Concerned about my symptoms and im not being taken seriously

Hello,

I am a 57 year old man, weight of 14 stone. Low alcohol intake and not on any blood thinners. Gallbladder removed 4 years ago and a TURP carried out on my prostate. All procedures relatively unremarkable. 2 x Urosepsis episodes.

i dont think I am being taken seriously by GP and hospital for what are very concerning symptoms to me, which are:

- Black stools that contain dark blood, and which are covered in thick dark jelly and blood

- After doing a No2 along with the above is am in intense pain across my  abdomen.

- Nausea

- Fatigue

- Urine doesn't look too good either.

So I was initially referred under the 28 day rule due to passing blood in my stool. They did a Colonoscopy and afterwards they told me told me there is no tumour in my bowel- to which I replied "OK, so where is the blood coming from?" He said its likely coming from higher up in the GI Tract such as small intestine, stomach, Oesophagus, Pancreas or Liver.

However, he then took me off the 28 day rule and told me that I will be seen in outpatients, with whom I am told have no availability for 9 months. I just believe that was wrong, because surely it should be to carry out ALL investigations until they get to a point where they have identified the cause. I believe the reason why he did this was to enable that team to hit any KPI 's that they are being measured against.

My symptoms are getting much worse now with black pebble stools and more and more blood clearly visible and are covered in thick dark jelly mixed with blood followd by heavy nausea. 

On Sunday night and Monday night I felt sick and in so much pain across my abdomen after doing a No 2 that I was too scared to go to sleep.

This really concerns me.. I get the feeling from my GP that she doesn't take me seriously - she just refers to her blood results where she tells me my  Haemoglobin levels are in range, but what concerns me is that she just doesn't have the experience to understand that at he time they took my bloods they may well have been within range but there are other factors she surely needs to push for, things like Normocytic Anaemia etc etc 

 I need to push them harder as I feel like I am a ticking time bomb with the drip, drip of blood and then bang and find myself in an emergency situation. Also, this is my life we are talking about here, and through any lack of urgency, it could well be that I end up in a stage 4 scenario. 

I welcome your thoughts and advice on how I might be able to push for them  to explore other areas within the upper GI Tract. You see, my mother died when I was 17 and she  was also told there was nothing wrong with her.  She died  6 months later of Cervical Cancer. So it's ingrained in me  to just not take what I am being told at face value.

Best regards 

 Darren

  • Hi Darren and thank you for your post.

    I am sorry to hear about your situation. I can appreciate the worry you have about how long you are waiting for your appointment. I can see how your mother’s illness has left a lasting impact on you. 

    I would urge you to see your doctor again if any of these symptoms worsen or change. Could you visit another GP  in the practice?  You can voice your concerns to the practice manager if you are dissatisfied with how your general practitioner has handled the matter. This link may help.

    If you have not already done this you might want to contact the hospital's  Patient Advisory Liaison Service (PALS)   to tell them how concerned you feel about your appointments.

    Some people may choose to go private (if they can afford this option) and can ask to be referred to a private GI specialist or they will try and see if they can make an appointment at a private hospital locally themselves, without a GP’s referral.

    Additionally, you can visit your local accident and emergency department for a current evaluation if you believe your symptoms are serious; especially overnight when other services are closed.

    I hope you find this information helpful. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards

    Tina

  • Thanks so much for your feedback Tina. Yes I actually spoke with my GP yesterday and she has assured me that she is going to escalate the appointment with the GI team. My issue was the fact that I was taken off the 28 day referral process simply after only one diagnostic procedure. Had he of kept me on it I would be getting seen A lot quicker.

    With the way I feel right now and with my symptoms increasing in severity I think I may well actually end up in A&E this evening as things do not feel right with so much more visible blood, intense nausea and pain in my right kidney area.

  • Hello and thank you for getting back to us,

    I am sorry to hear about your ongoing symptoms please, if you are worried about them do call the NHS 111 number so you can tell them what is happening and they will advise you what to do. 

    You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline