Has anyone had a capsule endoscopy?: I’ve had a... - IBS Network

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Has anyone had a capsule endoscopy?

rustydog profile image
29 Replies

I’ve had a gastroscope and a colonoscopy now the gastroenterologist has suggested a capsule endoscopy just to check my small intestines.

I nervous about swallowing such a large looking pill especially as I normally crush pills if I can. I also hate the thought of taking any kind of prep again, I found the colonoscopy ok but the prep was a whole other story!!

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29 Replies
Viklou profile image
Viklou

Just had one but didn't take any prep with it, just fasted for 12 hours prior. They gave me a latency pill the week before then I had the real one. I had no issues swallowing either. Just waiting for results now

rustydog profile image
rustydog in reply toViklou

That is good to know, thank you. Hope you get the results back soon.

Boxroad profile image
Boxroad

I believe it’s the best test you can have, it’s not given to often as it’s a very time consuming test because someone has to sit and watch all the pictures it takes on it passes through.

rustydog profile image
rustydog in reply toBoxroad

Thank you.

Viklou profile image
Viklou in reply toBoxroad

Yes that's quite true. At the hospital I go too they only do 3 a week and there isn't a long wait for it relatively speaking. Ours will only do it if they strongly suspect small bowel disease or diagnosed with one. Personally I don't think they like looking through hours of pictures of someone's insides.

Gardenlover2020 profile image
Gardenlover2020

I’ve thought about asking for one as I’m IBS - constipated & had a colonoscopy a year ago which showed nothing , but I doubt I’d get it on the NHS , are you having yours done privately or on the NHS ?

rustydog profile image
rustydog in reply toGardenlover2020

I saw the gastroenterologist last week but paid privately for the consultation. I can’t afford the procedure privately so she has referred me over to the NHS. She did say it will be a long wait though.

Gardenlover2020 profile image
Gardenlover2020 in reply torustydog

That’s good she’s referred you through the NHS , I’ve looked into it & it’s about £1500 , I know you’ve got a wait but at least it won’t cost you & it may not be too long 🤞

rustydog profile image
rustydog in reply toGardenlover2020

She did say it would be about a year unfortunately but I couldn’t afford it privately so I’ll have to wait lol!

Gardenlover2020 profile image
Gardenlover2020 in reply torustydog

At least you’re going to get it done eventually & that’s the most important thing x

RemonLUKA profile image
RemonLUKA

Could you please tell me what are you symptoms? as I have done 4 endoscopy and 3 colonoscopy on 1 year and still suffering from a severe upper abdomen pain. Thank you

rustydog profile image
rustydog in reply toRemonLUKA

I get bloating, gas, acid, excessive burping, excessive gurgling and growling in my stomach and bowel area. I get pain from awful bloating and lots of gas. I am IBS mixed so am different day to day. I’ve had a colonoscopy, gastroscope and ct scan. I believe that only a gastroenterologist can refer you. The gastroenterologist who recommended the capsule endoscopy was one that I had to privately to see. No NHS gastroenterologist has ever mentioned it!

RemonLUKA profile image
RemonLUKA in reply torustydog

I told my consultant about that capsule , he said no I don't need as I don't have a bleeding. I can't pay unfortunately 2000 Pounds for it in a private hospital.

rustydog profile image
rustydog in reply toRemonLUKA

I paid £170 to see the gastroenterologist privately. She suggested the capsule endoscopy then said she will put me on the NHS waiting list. I couldn’t afford it privately but could just about afford the consultation. Could you do it that way maybe?

rustydog profile image
rustydog in reply torustydog

I should add that I won’t be skipping the NHS waiting list, she did say that it could be up to a year!

RemonLUKA profile image
RemonLUKA in reply torustydog

OMG

RemonLUKA profile image
RemonLUKA in reply torustydog

good idea . thank you . but I am afraid he will not refer me to do it.

HowNowWhatNow profile image
HowNowWhatNow in reply torustydog

I have very similar symptoms to you but without the IBS diagnosis. I am finding gastro referrals - and I am in the private system because I was lucky enough to have insurance when all these problems began - take months and months even without waiting lists.

I can’t decide what the problem is - not enough kit / not enough GI specialists / too many who do both private and NHS work so you have to wait longer to see them / an unwillingness to ask for more than one test at a time.

If you have a possible breast (cancer) problem and are in the right place, you can have a mammogram, U/S and biopsy on the same day. Seems to be about 50 years in advance of GI diagnosis.

rustydog profile image
rustydog in reply toHowNowWhatNow

Isn’t just beyond frustrating. I personally think half the problem is getting the GPS to take the symptoms seriously and getting a referral. My mother in law was told for a whole year (by her GP) that she had IBS when it was something else, she literally had to beg to see a consultant! The gastroenterologist departments do seem overwhelmed though. I had to wait over a year to see an NHS gastro!

HowNowWhatNow profile image
HowNowWhatNow in reply torustydog

I wonder whether NHS managers / gastro doctors look at or are graded by diagnosis times. Are they even remotely aware of how long it takes to get from A to B?

My GI doctor never recommends blood tests, rarely recommends stool tests.

There should be a minimum package of bloods and stools done for every GI patient at the beginning of a referral.

Plus the 48 hour acid test. Plus a maximum time from referral to a serious (life threatening) diagnosis.

If a GI doctor is making a serious diagnosis a year after the initial referral we (the U.K.) are not running a health service, we are running a waiting room service.

HowNowWhatNow profile image
HowNowWhatNow in reply torustydog

It’s more than infuriating. What was your mother in law’s eventual diagnosis?

rustydog profile image
rustydog in reply toHowNowWhatNow

Sadly it was a Neuroendocrine small intestinal tumour but that’s really quite a rare condition.

HowNowWhatNow profile image
HowNowWhatNow in reply torustydog

If they’d got it sooner, am guessing the prognosis would have been better?

Watch and wait is no substitute for careful, proactive treatment.

rustydog profile image
rustydog in reply toHowNowWhatNow

I definitely believe she would be alive today, albeit living with cancer, if her GP had sent her for tests as soon as she presented with symptoms. It’s why I push at doctors now and if they don’t listen then I will go see consultants privately, even though I can’t really afford it tbh.

RemonLUKA profile image
RemonLUKA

could you please tell me can my GP refer me to do that capsule endoscopy?

Viklou profile image
Viklou in reply toRemonLUKA

No as GP's aren't specialists to examine your bowels from a pill cam and the information goes back to the referring doctor. A GP may refer you for an endoscopy or Colonoscopy but usually refer you to a Gastroenterologist based on those or direct if bloods and stool samples show inflammation

rustydog profile image
rustydog

Hopefully he will, especially if you find a private consultant who also practises at your local NHS hospital 🤞

Ivan1 profile image
Ivan1

Hi yes I’ve swallowed the capsule and was found to have small ulcers It’s no problem at all but I do find it easy to swallow pills. Don’t worry it’s a marvellous thing and painless good luck

rustydog profile image
rustydog in reply toIvan1

Thank you.

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