How much use is a capsule endoscopy?

[UnXmas]

One of my doctors, one who I often don't agree with, wants me to have a capsule endoscopy. She wants to do it to try to find the reason why I can consume so many calories and fail to gain weight. Actually, I think she is looking for confirmation that there is no physical reason for my troubles gaining weight - she thinks I have an eating disorder. So she is looking to rule things out, rather than expecting to find anything significant.

I do have long-standing phobias about food, worrying that it will make me ill (and usually these worries are fully justified). But I also know that I really can consume what should be enough for me to gain weight, and lose it instead. The trouble I have gaining weight is as much a mystery to me as it is to her.

I don't want to do this test. I've recently had an upper endoscopy and an MRI of the small bowel with contrast. They found active inflammation but not enough to account for my apparent failure to digest and absorb food properly. I no longer have a colon, so there's nothing to test there. I assume a capsule endoscopy requires a day of fasting - is this correct? And it will mean trips to hospital, which is quite far, probably waiting around, etc. I've spent the majority of the last three months in hospital. It doesn't seem worth doing a test when both my doctor and I expect it to produce no information that we don't already know.

It feels odd when I see posts here with people having to push their doctors for tests, to turn one down, but I'm so exhausted of hospitals. How much does a capsule endoscopy show that an endoscopy and MRI do not? Is it likely to show something that I don't yet know about?

Plus I just read the Wiki entry on this site for the pill cam, and it says "Not suitable for people with gastroparesis," which I have. But my doctor knows this, she's also ordered me a gastric emptying study. Why isn't it suitable? I asked whether it would be ok with a stoma, and was told it would be fine, I didn't think to ask about it being ok with my stomach emptying so slowly.

 

[Cat-a-Tonic]

My understanding is that the preparation for the pill cam is not set in stone and and depends on the doctor/hospital's preference. Some doctors will require fasting only, whereas others will require 1/2 or even full colonoscopy prep. When I had my pill cam, I had to do 1/2 prep. They explained it to me like this - they don't really need the colon to be super cleaned out since they can see that with the scope, they just need the small intestine to be mostly cleaned out since that's what the pill cam's main purpose is to see. So that was why they had me do 1/2 the usual amount. It still wasn't pleasant, I definitely would have rather just fasted. Since you have no colon, you may be able to get away with just fasting, rather than having to drink any laxative. But that decision is usually made by the doctor or hospital, so you'd have to talk to your doc and get their opinion.

As for gastroparesis - my understanding there is, if your stomach is extremely slow at emptying, then the pill cam will sometimes literally just sit in your stomach for the entirety of its battery life. By the time it actually makes it to the small intestine, it's no longer taking pictures and the whole test is basically a waste. I do recall that someone on the forum once said that she wasn't even able to keep the pill cam in her stomach - she kept vomiting it up. So they sedated her and used an endoscope to insert the pill cam into the beginning of her small intestine, and then it worked fine. So, that's a possibility to circumvent the pill cam just sitting in your stomach, although it seems like a rather drastic one.

I would think that if you can get the test done without doing prep, then it wouldn't be too bad to have the pill cam done. It's a very easy test to do aside from the prep. If they tell you that you have to do prep, then you'll have to weigh the pros and cons. Is doing prep worth placating your doctor? Would it be worthwhile to get an inside view of what's going on in your small intestine? What are the odds that it will answer some of your/the doctor's questions?

 

[Clash]

It could be valuable in assessing inflammation and ulceration in your small bowel since an endoscopy only accesses a tiny portion of the start of the small bowel and an MRI is not infallible at detecting those issues clearly.

I agree with cat-a-tonic, that you would just want to weigh the prospects of prep(if it is required) to the benefits of test.

Since, you are struggling with maintaining weight it might be helpful in determining if there are unseen issues in the small bowel but I would also question the GI to its efficacy when dealing with gastroparesis.

