My experience of having a pill cam for Crohn’s Disease+my results — A Balanced Belly

My experience of having a pill cam for Crohn’s Disease+my results — A Balanced Belly


So today, I’m going to guide you through the process of having a pill cam for your Crohn’s disease. This is something that I was trying to Google because I had to pill cam a few weeks ago!

And I couldn’t find many experiences of people with pill cams it’s a relatively new procedure, compared to things like colonoscopies.

So I thought it’d be really useful to guide you through the process that I went through, how I prepared for the pill cam, how the pill can went on the day, and anything that I thought was particularly useful to know, and also my results, why might you have a pill cam.

Why is a pill cam used for Crohn’s Disease?

So there are several reasons why a pill cam might be more beneficial than other tests such as colonoscopies at endoscopies. The first is they’re a lot less invasive. So if you’ve followed my blog for a while. You might remember that I actually developed an abscess after having a colonoscopy previously.

And therefore, my doctors were we reluctant give me another one unless it was really needed; especially because I don’t appear to have IBD in the colon (large bowel)

The great thing about a pill cam is that you don’t spend that much time in hospital; you usually just go in and get the pill and then you’re free to leave, and I’ll explain about the procedure in a bit more detail later on. But this obviously frees up staff for hospitals, and it’s a lot less stressful for the patient.

Another advantage of a pill cam, is that you don’t need to usually do the same amount of prep as you would for a colonoscopy. In my case I wasn’t actually asked to do any prep at all. It does seem to vary between different hospitals.

But either way, preparing for a pill cam in my opinion is a less stressful experience!

However, the main benefit for a pill cam, is that you can reach areas that an MRI and a colonoscopy can’t traditionally reach.

This is particularly useful if you have Crohn’s in the small bowel or if you have it in the ileum.

In my case, I have Crohn’s in the ileum. And therefore, it’s really useful to be able to see this area, a colonoscopy can sometimes see the top of the ileum (if you don’t know that’s the connection kind of between the end of the small bowel and the start of the large bowel). It’s a common area for people to have Crohn’s disease, but it’s not as easy to view all the time in a colonoscopy compared to the large bowel because it’s quite high up, and not everybody’s colonoscopy can never necessarily reach that high.

That’s why a pill cam is such a good idea because it can reach these areas and give doctors more information.

Are there any disadvantages to the pill cam for Crohn’s Disease?

However, there are a few disadvantages of a pill cam.

First of all, there is a small risk that your pill cam could get stuck, especially if you’re prone to obstructions and strictures.

This isn’t necessarily a large risk and there is things that your doctor can do.

For example, they can give you kind of a trial run capsule first, which will dissolve automatically, and they can kind of track that to see if it would have got stuck (it doesn’t matter if it does as it’s dissolved!) And that will give them an idea if the real one will get stuck.

Another disadvantage is, obviously, unlike a colonoscopy, you can’t take biopsies. However, these are more necessary for the large bowel than the small bowel anyway.

Of course, another disadvantage is that you can’t necessarily see the large bow in a pill cam. So it’s not a particularly useful test for people who don’t have IBD only in the large bowel.

Preparing for a pill cam with Crohn’s Disease

Google

So I thought I just explained how I had to prepare for my pill cam. Strangely, when I googled this, it seemed to vary massively between different hospitals.

And in my case, I had to follow a low residue diet, three days before the pill cam.

This was a little bit stressful because being gluten and dairy-free, a lot of free-from options aren’t necessarily low residue: for example, even white gluten-free bread contains a lot more fibre than regular gluten-free bread.

So that was a little bit stressful, but it’s doable.

Now, some people are asked to do a prep the day before. Personally I was just asked to not eat after 1pm. So typical liquid diet after 1pm, things like jelly tea breath, those sorts of things.

After 10pm I couldn’t drink any liquids, and then my pill cap was 8am the next day. So it wasn’t a huge amount of time to wait.

My experience of the pill cam with crohn’s disease

One of the great things about the pill calm, is there isn’t as much waiting around. Obviously, with a colonoscopy you are waiting on a bed to be free , you are waiting for somebody to help with sedation, you’re waiting for a doctor. However, a pill cam in my experience was just administered by one nurse, and it was a very simple procedure.

The nurse gave me the pill to swallow it did look about twice the size of your average paracetamol or vitamin but she said to me: ‘You eat bigger things every single day. So don’t think about it. Don’t overthink it. Just swallow it!”

nurse

I was really pleased I managed to swallow it straightaway, and there was no issue there.

