Refusing screens that require ingested preps

[InstantCoffee]

I haven't seen my doctor for a very long time, I want to go back to get an idea of the state of my condition.

Will I be severely limiting them if I refuse any kind of screen that requires me to ingest some kind of solution / dye?

Barium solutions cause massive distress in my stomach as do any kind of laxatives for a colonoscopy prep. I'm not going to make my condition worse before a test because it will just make the results worse, as well as make me feel terrible.

Currently I'm planning on asking them to test my inflammation markers, then a detailed test of my blood for vitamins, minerals and hormone levels.

I'm open to endoscopy / colonoscopy as long as it's just fasted with no prep. Just no upper GI series, MRI, CT scan or emptying studies. They're always torture and never gave any useful results for me.

 

[Robrich]

I tend to decline ingested contrasts esp barium. I know barium exacerbates the disease for me. MRI/ct scan with contrast agents also makes me ill in non CROHNS ways.
The colonoscope prep although torturous does make feel better.
Maybe they can just do a flex sigmoid, they do that without prep or just a fleet enema.
You can get a pretty good idea of gut inflammation with the fecal cal protectin test along with esr, CRP and CBC. look for high WBC and anemia.
Try and talk your doc into an ultrasound which may reveal strictures, fistulas and other extra intestinal manifestations. If you pass those ok and you don't have symptoms I would leave it at that. Good luck

 

[Mr chicken]

You can do miralax prep only ( no laxative - takes a few days ) very easy on the system kids use it )
There are other solutions for contrast ( milk plus blueberries or milk alone or Metamucil etc))
DS is allergic to all contrast dyes etc....

 

[Clash]

The preps are sucky but honestly how do you k ow what is really going on inside without them? My son is asymptomatic now, if we relied on the tests you mentioned having done without the tests you are refusing it would have appeared he was in remission when in actuality he required surgery.

Like Mr chicken said you can opt for contrasts like milk milk and blueberries etc to avoid barium but all of these tests are important in assessing where you truly stand as opposed to just an absence of symptoms

 

[InstantCoffee]

The preps are sucky but honestly how do you k ow what is really going on inside without them? My son is asymptomatic now, if we relied on the tests you mentioned having done without the tests you are refusing it would have appeared he was in remission when in actuality he required surgery.

Like Mr chicken said you can opt for contrasts like milk milk and blueberries etc to avoid barium but all of these tests are important in assessing where you truly stand as opposed to just an absence of symptoms

It's beyond sucky for me, my adverse reaction to ingested triggers are extremely painful. What good is ingesting something that will trigger a flare before a test? It's going to produce misleading results.

 

[24601]

What symptoms do you experience before the tests? And how long to do they last afterwards?

I'd think it's important to have some imaging of the whole bowel (or at least the parts of your bowel affected) and also abdomen because it's the only way to get a better idea of what's actually going on inside - and to identify any complications that need treatment.

I'd ask your GI about the possibility of different preps for an MRI - though they will probably need to speak to the radiologist about this and different radiologists will have experience with different preps but hopefully they would look into all the options for you.

I have MRIs that start without prep and my radiologist says she gets really good pictures without so perhaps that's an option for you. The alternative preps sound like they may be an even better/more viable option though.

What about a camera pill? That maybe tricky though if you haven't had a scan to rule out strictures.

I'd be wary of having an ultrasound to rule out strictures unless the person doing it is highly skilled at using ultrasound for this purpose. As with any scan the quality of the information relies on the person doing it and I don't believe that ultrasound is that widely used for this still so you'd want to make sure your test was being carried out by someone with experience of looking for Crohn's complications and a good track record! Back in the day the radiologist who did my small bowel follow throughs decided he'd try it and couldn't find my 40cm stricture - so that was good news until he repeated the barium follow through and found it right where it had always been!

Certainly the bloods and fecal calpro sound like a good idea. When did you last have those tests done?

