Calprotectin over 7000!!!

I just got a call from my GI’s nurse and she sounded really alarmed, she said she just got the results back and my calprotectin is higher than anything they have ever seen before in their practice.
She said I should go to hospital preferably, and especially if I feel unwell.
My symptoms are not so extremely bad. Im having maybe 4-5 BMs a day and the first part is watery but the rest is semi-formed.
Urgency is severe though. Bleeding is minimal or maybe not very visible.
There is moderate cramping when I go.
Should I check myself into hospital or are these results not that unusual for UCers?
Thing is I hate hospitals and would do anything to avoid one.
Im waiting for the Stelara to kick in, due for second dose next week.
And pred makes me half crazy and besides recently pred enemas and oral entocort made my flare alooot worse with bleeding increased +++ when I went on them. So iam trying to avoid steroids for now.

I had a calprotectin over 10,000 last February (I’m down to around 3000 as of last month) I had had a weeks-long flare a few months earlier (10-15 x per day, no fever, bloat or pain so no suggestion of hospital). I had also been treated for C Difficile around that time, which recurred around the time of the high calprotectin test. Have you been tested for C Diff and other infections? I had no clue that I had it (was tested as part of pre-biologic work up) and the symptoms are very much like a flare. Anyway my doctor didn’t know if the high number reflected colitis or c diff.
I listened to an IBD specialist talk on the Crohns & Colitis website recently. His comments about calprotectin (as I understood them) were that it’s a good indicator but they’re not sure if reflects past or current inflammation, as it doesn’t always correlate well to colonoscopy results and symptoms.

I agree with the others re the hospital. Are you allergic to mesalamines?

q

I suspected about the mesalamines. I'll have to make sure I remember 😊
What about something like xifaxin
q

Thanks Quincy and Bacon girl!

All good Quincy, it's hard to remember what everyone is allergic to with all of us on this forum. I should probably note it in my signature.
With Xifaxin I suppose my GI may suggest something like this depending on what comes out of those stool tests.
I have tried it two to three times in the past though, most recently about a year ago, to treat an overgrowth of a certain type of bacteria that came up in my GI mapping test called Desulfivibrio piger which is apparently commonly overgrown in IBDers (?cause vs effect of the disease).

Joanna oh my Iam so sorry you had 30x poops a day. My flare ups tend to be bloody so if I pooped this many times with the same amount of blood for each BM then Iam not sure I would be alive.
Iam so glad you are stable on the Rinvoq. Remission is sweet.
That's interesting that you respond to IV steroids but not oral pred. As much as I dread anything steroids (read: anxiety, heart palpitations, insomnia, mood swings, depression) that does give me hope that there is a plan C should things go haywire.
It's been 8 weeks since I had my loading dose of the Stelara.
Iam due for the next shot very soon.

Oh darn! I'm sorry Joanna that you are still having symptoms that are affecting your quality of life. I hate it when this happens: med works but side-effects or something else is amiss and you are left in this weird place of not knowing whether to call it quits and try another med, or to "soldier on" and potentially continue to suffer.

If you are contemplating carnivore diet just know that with all these restrictive diets there is a risk of reacting worse to foods, that have been eliminated, once you try to re-introduce them.
And some people even swear these diets made them lose tolerance to foods that didn't seem to bother them previously.

When you say Rinvoq is controlling the inflammation I'm assuming that your calprotectin is coming up really good?

I'm wondering if you have a some kind of yeast overgrowth in your gut because you mentioned struggling with fungus/yeast issues alot since being on the high dose Rinvoq and the 30 mg, I remember you mentioned persistent thrush and on your scalp too. So maybe you also got it in your gut too now? Maybe a course of nystatin for a few weeks can help out.
I know you dropped to the lower dose 15mg but with yeast once it's there it needs treatment. And then hopefully you won't get it again as long you maintain on the 15 mg.

Hey there Joanna,
Oh wow, Iam sorry about this trouble you are dealing with. That sure does sound frustrating. Did you manage to "grow out "of the food allergies you got in your first bad flare? If you did then perhaps you will grow out of the new allergies too.
I gained weight too when I was on Rinvoq. I didn't mind it though. I felt like I had some weight "insurance" should things go south. And they did haha, and I lost weight. I'm glad I had some extra kilos.
Now if you want to try carnivore then again the extra weight you have now may be an advantage.
I'm like you in that SCD, paleo diets all make me lose weight. Alot of weight. It doesn't matter how much fat I eat to compensate the loss of carbs, I still lose weight.
I just had the second Stelara shot a few days ago. This time I took antihistamine the day before, the day of the injection, and even the day after. And I made sure to stay hydrated. I think all that plus the lower dose, compared to the first loading dose, all helped me avoid the reaction I had the first time (shakes, hypotension, temp).
There is nausea and lack of appetite though, but handling it ok.
Symptoms-wise: it's too early to tell. But maybe there is an improvement since the second dose? I felt some improvement but then I got my period and my bowel played up again and spent a good chunk of the last night going to the bathroom. Today I had some extreme period pain which I haven't had in a long time. Like I was bed-bound for most of the afternoon with hot packs, antispasmodics, panadol etc. Not sure whether the inflammation from the IBD is making my periods more painful, or if it's a side effect of Stelara. Hopefully it's just the inflammation.
Iam also like you in that I lost my period during some of my recent flares. I was actually told I have premature ovarian insufficiency or premature menopause. I was told to go on HRT. I refused. Then after many months and the Entyvio at the time my hormone levels returned to mostly normal. But it seems flares can disrupt hormones for some of us.