Not feeling good after appointment

[Anxious855]

I went for my first appointment with the nurse today and it was a little unsettling.
All my symptoms are pretty much okay aside from some rectal soreness and slightly sore stomach.
They asked for a stool test and said if it comes back over 50, I will have to be put on Aza. I know it won't come back that low as that's asking for the impossible. Is this the done thing?
I feel uncomfortable moving up meds when my symptoms now are pretty well controlled on mesalasine. I also got given some enemas to try which I am hoping will help the situation.
I guess she worried me when she said that you can have few physical symptoms but still be in quite a bad way on the inside

 

[Scipio]

I presume the stool test is fecal calprotectin (FCP). There are several cut-offs used for FCP. Above 120 probably means some inflammation is present. Above 250 probably means very active disease or ulcers in the bowel. Below 50 usually means the bowel has basically zero inflammation - completely healed or in remission. But there are many conditions that can boost the FCP above 50, so I'd be cautious about taking aza based solely on an FCP between 50 and 120.

Are there other tests being done or planned to assess your current state? colonoscopy? MRI? Or is your doc managing your disease based only on the FCP test?

 

[Anxious855]

Yes it is the fecal calprotectin test. I have no idea what it will come back as this time but if it is between 50 and 120 even at a push up to 150 I would be reluctant to take Aza.
I think she mentioned a flexible sigmoidscopy that may be done too but again that sounds a bit extreme given that I only had a colonoscopy back in March.

 

[Guerrero]

Why are you reluctant to take azathioprin?
It takes almost no effort to take it... its a pill you take at home... ots relatively cheap... its quite effective... no need to go to hospital every other week to have an infusion in your arm etc...

 

[Anxious855]

It's the blood tests and work. I know they have to give me the time off but it will be a nightmare and I don't think I am at that point of needing it yet

 

[Guerrero]

On aza you can have blood test every 3/4 months... it's fine.
From my experience i've learnt it's important to follow good doctors advices, but you can choose to not take a medication if you dont want it...

 

[Anxious855]

It's weekly for a while and I am away throughout December. Do you think they would hold off starting me on it till January?

 

[Scipio]

Azathioprine is easy to take but it is a fairly strong medicine and has risks and side effects. I'd be reluctant to take it too based solely on a slightly elevated FCP. An assortment of non-IBD conditions can sometimes cause modest elevations of FCP. Plus like any test, FCP does have false positives and false negatives. Which is why I asked what else is being done to assess the disease.

If there is nothing besides FCP then the doctor is treating the test instead of treating the patient, which may be a bad move for an imperfect test.

 

[Anxious855]

I guess we wait and see what the calprotectin test says. If it comes back below 150, I will refuse Aza. If its above that, I will have to admit defeat and take it.

 

[Anna's Bandit]

Why a flexible sigmoidoscopy if you already had a colonoscopy ? My calprotectin was 694, but it was my colonoscopy that showed the inflammation and stricture in my terminal ileum. Take Care and I hope you get your test results soon.

 

[Anxious855]

Lynda, I think it is ridiculous too and also expecting miracles seeing as I am only recently diagnosed.
I do think it may well come back as similar to 263 which was my last reading but the reading before that was over 3,000. These was both done before diagnosis. The highest reading was when I was really severe, every bad symptom you can think of. The lower reading was when the diarrhoea has stopped but I had a lot of pain in my stomach and a sore rectum. I still think I have some ulceration in my bowel so wouldn't be surprised if it came back between 200-300 possibly higher. That said, I am reluctant to start on Aza as I have very few symptoms and certainly none that affect my life on a daily basis. There was talk of me increasing my mesalasine dose but the nurse said 'The consultant probably won't do that if the calprotectin comes up high. He will most likely put you on Aza or do a flex Sig'
No say as to how I want to proceed....

I am away through December anyway so will have to start Aza in the new year if there really is no other option.

 

[Guerrero]

unfortunately with this disease, you can have almost no symptoms with inflammation going on inside... that's why testing inflammatory markers like CRP or calpro is also very important as well doing scopes regularly.

 

[Anxious855]

I just think it is unrealistic expecting it to go down so quickly when I was only diagnosed/had a scope in March

 

[Anna's Bandit]

I just think it is unrealistic expecting it to go down so quickly when I was only diagnosed/had a scope in March

I have only been diagnosed with Crohns since April, so I am new this disease. I have learned so much from this forum that when I have seen my GI I already know what he is talking about !! Before my colonoscopy I thought, well, its either Crohns or colon cancer. It was Crohn's. And one day my GI seemed so proud to show me where my terminal ileum was, but inside my mind I was thinking "I already know that." When my GI said "Humira" I already knew something about it. I knew about symptoms, medications, treatments and tests by spending endless hours reading these posts. The "Moms with kids who have IBD "are super educated and I always hold their posts in high regard.

I was not afraid at all when my GI said Humira and 6mp for me. But everyone has to make their own decisions. I'm closely monitored by having blood draws and GI appointments.

Hope you feel better soon and find the right treatment that works for you.

 

[Anna's Bandit]

unfortunately with this disease, you can have almost no symptoms with inflammation going on inside... that's why testing inflammatory markers like CRP or calpro is also very important as well doing scopes regularly.

I had a myriad of tests done before my diagnosis, so that made me feel better about what my diagnosis came to be. The colonoscopy showed it all, basically.....inflammation and stricture in my terminal ileum. And my calpro was 694. So confusing sometimes because I was diagnosed with UC in 2006.
I had blood tests, stool sample tests a CT scan and a Colonoscopy/Endoscopy.

Take Care