors appointments are 2 weeks away.

[GCCA-Survivor Administrator]

Hi again Longboots7979,

Well, you’ve gotten some answers and direction, but it’s still leaving you with speculation. I can’t believe it wasn’t an immediate plan to get to the bottom of what’s causing the bleeding. So, you do have a next doctor appointment in 2 weeks? Is A&E a healthcare system or organization? Is that a private approach to this issue?

Is there some kind of patient centered group you can contact? A patient navigator? Perhaps sharing what healthcare system you are dealing with can help gain some kind of insight of what can be done. People may know some groups that can help deal with what you are experiencing.

Tom

[Longboots7979 Caregiver in reply to GCCA-Survivor]

Thank you Tom, I've tried calling a private hospital but they won't see him as he's already been seen through the NHS.

I've tried calling the original colorectal team he was under but it just goes to a full answer service that won't take any messages.

I've called his gp but there's no appointments until 2 weeks time.

I think the only option now is to go to the accident and emergency department at the hospital

Hes been losing alot of blood and mucus lately and said he feels totally wiped out.

last night he had a major panic attack about it that he's bleeding and he doesn't know where its coming from.

[GCCA-Survivor Administrator in reply to Longboots7979]

I hate you’re having this problem. I would push the issue and go to A&E. There are other tests to help determine what’s going on. They should have automatically been ordered. You need a definitive answer and get him on a path to being well👍❤️

[Dance22 in reply to Longboots7979]

Hi there it’s an awful situation for you, having read your post you’ve done all you can to contact the the correct team, if this was my son I’d go to AE and just maybe they will contact the colorectal nurse, don’t be put off going your son and yourself need it sorting soon, all the best for you.

[Nuttyrider]

Either book a same day urgent care care appointment with your gp. But be quick our practice they fill quickly. Or better still still I'd go to a&e even if your son has to lay it on a bit thick to get seen sooner. I assume he's had basic blood test and and a CEA blood test for bowel cancer.

May I ask how old is your son. If over 18 he needs to be pushing for his medical care as well. If under I'd be shouting from the roof tops for answers.

[Longboots7979 Caregiver in reply to Nuttyrider]

Hi, thanks for your reply.Hes had a urgent colonoscopy which came back clear, so they put him on a pathway that he could see a consultant.

we have been trying to get in touch for 2 weeks but it just goes to a voice mail that doesn't take any messages

We went to A&E waited 7 hours and still no joy, the doctor just said he is in the pathway so get into intouch with them.

I went back to the hospital the next day to colorectal department they gave us more numbers but there mail boxes are full too.

Went back to the GP he said get incontact with PALS at the hospital, went to see them but on there office door it had a notice up They are off due to sickness.

have emailed them.

It's like brick walls are everywhere, so frustrating.

[Longboots7979 Caregiver in reply to Longboots7979]

forgot to add my sons 23

[GCCA-Survivor Administrator in reply to Longboots7979]

WHOA!!!!! I am shocked at the way you are being treated. Website as Nuttyrider is giving some good advice. This is more than unacceptable. Find an office and go in person. Do whatever it takes. I hate to say this, but esclating the symptoms may be an advantageous approach. Along with the continued bleeding symptom, throw in some abdominal paid. That may get the attention needed and some urgency.

nhs.uk/nhs-services/hospita...

Please keep us informed as this plays out. It's very eye-opening.

[Nuttyrider in reply to Longboots7979]

Oh dear you really couldn't right it. I'd email and ring PALS. Just keep shouting. I'm assuming it's for a child or you adult. Either way definitely push PALS. I'd also ring the team of cancer support groups for advice.

Sadly our NHS really is at breaking point. But I've just been using PALS to sort out an urgent review with my spinal team after major back surgery from tumour removal. Should have been early December. They now promise me one in May!!!