 

[LizzieB]

Hey Unxmas,

It's a lot of faff!! I had to fast from 6am on the Tuesday, until 5pm on the Wednesday. I had my pill cam at 8:30am and had to go back at 16:30 to get the belt and pack taken off. I also couldn't drink from midnight on weds until 15:00. I felt weak, dehydrated and incredibly heachachy. It took a couple of days to come back round. I also had x2 sachets of piccolax at 14:00 and 1900 on the Tuesday. So it's pretty much 3 days of not leaving the house (as the prep was still active on the thurs too!) with a middle day of not leaving the loo at the hospital.

Saying that, that's where they seem to have found my active Crohn's (small intestines). But as for the your issues. Is it worth it? Maybe not. It's got more chance of getting stuck if you have a stoma too. Sounds like your doctor is a bit of a cow bag. Although if you don't comply they usually treat you worse for not taking their advice. It's a tough one. Maybe they can do half of a pill cam through the stoma?

I really feel for you on this one. It's a pretty dramatic few days of you need the prep and fasting. I'm not massively sure what exactly she's looking for or trying to rule out for you. Can the weight problems lay solely in the small intestines? If that's the only area left to look through then you may want to have it done. Although I'd find out how she intends to treat whatever she might find/if there is a treatment. She must have an idea if she's wanting to do the test. I'm infuriated for you

 

[UnXmas]

I don't think this doctor expects to find anything, I think she just wants confirmation that there's no physical reason for my weight problems. I'm definitely leaning towards not having it.

 

[LizzieB]

What happened in the end up?

 

[UnXmas]

My test isn't until November (same as my gastric emptying study). The NHS has long waiting lists for non-urgent appointments, and frequently bump people back on the lists if more urgent cases come along. I can't complain - I know I've bumped many people back when I've been the urgent one.

 

[UnXmas]

I now have an appointment date in November, so will need to make a decision soon. I just had the gastric emptying study done, so I'll know whether that test proves useful when I get the results, whenever that might be. The pill cam info says it involves half a day fasting the day before, one trip to the hospital (it's a long trip for us), wait a few hours at the hospital, then get to leave the hospital and return after eight hours. But I need to check with them on the timing of this because I have an ileostomy - I'm thinking it will take a considerably shorter time for it to pass through than the info leaflet suggests.

 

[Cat-a-Tonic]

It sounds like you won't have to do prep for the capsule endoscopy, so that's good news at least. And yes, it should pass through you more quickly than 8 hours. When I had mine done, they told me that the battery in the capsule lasts about 8 hours, so even if it's still travelling through you, it won't keep recording past about the 8 hour mark. But if it passes through you faster than that, you should see the capsule in your output and can then return to the hospital. (They have you wear a belt which receives the information sent by the capsule and saves it to a hard drive, and that belt is the only thing you'll need to return to the hospital - they don't make you return the capsule itself so you can throw it away or keep it as a souvenir once it comes out.) Given that you have a stoma, I would check with the hospital to ask about the 8 hour time that they typically tell people. But I would imagine it wouldn't take that long in your situation.

 

[UnXmas]

For some reason I assumed they'd want the camera back!

I also want to ask them about the possibility of it blocking my stoma. I asked a doctor when they first told me about the test, and he said it was no problem, but my stoma blocks so easily, I don't feel confident about it. I'm not sure I will whoever I speak to though. Clearly the cameras are supposed to pass through stomas as they ordered the test knowing I have one, so any doctor will probably tell me it's fine, but whether it will pass through my stoma is a different question altogether. I am not doing anything that will risk me ending up in hospital again! I've googled it but can't find much information on having a capsule endoscopy with an ileostomy. This has become my main reason for not wanting the test now. I would put up with the hassle - and there's no mention of a prep, so that's all fine - but it's still the case that the doctors are just doing this to confirm they've missed nothing, not because they're expecting it to provide some useful information, and risking a blockage over that doesn't seem worth it.

 

[Cat-a-Tonic]

If you're worried about a blockage, ask if you can do the patency capsule beforehand. It's the same size & shape as the real capsule, but if it gets stuck then it dissolves and will not cause a blockage. They can do x-rays to see where the patency capsule is and if it's passing through properly. I had asked to do the patency capsule, but for some weird reason, I was told that here in the US it actually costs more money to do the patency capsule than the actual camera capsule, and insurance often doesn't pay for the patency capsule so it would have cost me thousands of dollars - I have no idea why, as that seems so stupid to me for it to cost so much and not be covered by insurance! But at any rate, hopefully the medical system is not as stupid where you are (you're in the UK, correct?) and they will let you do the patency capsule.

