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Capsule endoscopy, how to request one?

Posted , 3 users are following.

lady67208
lady67208

My only symptoms have been dark red blood mixed in with stools and blood tests reveal low iron. I have thus been referred for (2 week fast track) colonoscopy and they found nothing. I have had about 5 blood tests checking for iron dificiency, H pylori infection, celiac disease, kidney and abdominal scan - all revealing nothing abnormal. 

The bleeding has been consistent with every bowel movement for 8 months. 

What is the most effective way of requesting a capsule endoscopy, because I am beginning to feel like a lab-rat. I have refused the upper GI endoscopy because it is invasive and I have no upper GI related symptoms.

With the British NHS system, you have no opportunity to discuss the follow up reccommendation with the consultant after a colonoscopy, only the nurse who could not answer my queries.

My GP fails to follow up any of my blood or biopsy tests without my repeated prompting and I get no specialist advice about diagnosis or next steps.

I'm now in limbo with the same symptoms trying to be referred for a capsule biopsy.

Has anyone got any advice on how this test can be obtained - ie how and when will a Consultant offer it, and on what grounds?

Specifically under the British NHS

I await a decision from one of the chain of consultants involved in my care/convoluted referral process. I'd like to prepare with any patient insight anyone can offer me.

0 likes, 9 replies

9 Replies

  • FA54321
    FA54321 lady67208

    Posted

    Hi, a capsule won't give you a biopsy. They just take images on the way down. If you've already had an endoscopy, you shouldn't really need a capsule endoscopy. What I would do though, is go in and ask your doctor for some proper advice instead of letting him be evasive. You need answers and he doesn't seem to be giving you any.  Ask to be referred to a specialist if you are not getting the information you need from him. 

    Hope all goes well.

    • lady67208
      lady67208 FA54321

      Posted

      Thanks Fiona,

      yes sorry 'biopsy; was a typo - I meant capsule endoscopy. I have had a colonoscopy but don't want the upper endoscopy because every procedure carries risks and I have no symptoms to warrant it.

      I do hope to get to speak to a specialist to get some sound advice, I just wanted to be prepared because I don't know on what grounds they grant a capsule - yet all the other tests aren't showing up anything.

      My GP has said today that she has written requesting that I have an appointment with a specialist to discuss the next steps - so I hope now for some progress.

      Thanks

  • FA54321
    FA54321 lady67208

    Posted

    Are you eating gluten/wheat? You need to eat gluten/wheat before an endoscopy if being tested for coeliacs,(and even just for the blood test)  plus, even though your blood test came back negative for coeliac disease doesn't mean you don't have it as you can get false negative results with blood testing.   If it's something else other than coeliac disease, you will probably need an upper endoscopy in any case, as they may want to take biopsies, and they will need a good look around, and for all I've heard about these capsules, in theory, I've not heard of anyone having one.  All procedures carry risks, that is true, but you'd be well advised to follow the advice of your specialist when you get to see him/her as they know best.  I hope you get to see someone soon as 8 months is a long time to be bleeding, it's no wonder you are anaemic.  Let us know how you get on.
    • lady67208
      lady67208 FA54321

      Posted

      Yes Fiona I eat breat etc regularly and was really relieved that I wont have to give it up - the blood test would have detected it because I would have had wheat every day leading up. 

      I wish I could take a specialists advice - but at the end of the day the only justification I have had for an upper endo is that it's procedure - no one has been able to explain which of my symptoms warrant it. 

      Today I spoke to a specialist who has referred me for a face to face chat with a consultant who also offers capsules - but I don't know how soon that will happen.

      I don't know of anyone having the capsule either - hence this thread was an attempt to find out. Only recently someone here had said that they were referred for a capsule after a colonoscopy....she had created a thread re. how reluctant she was to have the colonsoscopy and then told everyone it was fine and she is now to have the capsule. 

      Everyone's situation is different so I was just trying to get some background on what determines the next steps.....other than just 'procedure'

    • lady67208
      lady67208 FA54321

      Posted

      I know it may seem like I think I know better than the specialists - but it really is more a matter of not consenting to unnecessary risk. 

      If I had any of the common complaints that lead to an upper GI investigation, I would have it - but the risk of perforation, pain, infection etc is real - I have read some awful accounts of other's experiences here so I'm not prepared to go through that lightly.

      If the blood was from anywhere above the stomach it would be black (passing through bile), instead it is dark red. The stool is a normal colour and form - just streaked amongst it (not bright and on surface like hem's either).

      If a capsule identifies anything, invasive procedures to follow would be both targeted and necessary, and at that point it would be worthwhile.

      Had not for the iron difficiency and continued bleeding, I would ignore all this - because I have no other symptoms.

      I appreciate you taking the time to consider my plight - I will update as things progress, but I reckon I'm probably in for a long wait (Jr Dr strike etc has set everything back)

  • FA54321
    FA54321 lady67208

    Posted

    I understand your concerns and it is of course your choice. I would add one thing though, and that is, blood tests are not as reliable at diagnosing coeliacs as and endoscopy with biopsies and also, not all coeliacs display symptoms, they are oddly, the unlucky ones, as the damage is being done to their guts, but outwardly, they don't know when they have been contaminated with gluten. 

    I hope that you get some answers from your consultant, and that you get the capsule test soon, and don't have to wait too long. I also hope you don't need the upper endoscopy done, but if you do, try not to stress too much about it as, a lot of these are done on a daily basis, and you tend to only hear of the ones that have horror stories to report. In actual fact, I've had 4 done in the past. 

    Good of luck and I hope all goes well for you smile

     

    • lady67208
      lady67208 FA54321

      Posted

      Thanks Fiona - I will keep what you say about Coeliac's in mind though I really don't want to give up my bread! I have recently been reading about it and you are right, it is not to be taken lightly and best detected early, due to potential damage.

      True that most people only post the negatives - It nearly caused me to whimp out of the colonoscopy. 

      We'll see what happens, your encouragement is very welcome though smile 

       

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