 

[Clash]

It's beyond sucky for me, my adverse reaction to ingested triggers are extremely painful. What good is ingesting something that will trigger a flare before a test? It's going to produce misleading results.

With imaging they are looking for a thickening of bowel which would be stricturing due to scar tissue or inflammation. It's highly unlikely that any reaction you had to contrast would be something that would show up on the imaging.

There are people allergic to the contrasts and that is why they have other preps available like the ones that are mentioned.

And as Mr chicken mentioned Miralax can be used for scope prep as it is easy one the go tract and can be extended over a couple days along with a clear liquid diet to clean you out.

 

[tots]

Just had a CT where I drank a watery barium. I was bleeding by the time I got home. The only positive was my test result. I think it was the
first time my Dr bought the fact I have CD.
I am a hard case to treat. I said. Aren't we all? It's different for all of us.
Not like the flu.


Hope you get help and relief soon.

Lauren

 

[InstantCoffee]

What symptoms do you experience before the tests? And how long to do they last afterwards?

I'd think it's important to have some imaging of the whole bowel (or at least the parts of your bowel affected) and also abdomen because it's the only way to get a better idea of what's actually going on inside - and to identify any complications that need treatment.

I'd ask your GI about the possibility of different preps for an MRI - though they will probably need to speak to the radiologist about this and different radiologists will have experience with different preps but hopefully they would look into all the options for you.

I have MRIs that start without prep and my radiologist says she gets really good pictures without so perhaps that's an option for you. The alternative preps sound like they may be an even better/more viable option though.

What about a camera pill? That maybe tricky though if you haven't had a scan to rule out strictures.

I'd be wary of having an ultrasound to rule out strictures unless the person doing it is highly skilled at using ultrasound for this purpose. As with any scan the quality of the information relies on the person doing it and I don't believe that ultrasound is that widely used for this still so you'd want to make sure your test was being carried out by someone with experience of looking for Crohn's complications and a good track record! Back in the day the radiologist who did my small bowel follow throughs decided he'd try it and couldn't find my 40cm stricture - so that was good news until he repeated the barium follow through and found it right where it had always been!

Certainly the bloods and fecal calpro sound like a good idea. When did you last have those tests done?

My doctor must have sucked because I don't think I've ever had fecal calpro done. It requires a stool sample right? because I never gave one.

They never took my symptoms very seriously despite weighing under 100 lb.s and getting no sleep with severe inflammation and malnutrition.

I probably should have been in the hospital.

And he was supposed to be a crohn's specialist lol. All I think he cared about was pushing Humira.

 

[24601]

Do you think finding a new doctor for you might be a good idea?

It may be that fecal calprotectin tests weren't done at your hospital/GI practice at that time. I know that they still aren't as widely used as we'd all like.

But it certainly sounds like it would be better if you found a doctor who you feel is open to talking about all the treatment options and whatever you decide - even if it is to not have any conventional treatment - I think it is important to have monitoring of your disease.

If you can find a doctor who is a good listener and will take into account your concerns then hopefully they can find a way to do imaging that you will be happy to accept. I think there are options.

Also I don't know if you've tried any meds before and I do understand having an idealogical resistance to them but I wonder if you're at the stage where you've tried long enough with diet, and found it not entirely practicable, and if you couldn't possibly have a better quality of life with a medication added to your dietary treatment.

I think that having a good GI on your side who is monitoring you and perhaps keeping the dialogue open about all the treatments available - anti-MAP antibiotic therapy, partial enteral nutrition as maintenance, the whole range - would be beneficial.