Once I swallowed the pill, she turned on the monitor and she could see that the pill had arrived in my throat or wherever he was. And so then she strapped me up, you have to wear a thing around your waist that connects the camera ( I’m not actually sure about the technology and how it works!)

And then you have to carry the camera pack around with you. She asked me to wear it till 8 pm that day so that was a total of 12 hours!

I was free to go. And I had to return the equipment the next day.

That wasn’t ideal because I’ll live about an hour from the hospital, but at the same time, I was really happy to only spend a short amount of time in the hospital, especially because obviously you know coronavirus at the moment. I felt very safe I didn’t really come in I didn’t see any of the patients and I didn’t really come into contact with many people.

X-ray technology
MRI

I couldn’t drink for another two hours and then I couldn’t eat for the four hours, and that had to be a light lunch so I was really hungry at this point!

The main thing they don’t really tell you is how heavy the band around your waist is and the camera pack it reminded me of being pregnant! I had such a bad back because it was so heavy! She asks you to walk around every hour or so just to kind of mimic the fact that you’d be doing that anyway; it helps move the pill through the gut as well.

By the end of the day, I was really ready to take the pack off, it was really uncomfortable but he obviously was a lot less comfortable than doing a colonoscopy. So that was my only big gripe. The nurse at the time had told me that I might not see the pill come out and this is another thing that I had really different reports on because some of my friends were told that they had to track it really closely and report it to their doctor if it didn’t come out.

I wasn’t told that, so I didn’t track it very closely. I did have a look and I did listen out and look for that light that you get from the pill cam. However, I never saw it come out!

I was a little bit panicked about that but there seems to be mixed results as to whether it’s a concern or not. Apparently a lot of the time people just don’t see it, especially if it’s the next day and the batteries went out at the camera, so you wouldn’t necessarily see that light.

To explain how the camera actually works in the pill. It takes photos of your intestines every two seconds. So you’ll see on the camera monitor a blue flashing light, and that’s a connection between the camera on the outside of you and then the pill cam on the inside of you.

And so that’s a lot of photos (about 50,000!) and what areas it covers depends on how quickly it moves through your gut, so it’s believed that after about 10 hours! It should reach the large bowel and the battery life, depending on which camera you have or who you speak to, is anywhere from about 10 to about 12 hours. So it’s thought that it would naturally kind of not record in the large bowel because the battery would run out.

However, some people have a really short transit time, and therefore it might reach the large bowel and it might actually come out in the toilet flushing and the last photo might be off the toilet bowl.

For others, it might just kind of stay in the large bowel for a few days run out of battery and then come out naturally and you might not see, I think, either option is okay, from what I’ve read.

My results from the small pill cam

paracetamol

So, unfortunately my results did show that I had some disease activity.

I haven’t received the full report yet that’s probably going to take a few weeks.

Bear in mind that, unlike a colonoscopy. It does take a few weeks to get your results back because there are so many photos being taken over that eight hours or 10 hour period.

So unlike a colonoscopy that might take them only 15 minutes and they can look at the screen as they do it, a pill cam will take a lot longer because somebody has to look through all those photos.

However, it took about a week and a bit to get my results back onto the NHS, and I’m really pleased with that because I was told it could take like four to six weeks. I haven’t had a full report yet but my nurse just let me know that there was some alteration and that we’re going to discuss different treatment options.

Hopefully I can update these posts a little bit later as to how much detail I got from the pill cam, whether we looked at the large bowel as well as the small bowel whether my doctor thought it was clear then an MRI or a colonoscopy and I can add these to the post.

However, my IBD since having my son has been hard to find. I’ve had clear stool tests and blood tests and an MRI, so I feel like this pill cam, is that perfect test for people who are perhaps finding it a little bit difficult to find that diagnosis.

I’ve talked before about how I also react to that MRI solution to the mannitol. So the fact that I didn’t have to take this either is great! It was a very simple procedure and I’m really hopeful because it’s non-invasive because it’s not using X-ray technology or required lots of hospital admissions that this can be a test that I do regularly.

If you suspect you have your IBD largely higher up in the small bowel or the ileum or if perhaps you’ve had a colonoscopy or an MRI that hasn’t brought anything back but you still feel you have IBD symptoms, I’d 100% recommend asking your doctor about a pill cam.

They are available on the NHS and it’s a bit of a myth that they are more expensive. They’re actually a lot cheaper because they don’t require as many staff or, you know, sedation and all things like that.

I’d love to know your experiences: have you had a pill cam? how did you find it? did you see the pill cam come out at the end?



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