Pill cam tomro and VERY disconcerted!

[LizzieB]

Hello everyone,

Well today I'm prepping with piccolax for my Enteroscopy capsule. I've had a colonoscopy and OGD as well as an MRI. They found ulcer on the ileum but not signs of crohns in it apparently, so testing my small intestine.

I've just read so many horror stories on here about it getting stuck!! I'm not absolutely terrified! I'm supposed to take my first prep at 2pm and I'm really reluctant. It's been such a traumatic start to diagnosis (and I've heard the same for many) but if I have this and it gets stuck and doesn't even find anything I will be in a worse position than I am right now. I'm in tears writing this. I've had no advice at all about what can/will happen. I even had to call up to find out I need to do any prep and fasting at all as no info came with the appointment.

I'm just so down today. Maybe I should just stop the fight, live with the pain and decide a diagnosis isn't something worth battling for.

My last ditch attempt was the fecal calprotectin. My levels whilst in hospital we're incredibly high, I've just had another and it's really normal.

What should I do? People who have had pill cam as well please advise? Xx

 

[DJW]

Hi LizzieB,

I've never had a pill. Getting a diagnosis can be such a battle.

Sending you my support.

 

[UnXmas]

I understand your dilemma. I was referred for a pill cam recently - I have a diagnosis, but the doctor wanted to find out why it takes consuming so many more calories than a normal person for me to gain weight. They'd already done test after test with no answers. I don't expect the pill cam to reveal anything either, so I don't know if it will be worth it to go through all the fasting, travelling to and from hospital, etc. I did ask a doctor if it would be ok going through my stoma as I thought it might block it - he said it would go through fine, though I'm not sure I take his word for it.

I have a couple of different medical conditions and had a huge amount of trouble getting diagnosed. In some ways I found being diagnosed an anti-climax - I didn't feel like I'd found the answers I'd been looking for, not really.

If you were diagnosed with Crohn's, it may well open up more potential treatment options for you, but, especially if you've had a lot of negative or inconclusive test results before, I think you have to be prepared for the pill cam to be negative too. All that said, I'm sure someone could make the argument that you've got this far: if you go through with the pill cam it will be over and you'll be relieved you got it done. But if you do, don't pin all your hopes on it showing something useful.

 

[SupportiveMom]

My daughter is getting a pill cam next month. I have been told to request a 'dummy cam' to make sure she can pass it. I am worried too when you hear some of the negative stories. Most though have little issue so they to be as positive as you can. Keep us updated & know we are rooting for you.

 

[LizzieB]

Hi everyone,
Thanks for your positive wishes. I did have the pill cam in the end. There's a few things I felt a bit odd about. The first being that of the three people I saw, each one have me different stats for it getting stuck. It's almost like they're just making it up. One nurse said about 1/11 have issues, another said nobody have ever had it stuck and the researcher who actually gave me it said he's only had 3 occasions of it getting stuck in his 11 years of handing it out. Odd and quite disconcerting.

So I had it as my desperation to get a diagnosis outweighed the complications of having the pill cam. I had a few grumbles and uncomfortable moments during the day, although that's possibly nothing to do with the pill. I handed back the belt and camera pouch 8 hours later and the pill had not passed. All together it took around 13 hours for the pill to pass, the last hour being quite uncomfortable. It kept feeling like I had a bloating of pressure that got to the point of being painful then it was like someone popped it with a pin.

I didn't actually feel the pill pass, but the last effects of the piccolax probably helped.

What I've learnt is that all hospitals have different procedures. Some don't expect you to take and prep at all. I would absolutely demand the prep in this case. It offers clearer pictures but also helps give the pill a push when it perhaps would otherwise struggle to come out.

Other hospitals offered x3 more cups of prep than a colonoscopy. I had the same amount as a colonoscopy. But if you feel you struggle with your bowel movements or strictures, or they've found scar tissue in the past you've for to talk to them about this before they'll offer you extra.

Good luck everyone. It would be interesting to find out whether anyone has ever had a pill cam that came back clear but later had a diagnosis. My results are on weds, I'm so desperate for answers.

 

[darster]

Good luck, I hope you find useful information in the pill cam. I'm too late to this party, but I did a pill cam with no complications. Hang in there!