Capsule Endoscopy Results UK

[dannid]

Can anyone in the UK tell me if the following is usual practice with regards to receiving test results?? I had a capsule endoscopy on 30/12/13 and was told at the appt that the results should take approx 2 weeks to come back. The nurse told me to contact my consultant (at a different hosp to what the procedure was preformed at) if I hadn't heard anything after 2 weeks. Today I called my consultant and spoke with his secretary (who is always very rude to me for no apparent reason) and asked for the results. She put me on hold and then came back and said that I have an appt on 11/02/14 and the results would be given then. I am wrong to think that it seems like a very long time to wait if the results are there already and they could tell me over the phone. I have been having symptoms now for over a year and feel very worn out with it all...I know 3 weeks might not seem long to them but to me when I am suffering on a daily basis it feels like an eternity. I am now also worrying so much that it is something bad that they don't want to discuss over the phone :-( anyone know if this is just the normal way results would be given? All my other test results have either been given via my GP or at the test itself.

 

[valleysangel92]

Unfortunately, this is the way things seem to be with the nhs .

I have not had a capsule endoscopy, but I had an MRI scan in August 2012 and didn't get the results until November 2012 after chasing them all the way round the mulberry Bush.

It's common for consultants to want to give the results in person, and I can understand this as sometimes it's difficult news to give or things need a lot of explination, but I think a certain number of appointments should be held for people who have had tests so they can get the results as soon as possible.

It is a long time to wait and I really can appreciate how you feel. I assumed my mri was fine as I had been told I'd be told within a week if it wasn't... I went off to uni, got very sick and received a letter saying I had to have a scope.. I wasn't a happy bunny and I can imagine that you aren't either.


So the answer is yes, unfortunately, this does seem to be the norm here. Waiting list dictate how long it is between appointments so that does vary, but at generally it's about 6-12 week's. *Hugs* I know it's hard but try not to get stressed out. You can get through this.

 

[dannid]

Thanks valleysangel...gosh that is a terribly long wait for you!! I think what makes it worse is that they have changed the date of the consultants appt 3 times now with no explanation! Grrr! All my other tests have come back clear (other than my raised faecal calprotectin) so am really hoping that this uncovers what it is as I am still getting very sick every few weeks and have constant trouble with my tummy now. I also don't think it helps that the secretary is always so rude to me...to the point I have even thought about putting in a complaint against her.

 

[Axelfl3333]

It's part of the requirements for them to be rude ignorant gits,but here,s on consolation if there was anything really major it would be a whole lot quicker

 

[dannid]

I get that feeling too Axelfl3333!! I think it should be a requirement for the secretary to have had a similar illness themselves...maybe then they would have a bit more empathy towards patients!!

 

[highlandsrock]

Don't get too concerned about not being able to get your results over the phone or via your GP. I've found it really depends on what test you've had as to whether they are prepared to tell you the results outside of an appointment. On a test that needs expert interpretation a few weeks wait is quite normal whether they've found anything or not. A capsule endoscopy will need someone to watch the video and note any findings. Being a specialist test it may not be appropriate for the results to be given to you my your GP who is not a gastro specialist.

I know how frustrating and worrying it can be, especially when you are still waiting for a definitive diagnosis. I was in a similar situation before Christmas when I had had a bone marrow biopsy and heard nothing. Over the last couple of years I've built up a good relationship with my consultant so I emailed her and asked if everything was OK. She responded that the results were complex, and it would be best to discuss them at the next appointment, but there was nothing to lose any sleep over. If you can build that sort of relationship it will pay dividends.

 

[dannid]

Thanks highlandsrock. My consultant is great and always very helpful when I get to see him. His secretary not so much. Part of me is reassured that it isn't anything to worry about as they are happy to let me wait but another part of me is worried that they want to discuss it in person. Either way tho I just want to find out what is wrong and hopefully start dealing with it so that I feel better and can get back to normal life! I think if I had some kind of diagnosis I could begin to accept it...but I just feel like I'm stuck in limbo atm.

 

[Niks]

My daughter had her pillcam at the end of November, her next appointment was scheduled for 25 March! After a lot of e-mailing and calling, she has been promised that it will be in February.

Still far too long! Good luck, I hope you hear back very soon xx

 

[dannid]

Looks like I'm not the only one then Niks. What a long wait for her tho...that's terrible :-( I hope they keep the promise and she gets to see them in Feb! My appt has been cancelled 3times now...no explanation why tho!!

 

[highlandsrock]

I know what you mean about feeling in limbo before getting a proper diagnosis. I reckon it is probably the lowest point, especially with an "invisible" disease such as Crohn's, as you don't have a name for what is wrong with you and people think you're making it up or it's all in your mind.

Once you can get onto the right medications and at the right levels things should get a lot better and you can get your life back.

 

[VioletCrohn]

I had a colonoscopy on the 17th of December and still haven't heard back they haven't even booked me an appointment to see my consultant. I have called the secretary twice both times she has said I can't find your notes I'll reprint them and put them on the consultants desk. She won't tell me results over the phone and has told me she is way behind it's hard enough for her to keep up usually but she had two weeks holiday before Christmas and has a back up of things to do on her desk. A bit unprofessional for a secretary to complain to a patient and very frustrating for me...

 

[dannid]

Exactly Highlandsrock! I think once I can find out what's wrong and begin to accept and deal with that I will feel a lot less worried. At the moment it is so awkward as I keep having to take time off work and let people down and I can't even give them a proper explanation why!
That is very unprofessional VioletCrohn...I understand that they are busy (I work in the NHS myself) but there is a big difference between being busy and just plain unhelpful...making you wait that long without a follow up appt is just unacceptable!