I know it's hard to find a GI who is a good fit but just like the treatments for Crohn's it's a bit trial and error but we can't give up

 

[UnXmas]

In principle I agree with turning down tests because you have reason to think their effects on your body will not be worth the potential information they could bring. I turned down a capsule endoscopy. I felt odd about that because I've read posts here where people ask for capsule endoscopies and their doctors refuse. But for me, it wasn't worth it: I thought it could block my stoma, the doctors said the risk was low, but they hadn't taken in just how prone to blockages my stoma was. And the doctors themselves told me they only wanted the capsule endoscopy in order to be thorough, they didn't expect it to bring much information that they hadn't already got from other tests. So I knew turning it down was the right decision for me - but that doesn't mean I think no one with a stoma should ever have one.

If you don't think a test will be worth it, don't do it, but make sure you're certain other tests can provide the information needed, and that you're correct about the negative effects the test will have (and only if the effects are going to be serious or have long term consequences, not just because you don't like the taste of barium, obviously). But I couldn't say what tests would be needed for you or whether the risks worth it in your case.

 

[InstantCoffee]

Do you think finding a new doctor for you might be a good idea?

It may be that fecal calprotectin tests weren't done at your hospital/GI practice at that time. I know that they still aren't as widely used as we'd all like.

But it certainly sounds like it would be better if you found a doctor who you feel is open to talking about all the treatment options and whatever you decide - even if it is to not have any conventional treatment - I think it is important to have monitoring of your disease.

If you can find a doctor who is a good listener and will take into account your concerns then hopefully they can find a way to do imaging that you will be happy to accept. I think there are options.

Also I don't know if you've tried any meds before and I do understand having an idealogical resistance to them but I wonder if you're at the stage where you've tried long enough with diet, and found it not entirely practicable, and if you couldn't possibly have a better quality of life with a medication added to your dietary treatment.

I think that having a good GI on your side who is monitoring you and perhaps keeping the dialogue open about all the treatments available - anti-MAP antibiotic therapy, partial enteral nutrition as maintenance, the whole range - would be beneficial.

I know it's hard to find a GI who is a good fit but just like the treatments for Crohn's it's a bit trial and error but we can't give up

I was on remicade 2004 to 2010 or so then Humira for about 2 years, both stopped working. Azathioprine never had an effect. Prednizone also stopped working.

While i was off all medications due to an infection I began changing my diet and I went from literally dying to pain free and feeling very good in a few months.

I raised this with my doctor and they told me that the inflammation was too severe to be food induced, but didn't explain why it went away without medications when the only variable that changed was diet.

After about $1200 in scans that all came back inconclusive, that was it for me. I didn't come back.

At the time all they could tell me was that the inflammation around my gastric sphincter was so severe they couldn't put the endoscopy tube past it, however they didn't mention any strictures or blockages on the other scans.

The emptying studied showed delayed emptying, but my stomach does that with anything it doesn't like, which include the barium, so that doesn't really help.

 

[24601]

It might be a good idea to get copies of all the reports from the tests you had so that you can check yourself whether there was anything of concern at that time - I've found that doctors do not always mention things even when they are significant. Hopefully there's nothing but that's also good to know.

And I do still think finding the right GI for you would be helpful - someone who can work with you and monitor inflammation levels (which hopefully are low to non-existent) because it's really tough to do this alone. And having access to measures of inflammation like fecal calprotectin tests might really help you find the right diet for you as I know that it's still a work in progress.

I just think it's great to have back up there in case you need it too and since it's not always easy to find a GI that is on the same page as you it's good to have that in place in advance of any change that might cause you to need a GI quickly.

I do understand where you are coming from though in having mixed experiences with meds and finding they either don't help or don't do enough to control the disease. For me methotrexate was the first med that I didn't have bad side effects or a severe reaction to and it also helped reduce the inflammation quite well - and for me having any effect was valuable. I need diet as well to control symptoms though so it's never been a question of just taking the meds and that's it. And for me it's been really helpful to have doctors on side to keep a close eye on inflammation levels.

I think you're right though that bloods and hopefully fecal calprotectin and any other imaging that you can do would be useful at this point as a check on where you are.

I hope that all the tests come back showing no inflammation - do let us know how you go!