 

[UnXmas]

I am in the UK (and I know I've said this many times on this forum, but I remember never to take that for granted! I probably wouldn't even consider the vast majority of the tests, appointments and treatments I have if I was having to pay for them!).

I will ask them about the dissolvable capsule. I'm not sure they'd be able to do it in time for the date of the real test (NHS is very slow, long waiting times) so it would probably mean putting the test off for a while, but that would be ok, I'm not in a hurry.

But if the dissolvable capsule causes no problems, would that mean the real one wouldn't either? I'm wondering about that because there have been times when I've eaten a food with no problem, then had the same food, similar amount on another occasion and had problems. I'm assuming that the dissolvable one is used usually to check it can get past strictures, but strictures stay in place whereas stoma blockages seem less predictable. Sorry, I know this sounds paranoid, but I am so sick of being in hospital, having spent so many months in and out of there this year and last. I don't want another surgery and hospital stay. Every little twinge I get in my stomach sets me worry I've another blockage building up.

The other thing that's changed since the test was ordered is that I've been allowed to switch to a different gastroenterologist, so I'm no longer seeing the one who wanted this test to prove there's nothing severe enough wrong with my digestive system to account for the trouble I have gaining weight. I'm not sure whether or not the new gastroenterologist will agree that it's better to have this test in order to rule everything out.

But I'll ring and try to get some more information. Thank you for your help! Btw - did your capsule endoscopy show things up that weren't found on other tests?

 

[LodgeLady]

UnXmas I feel so bad for you. I also have a doctor who is not totally convinced about some of my symptoms despite lab results. You know your body. And yes this disease puts people in a mental stress. I am very weary of eating certain foods because I get severe onset of pain and nausea for which right now can't find an explanation for. So it must be diet right? So then who wants to eat certain foods and risk feeling like crap? I totally understand and I am so sorry your going through this. I may be facing the pill cam in November. I won't know till my apt on Nov 13. Best of luck to you and prayers as well. ((hugs))

 

[UnXmas]

I'm sorry you're also having problems, LodgeLady. My situation is kind of different because my weight loss is so extreme. I do sort of understand why doctors would suspect eating disorders when tests don't account for weight loss, especially since I'm young and female. My GP keeps telling me that doctors have a responsibility to consider eating disorders.

But this time it's not at all reasonable because I spent weeks in-patient, having someone monitor me twenty-four hours a day, recording everything I ate and drank. They were doing a lot of tests for physical things wrong with my digestive system and trying out treatments as well, they do obviously know there are real physical things wrong with my digestive system. But the one-to-one supervision by mental health workers and nurses was to ensure I was not making myself sick, secretly exercising, lying about what I eat, etc. to rule out or confirm an eating disorder. I actually was happy to do it at the time, because I've been accused of having an eating disorder for as long as I've been ill, and this seemed like a chance to finally prove I don't (or at least, not a body image issue - I do get paranoid about food making me ill, but that's not irrational!). The nurses, dietician, doctors, etc. were all amazed I could eat like I do and be so thin, and still lose weight when they weighed me.

But now this doctor has disregarded that entirely! I guess she thinks the people supervising me weren't doing their jobs properly. Maybe it's easier for her to believe that than to believe that there's something physically wrong with me that has not shown up on tests and which she can't understand.

I've made up my mind not to do the pill cam, but because of the blockage issue only. I'm not going to see this doctor anymore, so I don't have to worry too much about a normal pill cam result (or more accurately, a pill cam result that doesn't show anything that wasn't picked up by the endoscopy and MRI) which doesn't account for my weight being used by her as further proof I have an eating disorder. But I do think the test will not show much - often my tests don't, and I don't want to risk another blockage for that.

Do let me know if you have the capsule endoscopy, LodgeLady, and if it proves useful to you. And I hope your doctors start treating you better, whatever your tests results show! :hug: