Confused and worried about test results

[rainbowcloud]

Hi everyone

I had a calprotectin test a few weeks ago that was very high (around 4500), so when I had my flex sig today I expected to see some pretty bad inflammation. But the part of the sigmoid colon that could be seen (the prep was awful, they gave me an enema only about fifteen minutes before they took me in so most of it was still in there - which also made the whole thing really painful) looked healthy.

I had bleeding patches, but the report said it was more consistent with SRUS than colitis. Then, when I was discharged, the nurses gave me the IBD nurse specialist number. So I asked if it was IBD and they said yes. I am confused about this, because SRUS is not the same as IBD, and why would the mucosa look so healthy if my calprotectin level was so high?

Is it normal to have such a problem understanding the test results and having test results that don't seem to fit together? I asked the nurses today my questions but they didn't really seem to know the answers. I didn't get to talk to the doctor. How can I make sure they will do enough investigations to actually get a firm diagnosis? I am worried that there may be a problem somewhere else apart from what the flex sig was able to show.

 

[Maya142]

You are right - it is possible that there is inflammation higher up in your colon or in your small bowel - none of which is seen with a flex sig. Generally when IBD is suspected, they do a full colonoscopy and often an endoscopy too - is there any reason they did not do that?

With a Fecal Calprotectin that is that high, I would expect that there is pretty bad inflammation somewhere.

I'm not familiar with SRUS, so can't comment on that. But if they are referring you to the IBD specialist nurse, perhaps they suspect IBD and think you need more testing?

I would push for a full colonoscopy and endoscopy as well as imaging of your small bowel because your Fecal Calprotectin is so high.

I'm assuming you are in the UK - is that right? Hopefully some of our UK members will chime in soon.

 

[rainbowcloud]

Thank you so much for your response. It is really helpful and reassuring to talk to someone about it.

When I left today, they said I might need a full colonoscopy. In the report though, the surgeon said I might not be able to have it as the flex sig was so painful (I broke into a cold sweat and was struggling not to hyperventilate, thank God the nurses were kind otherwise I don't know how I would have got through it). I haven't heard anything about an endoscopy. Hopefully I can discuss both of these with the IBD nurse and imaging as well. I don't think I will cope well with any more scopes though. Do they ever just give you a general for those things?

I'm in the UK, that's right. I've been through the NHS for other problems before and they were no help at all, so I'm worried. I've been seeing my GP for ten years with fatigue and stomach problems and they never did anything until I changed GP and started having bleeding that hasn't gone away. I had other problems and just got fobbed off for them basically, and I'm worried this is going to happen again. Except I can't just let it happen because my symptoms and calprotectin.

 

[Maya142]

So it is my daughter who has Crohn's, not me. We are in the US. For kids, they do use general anesthesia for scopes. For adults, they tend to use Propofol so you are asleep but not as deeply asleep as general anesthesia (and you're breathing on your own). It is standard to be asleep for colonoscopies here, but I know it is different in the UK.

You know your body best - keep advocating for yourself. I know it is REALLY difficult when you don't feel well, but keep pushing till you get answers. It does sound like they think you need a colonoscopy which is GOOD. I would just ask if there is any way it can be done with sedation/anesthesia. I know there are some UK patients here who have had it done with anesthesia/sedation of some kind.

An endoscopy would be done because Crohn's can affect the upper GI tract too - the stomach, the duodenum (which is the first part of the small intestine) and the esophagus. When my daughter was diagnosed with Crohn's, she had inflammation in her stomach, her terminal ileum (last part of the small bowel) and all through her colon.

So generally if they suspect Crohn's, they will do both upper and lower scopes and will then check your small bowel with either an MRE or a capsule endoscopy (pillcam). If the scopes show that it is Ulcerative Colitis, then they may not do small bowel imaging since UC affects the colon only.

Hang in there!!

 

[Scipio]

Hopefully I can discuss both of these with the IBD nurse and imaging as well. I don't think I will cope well with any more scopes though. Do they ever just give you a general for those things?

I don't know about the UK, but here in the US both upper endoscopy and colonoscopy are usually given under "twilight sleep" - not quite full general anesthesia, but you are out of it enough that you feel little or no discomfort and often cannot remember it much at all after it is over.

 

[rainbowcloud]

Thanks for the support and advice! I am having a minor freak out because my blood results suggest reduced kidney function too. I hope I can get an appt with my GP tomorrow...

 

[erk]

I had my first colonoscopy recently (uk), I had oxygen, midazolam, fentanyl, buscopan, entonox. I think it's the entonox that's that "twilight sleep" mentioned above, keeps you drowsy for the duration and you come back round to normal pretty quickly afterwards. I had some moments of pain but the nurses were quick to react and administer painkillers which were very effective. The prep is the worst part but it sounds like a good idea to see what's going on in there, good luck

 

[rainbowcloud]

Hi erk, thanks for the support I really hope it's not entonox that they give for a colonoscopy, because I had that (it's gas and air, right?) for the sig, and it didn't really do much. It definitely didn't make me drowsy at all. I'm going to try and speak to the IBD nurse today. I just wish it was quicker to get a diagnosis, I hate all this uncertainty.

 

[erk]

Ahh I see, sorry to hear that. I think some of the other painkillers they give (in my case I suspect the fentanyl) were very effective, I remember at one point looking at the ceiling and seeing all kinds of colours, it was quite an experience! From what I understand there's a nurse that stays by your side for the duration to monitor the pain and administer painkillers, so if the entonox isn't cutting it they will provide more painkillers.

Totally understand your frustration waiting for a diagnosis, I've been waiting from October, it would be really helpful just to have a confirmation of something.

 

[rainbowcloud]

Oh no erk, that is a long time to wait. Are you happy with what they're doing to find out what's wrong? I hope they are looking after you. Have they told you what their plan is?

Maybe it will be better with more painkillers and sedation. I would rather have the test and find out what's wrong than not. I read in the patient leaflet they gave me that there's an imaging study they can do instead, but they can't take biopsies with that so it's not as good.

 

[Jabee]

Midazolam (a heavy duty benzodiazepine) is what makes you go to sleep during scopes; fentanyl is used to help with the pain. I would be surprised if you don’t have inflammation further up than the flex sig can see. With a cal protection level of 4500 and bleeding you definitely need more testing to figure out what’s going on. Who performed the flex sig? If you’ve been directed to speak with an IBD nurse then it sounds like they think it’s more than SRUS which it probably is. I hope they’ll be able to get you in for scopes and either a capsule endoscopy or a CTE.

 

[rainbowcloud]

Jabee thank you for the very useful information. A surgeon performed the flex sig at my local hosp. I didn't get a chance to talk to him though, I think that's probably pretty common since they were really busy. I hope they will do more tests to find out for sure too. I guess it depends on the biopsy results somewhat though? I don't know whether its worth trying to talk to my GP or the IBD nurse. Part of me just thinks might as well wait it out for my outpatient appt in a couple months as don't want to be a bother when the health service is already so stretched.

 

[Womble]

Hi rainbow, as for the sedation,it seems it varies over here, some
People are unaware and others are relaxed but awake, and that’s just at my hospital. The will stop or up the dose if needed.
Afterwards you have a few sets of obs cuppa and bicci, they discuss findings and off you go, they then either discharge or arrange a follow up.
As for the IBD nurses, out ones also deal with diverticula disease and other conditions.
Don’t be afraid to call them, they don’t always call back but if they don’t you leave another message(it’s an answer service here and they prioritise the calls etc) but they are very helpful.
Have they retested your calproctin? The one they use here only goes up to 1800(‘only’)
Hope you’re feeling a bit better

 

[rainbowcloud]

Thank you for explaining all that Womble They haven't retested calprotectin, I wondered if they might but I think they will just wait for the biopsy results now. I thought I was improving from last week but I felt bad again today so a bit worried. If I still feel this bad on Monday I will get in touch with my GP or the IBD nurse. If I'm feeling better I will just get the suppositories and see how it goes. I'm so grateful to have support here, it is scary to get these symptoms otherwise!