 

[SweetObsolete]

I had my pillcam done a few weeks ago and first they told me it would take a week to get the results, then they said two weeks, then they said a month. So... they kept saying longer and longer lol. Someone has to sit down and watch all of the pictures, that's why it takes so long. I don't even know if I'll hear anything until my appointment on February 4th. I'm currently undiagnosed too, so I know how frustrating it can be! Good luck and I hope you get that much needed diagnosis soon.

 

[Nipeli]

OMGosh, my daughter will do the cam capsule next week Tuesday, at the GI's office. We haven't asked how long it will take, but everything so far here in Hawaii hasn't taken longer than 3 weeks. As we chose Dr's that are part of a hospital group, they have access to all files, it's pretty cool, as when she goes to OB GYN, primary care, GI or even ER they all have files easily accessible. since our GIDoes all procedures himself, we should have results fast. I HOPE!

 

[edcolumbiaMD]

look to the blood for testing if you see nothing -- IBD EXPANDED PANEL --
checks several antibodies
AMCA
ACCA
ASCA
ALCA
they all mean something....... and foods are under each as well yeasts
not sure if they have it in the UK but get one....

 

[niccj]

Hi dannid have you had your results yet? I had ny pill cam beginning of march and have an appointment with the consultant next week but the results aren't back yet and the secretary doubts they will be as they received results from a test done in November last Friday so they are well behind - also different hospital I visit to the one I had the procedure in. The only thing really that has come back positive/abnormal for me was the calprotectin too so curious as to your results.

 

[dannid]

Hi niccj. Yes my test was done at different hosp too...not Bristol by any chance?! I had them back a month or so ago...it didn't pick anything up :-( I have since had a CT scan tho and have just had the results back from that. The consultant wrote to me to say that I have a 5cm intussuception in my jejunum. Apparently as it is intermittent they won't treat it tho?!? The consultant has jut suggested if my symptoms et worse or more prolonged that I attend a&e. Other than that he has not given me any more answers or even said if I will have another appt with him at all?!? At a bit of a loss really. On a plus note tho I have now not had an episode for 2 months so am really hoping it stays at bay for a bit. :-/

 

[niccj]

Good news but not then! No answers really. Its so deflating isn't it knowing that you're not right but everything saying there's nothing wrong. Well at least they have picked up on something with you. They say it sometimes takes years to diagnose don't they. No mine was done at liverpool hospital. Absolutely hopeless. They need some serious time management training! Well I'm glad you've not had an episode for a while, fingers crossed it continues. Take care.

 

[dannid]

Yep very frustrating. It doesn't seem to be very common so am struggling to find much info on it all. If it's any consolation at all Bristol are just as bad...had my camera pill done at end of dec and when I met with consultant in feb they still didn't have results back despite the (horrible) secretary telling me weeks before that they were there but couldn't be discussed over the phone. I still seem to be getting symptoms daily but they (touch wood) don't seem to be getting to the point that I end up in a full on episode. The only thing I have changed is cut out bran flakes/wholemeal bread and started eating a banana every day instead. Not sure if it is just coincidence tho?? I hope all goes well when u get ur results. X

 

[ezgoindude]

Hello everyone!

Out of curiosity dannid what was you calprotectin level? Mine had returned as 153 when I was feeling my worst, and several dozen tests and months later I'm still showing up like yourself, normal across the board.

Did you receive your pill cam results back? I've had scopes and biopsies come back healthy and normal.... really the only two places left are my gallbladder and small intestine. My duodenum was flat by appearance yet healthy according to biopsy. Doctor is trying to push I have food allergies....ugh.

6 months getting no where is exhausting!

 

[dannid]

I don't actually know ezgoindude?! The consultant didn't actually tell me but he did say that when the results came back he thought there had been a mistake in the lab as they were so high!! He re-ran the test just in case and they came back the same again. They have now diagnosed intermittent intussusception in my jujenum from a CT scan. All the other tests I have had came back clear. I am now waiting for my next consultant appt to discuss these results in person with the consultant. Is all such a slow process though.

 

[niccj]

Hi ezgoindude, my calprotectin results were 290+ x 2 and 307 I think was the highest. Although I didn't feel as bad when I had given these samples as I have done. I see my consultant this week but I know my pill cam hasn't even been looked at yet. Getting very angry as I was told 2-4 weeks for results to be back. If they havent got the capacity to view the results they shouldn't do the test until they can view them within a more reasonable timescale.

 

[ezgoindude]

Good evening ladies!

Currently on lunch at work.... but I cannot agree more that they take their sweet a$$ time. I sometimes feel they're just waiting until all the symptoms pour over and they can blatantly say "ok he is not medically ok"..... but anyways...

Dannid I looked into the intussusception thing and it could very likely be a huge cause of your digestive discomfort / pain. From what I can see on various images you could have mucous/bateria stuck in those folds (depending on how severe) and they're having a go with your food?

My next push would be pill cam or some kind of scan i consider since theres all of my intestine and my gallbladder/pancreas hanging around the spots they haven't seen....

niccj I would also be very interested in what they have to say about your pill test if you be kind enough to tell us. For my insurance it would be extremely expensive and I would it would be awesome to get personal insight on what they tell you the pictures show.

Yea my doctor based upon my endoscopy/colonoscopy couldn't agree/confirm for crohns or colitis, as the only visual damage was my duodenum and even then the biopsy comes back as normal....

I argued over what the calprotectin would mean and he agrees that in some cases it shows IBD but many cases it could be various infections, polyps/tumors, diverticulitis, ulcers, food intolerances, liver problems and some chemical agents/drugs in long term use.

Let me know how the results are goin! my blood tests haven't gotten back yet, its after that I'm pushing for either CT/MRE/pillcam/HIDA something to get a precise scope.